I know that I am very fortunate.
I received a good education at a pretty good school, I was fortunate to have a company that believed in me sufficiently to pay for my tertiary studies, which opened the door to management and really good prospects. I was also fortunate to work for a man who not only believed in me, but encouraged me to be the best I could be and showed me that every problem had a solution. I was fortunate to meet and marry an awesome guy and to be blessed with 3 beautiful children. I am fortunate to still have all of my siblings and mother alive and healthy and I am fortunate to live in a wonderful estate where my children can grow up as normally as possible in this sometimes troubled part of the world.
Recently I re-connected with a friend after 20+ years and I realised that I have been living in a bubble. Life has not been as good to everyone as it has to me. My life is so hectic with a husband, children, work, friends and family that I literally had NO IDEA that there were people out there (literally 5 kms from my house) who grew up in the same way as I did, but did not fare so well. Because I have such a full life, I could not grasp the fact that some people have very empty lives. I also battled to come to terms with the number of lonely people there are "out there."
Now the above-mentioned friend who I reconnected with after many years, spent a fair amount of his free time in bars (he preferred that I call them pubs) but seriously, what is the difference? Anyway, I could never understand the attraction of a smoky, watering-hole and it has taken me over a year to finally understand the attraction. The bars (sorry, I mean pubs) are for lonely people to meet other lonely people. Now before you get all offended that you went for drinks with your mates last week and you're not lonely and that I shouldn't tar and feather everyone with the same brush, I am referring to people who I refer to as "Bar-flies." Bar-flies are people who frequent a drinking establishment every day or almost every day and use it as a crutch because they don't want to go home to the lives that they have created, or the lack thereof. They also, often lie to themselves, their friends and family about the amount of time they spend in these establishments and that they have come to rely on them to recharge.
A friend of mine met her husband in a bar, so I quizzed him on the subject. Although he spent a LOT of time in bars, he does not fit my "Bar-fly" definition because he made the friends first and then went to the bar, so they would sometimes go and play tennis or do other things together. The bar-flies to which I refer, are the lonely people who strike up conversations with whoever else is at the bar at the time and think they are having a meaningful interaction. One self-proclaimed Barfly admitted that he has hung out with pretty much the same people night after night, week after week, month after month, year after year but they are not his friends! Huh???? He admitted that if he were hospitalised for any reason, he would not expect any of his Barfly "friends" to visit him. I was shocked! Why would anyone spend so much time with people, talk about their lives and innermost thoughts and then not visit their friend when he needed them most? I am obviously a bit slow, because as I said, it has taken me some time to realise that although these lonely people are interacting, they are not connecting. They are not sharing. None of those Bar-flies really know who they are talking to. They are all pretending. They are presenting a persona, an avitar if you will, of themselves. They have personal walls that they put up to protect themselves, their feelings and their real lives and only share the parts that they want their bar-friends to know, some truths, some lies.
This has disturbed me enough to write about it.
I have always had a knack of sorting out other people's problems and I would love to be a Life Coach, but realistically I don't really see that happening in the near future (I'd need another 10 hours in my day), however I do amateur Life Coaching as a hobby and the more I see of this bar-world, the more I worry about what people are going through in their daily lives. The man who considers himself a Barfly, has admitted that he loves political writing and I've read some of his work and it's really good! He often writes open letters which are published in the newspapers and in fact he's even written four chapters of a book, but he hasn't finished it...... yet. He is twice divorced with grown up children and grandchildren who live a fair distance away, but what does he do after work instead of completing his book? He goes to "the pub." This is what I battle to understand. Are the lonely getting lonelier? Logically they must realise that they are spending their time with people who do not care about them, but they still invest years of their spare hours into these non-relationships.
Well the friend that I mentioned earlier, who I reconnected with after 20+ years, he was on the verge of suicide and he reached out to me in the early hours of the morning when he was about to do the deed. Me. Someone he knew 20 years ago. It made no sense to me. He had been out with his Barfly friends and couldn't even tell them what he was planning when he got home. I spent hours, days, months trying to help him and fortunately he did not go through with the suicide. He started studying, he started gaining a new interest in cooking and his family. He began opening up his life to new possibilities and things were looking good. He started looking after his health needs and even started sounding positive about life. He became a better father and son and even started having dinner with his parents once a week........ until he got sucked right back in. One call from an "ex-girlfriend" put him right back where he was. The ex-girlfriend, an alcoholic, needed money and wanted attention and a drinking buddy. My friend fell right back into the old routine. He stopped studying and has wasted yet another year of his life with nothing to show for himself. He has gone off the rails and is headed down a new path of self-destruction.
This leads me to my conclusion, which is actually a question - are Barflies lonely because they choose to be? I work hard at maintaining friendships because I enjoy them. I enjoy interacting with my friends, knowing about their trials and tribulations and I am comforted that I can share my problems with them in return. If ever I need some human interaction, or I need to off-load I don't have a meaningless discussion with the first person who greets me in a bar, I pick up the phone and arrange a time and date with a friend. We then are able to discuss the details of our lives, and if the problem is not solved, at least we would have had a good few laughs about it and found the strength to carry on. If a friend was hospitalised, I'd be there for them and they'd be there for me. Are these Barflies scared to connect? Is it too much of a commitment to have and retain a real friendship? Are there underlying social and or psychological issues here that prevent them from wanting a long-term relationship?
I started this post by admitting how fortunate I am. Maybe I have had an easier path than others and maybe I just don't understand. If you have any thoughts or input on this topic, I'd love to hear them because I realise that I may be judging harshly. Maybe there is a viewpoint out there that makes sense. I sure hope so.
PS After I'd written this post, I hadn't finished so I then wrote a sequel. Click here to read it - Only the Lonely Part 2
Sunday, August 11, 2013
Sunday, August 4, 2013
The Eczema Chronicles
If you want to know where we've come from, start with my first blog post regarding this called Skin Deep
After promising not to focus on Tomato's skin condition, here I am devoting another blog post to this issue. But this time it's not really my idea. Tomato's skin is getting progressively worse and I have been refered to a Naturopath in Pretoria by a friend of a friend. This doctor asked me to keep a diary of Tomato's progress so I thought I'd do it online so that all the people who are interested in her progress can check up on us without feeling like they have to ask me. So here goes......
I start off day by day, then get so depressed that I do month-by-month (missing some months) and then finally I find the answer!!!
For a month we have been doing well. I squeeze cortisone ointment into Vaseline and apply it without Tomato knowing, to the necessary areas, morning and night.
The cortisone honeymoon is coming to an end and tonight we are back to her writhing on her bed, itching and scratching. The sores are returning in small areas, strangely enough on the sides of her arms and legs and on her tummy, bum and back. I am gripped by the fear that we are going back to where we came from. She has put on almost 5kg from the cortisone. Fortunately she doesn't understand this at this point of her life, what that means, she just knows that her clothes aren't fitting her (she's wearing size 9-10 and she's 7). She craves sugar and sneaks litres of custard, hot chocolate powder into her room to eat on the sly. Today she ate a whole pack of vermicelli (cake decorations).
She has the gastroscopy and colonoscopy scheduled for Monday in Pretoria where they will also draw blood and maybe do skin scrapings. I am dreading Sunday and the preparation that I know will torment her (and inadvertently the family). Hoping for lots of strength to be able to help her over that hurdle.
The preparation, as anticipated, was not as bad as I had thought (hunger-wise) although she did hate taking the medicine to flush her out. I was at my wits end when I had given her the last dose (it's scripted, so you only get the exact amount) and found her disposing of it on her carpet behind the curtains!! I nearly hit the roof. Anyway the procedure went well and she was thrilled that they gave her greasy "slap" chips as her first meal!!
Now of course we wait for the results, it was December after all. What we do know is that there was an issue at the lab regarding the blood tests and therefore they have to be re-done! Don't these people realise that it's not that simple? Twice we've had to do the bloods while she is out and twice they've screwed them up grrrr.
Tomato has been doing a lot of swimming this holiday and her skin seems to be holding it together. We're onto half a cortisone tab every second day and I need to stop it soon but I think I will carry on for another 2 weeks, just to get her settled into her new grade at school.
Nearing the end of Jan and we've been back to the Allergist who only wants us to come back in April yay! Tomato has been cooperating so nicely and has allowed me to put Vaseline on her twice a day from head to toe and I sneak the cortisone cream in without her knowing because the texture is the same. She puts it on herself before and after swimming to protect the weak areas. I try to only put cortisone on the exact spot when they arise as the cream thins the skin and it therefore breaks more easily when scratched. So far we've only had about 5 difficult, itching badly nights this month.
Boils (staph infections) have entered our lives again but we are trying to keep positive and take them as they come. Tomato has 6 on her back at the moment, but fortunately they are quite small.
We have had 14 days of non-stop rain to kick-start March. Unfortunately the weather has taken its toll on Tomato's skin. She is itching and scratching and starting to cry.
The Eczema is starting like little pimples or blisters on her back and tummy which she scratches until they bleed. Her finger nails are cut short but she still scratches. I apply the Vaseline and cortisone cream every morning and every night without fail but the Allergist was correct in her prediction that it will worsen when the weather cools, which we assumed would be the usual April, but unfortunately it has started earlier!
This morning Tomato was frantic, she can see it's coming back and she is getting more and more anxious. I gave her a cortisone tablet this morning and I will do so for a week to see if we can get it back under control. Scrolling down and looking at the photos from last year makes my blood run cold. Right now I'm just hoping and praying that we're not in for another winter like we had last year. Please send good thoughts and prayers.
Her skin is slowly getting better after 4 days although her colouring is very pasty again. Think happy thoughts think happy thoughts think happy thoughts.............
The Dr did an allergy test and she is not allergic to egg white or yolk, gluten, dairy - yay! But she is allergic to 2 different grasses, mould, dogs and cats (shame and she is so desperate for a pet.) So last Autumn when I instigated a "play in the Autumn leaves" game and she ended up screaming all night, that was because of the mould on the leaves and the spores. And the time she was running at her new school in Grade 0 on the field in the hot sun and she went beserk, it was from the grass! So as horrible as it is, I'm thrilled that we now KNOW and can avoid wherever possible. E.g. when she says she wants to play hockey - no!
Apparently there is a method of a series of weekly injections to de-sensitize her, but it costs R16 000 and is not guaranteed, so we'll just wait it out. I have been given oral antibiotics if I need for the staph, cortizone ointment by the litre (just for the specific areas) and anti-histamine for August, going into Spring which is apparently the worst time for allergies (makes sense).
Well the staph infection got worse, so we went onto the antibiotics and it is much much better. We went on holiday to a farm and that was a struggle but we managed, although it is heartbreaking to keep saying "get out of that long grass" when she's picking flowers for me :-((
We are religiously putting Bactroban in her nose and putting on the cortisone cream and Vaseline twice a day. She is also still on Cipralex due to the anxiety. I am hoping to give the Cipralex a break when it gets warmer, but right now we're living day to day hoping the cold doesn't bring what it did last year!!
Tomato started netball last week and has to sit on the side to avoid the warm-ups on the field due to her grass allergy (always something to single her out and make her feel different). I'm not sure whether it is skin related or whether she is just battling with everything but she has complete melt downs when she gets home from school and has to do homework. From start to finish it takes around 2½ hours due to her being distracted and losing focus. I'm very worried that Ritalin or the like will be prescribed and although I think there may be merit, I am so against all the drugs that this little human is having to process in that young, growing body.
I now have an 8 year old! Tomato got a little hamster for her birthday and was over the moon. I'm not sure if she's allergic to it but she does handle it in the cage. She has broken out in a staph infection and is scratching day and night. The Allergist has put her back onto a week of cortisone tabs (same strength as mine) and an antibiotic that needs administering 4x per day and tastes terrible (APEN). I've given up on the health kick for the week and she gets a block of Top Deck with each crushed up tablet and 5ml of antibiotic. I'm not seeing a lot of results and the tabs are making her tummy sore and she's feeling sick. This poor child, when will it ever end?
3 Days later and we're back to the Allergist and the staph infection is rampant! More cortisone and wet wrapping 4 x to get the infection and itching under control. We apparently need to start saving the R16 000 to de-sensitise her to mould and grass as it is getting too bad. Bactroban in nose again. Need to go back next week.
I need to journal again as per the doc, so here goes:
Day 1 on Med
Loved it, was able to sit still, but kept her awake until 11pm
Day 2
Not too bad but a bit of a tantrum
Day 3
Weekend, so not an issue
Day 4
Forgot to give med (oops!)
Day 5
Was good until I got home from work and Tomato had a meltdown of epic proportions (lasted 3 hours) during which she asked me to assist her with her own suicide, she asked me to kill her, she wanted to die to stop her misery. Her friend at school had told her other friends that Eczema was contageous and they should all keep away from her. She wanted to run away from home and be on her own. Such a hard hard day.
Day 6
More tranquil. Was awake until 11pm (kept her brother and sister up too!!)
Day 7
Slight drama, a bit of fighting but happier. Allergist said no more Physical Ed at school and might send her to OT instead. Fluffy polar fleece track suit cannot be worn (std PE kit) and her allergy to grass is becoming a problem. Large doses of cortisone, bath in salt, wet wrapping (shame it's freezing).
Day 8
Sat and did homework and got 21 out of 28 for a mock spelling test! Insisted on doing maths alone.
Day 9
Much calmer but her skin is very itchy. Did wet-wrapping and salt in the bath to get rid of the staph but dries out her skin.
Long weekend - no new drug just cortisone, Cipralex and Melatonin. Lots of Vaseline and wet wrapping (shame it's really cold to do this in winter). Her legs are itching badly.
The staff is back and giving me grey hairs!! This is on her foot:
She is starting to get quite a few boils on her back as well.
Well the Allergist did warn us that it would be bad in winter and poor Tomato is having a rough time. She is waking up in the night and scratching and she even asked me to do wet wrapping because it is so painful. She has another boil on her foot, leg and wrist which I am hoping will go soon.
At the moment we are putting salt in her bath and putting on cortisone cream and loads of Vaseline twice a day. As soon as the boils get a head on them, I apply a small amount of 8Trek ointment which is fantastic for pulling out the pus and cover with a plaster overnight. By the morning it has pulled out the gunk and is usually a lot less sore, although the scars are looking bad. Hoping for winter to pass quickly.
Wow it is amazing how fast skin can deteriorate! Back to our awesome Allergist who has put Tomato onto a new regimen of meds. I feel like a pharmacist again dishing out mammoth amounts of drugs day and night but it can't be helped. I ordered the 2 de-sensitisation medications. We will come up with the R32 000 when the time comes. I am remaining positive.
On 22 July we started the following:
No new staff infections since she started the above, so it looks like the antibiotics are working.
.jpg)
I have no idea what is going on with her, she is having the antihistamines and antibiotics as mentioned last month. Just hoping that whatever it is, it gets better by the morning.
Yesterday she had to take her socks and shoes off and she was so embarrassed because then all the children could see her legs and the marks on them. Heartbreaking for her.
.jpg)
Second week into August and her skin is still itchy and red and although she is ok in the day, she is still going crazy at night, so weird how it flares up at night. We continue religiously with the meds and cortisone cream and Vaseline.
It is an ongoing battle. The other day I said something about "that's it, I give up" and she said "you promised you'd never give up on me." I was talking about something else, but so scary to see how quickly she thinks I would give up on her! I explained that I wasn't referring to her or her skin, which made her very happy. Such big issues to deal with for such a small child.
Even her little brother helps with "putting on cream" and he does it so gently. This is a disease that affects the WHOLE family.
I had such a wonderful experience last week, when I met a lady from a French-based company that makes products for skin problems. The product is called Avene and will only be available in South Africa from 2015. I am so excited by Avene that I have devoted a blog post to this exciting new product. Here is the link to the blog post: Is Avene the Miracle that we have been waiting for? Click on the video, it looks amazing!!
We have started using the products and I will, as always keep updating our progress.
Today Tomato, who has taken up Judo as an extra mural, won a little award for being the only one who could perfectly perform a move that was requested. Afterwards she was given a prize (an Aero) but because she was sweating, scratcing like crazy and making her skin bleed, instead of a ceremony in front of her little peers, it had to be done quietly afterwards with just me and her siblings present. She ran into the parking lot and tried to show as many friends as possible that she had won a prize. It just kills me to see, even her achievements, marred by this skin issue. Self-esteem is so hard to build under these conditions.
We saw the Allergist and we may need to go onto cortisone tablets again for a while - NOOOOOOOOO. She has agreed to reduce the antibiotic to 3 months instead of 6 as Tomato's immune system is taking a knock. So one more month, after which we will watch to see if the staph infections return. The Doctor also prescribed a stronger antihistamine for the mornings and doubled the dose for night.
I went to see the sports co-ordinator at Tomato's school as their physical activity program is negatively affecting Tomato's skin. The lady was very kind and understanding and we came up with a workable relationship which will hopefully assist. She suggested that tennis may be too warm and that we should go back to netball as it takes place in a shady spot away from the grass. Tomato will be in control of what she can and can't do.
The other night she was going crazy from the itch and I remembered reading on the blog of the mom who went to Avene, that we should cool the skin. So I did what she suggested, which was to wet the skin with Avene water, place tissues over the affected area and spray again and leave for a few minutes. Poor Tomato looked like a mummy but she lay there and felt much better afterwards.
On Saturday she went to a lovely party where they baked. She loved it! But the cake together with the party pack sweets and chocolates put her into a downward spiral and we battled to bring her skin back into the "manageable" zone.
Everything we do, we need to bear her skin in mind. When.will.this.end?
I know it sounds strange but I was quite excited!! I have always said that in my (non-medical) mind, that there is something underlying that is causing her skin irritation. Perhaps the protein, infection is what she has been suffering from and it has now just gotten worse. So I couldn't wait to find out what sort of bacteria it was, and if it could have been present for a long time in her system. I thought that I saw a light at the end of the tunnel....... I was wrong.
After 4 days in the hospital the Paediatrician released her and told us that no cultures grew because she had been on a low dose of antibiotics for her staph infection, which obviously kills off the growth of the bacteria under laboratory conditions. I was annoyed because as a lay person I can understand that, and I mentioned that she was taking Purbac for an extended period when she was admitted, so surely this was an exercise in futility, for which the medical aid, fortunately paid.
After getting home and completing a 5 day course of antibiotics, Tomato started to take a downward turn, homework became a battle and I could see her skin was reacting and she was refusing to allow me to put the Vaseline on. I called the Allergist and she suggested we do more bloods to determine her levels. I asked if we could check her protein and blood sugar as well, as she is addicted to sugar and throws tantrums when she can't get her hands on it. I may have mentioned this before, but sugar is limited in our family and she has even gone so far as to eat icing sugar and ordinary sugar in desperation! Twice before we have done the blood sugar test, but both were messed up at the lab, so I jumped at the opportunity.
We went through the Emla patch palaver and I raced her through to the lab and it went pretty smoothly. I then phoned, texted, phoned, phoned and phoned again to get results from the Allergist. I eventually only got results when I burst into tears on the phone with the receptionist and asked if the results could be sent to me so that I could take then to another doctor! The Allergist then phoned me back.
A friend of mine has a friend who almost died from an auto-immune disease last year and she contacted John of God and he did a long distance healing and her life was spared. I had seen this method on Oprah many years ago, but I kept thinking, how do I contact John of God and say that I want him to heal my daughter, when she ONLY has Eczema? Surely it is not in the same league as someone who is dying? But to be honest, it does feel like Eczema is terminal. Apologies, inflammatory comment, but that's how I feel.
After promising not to focus on Tomato's skin condition, here I am devoting another blog post to this issue. But this time it's not really my idea. Tomato's skin is getting progressively worse and I have been refered to a Naturopath in Pretoria by a friend of a friend. This doctor asked me to keep a diary of Tomato's progress so I thought I'd do it online so that all the people who are interested in her progress can check up on us without feeling like they have to ask me. So here goes......
***Spoiler Alert***
I start off day by day, then get so depressed that I do month-by-month (missing some months) and then finally I find the answer!!!
Eczema is not only a disease of the skin, it's a disease of the soul
JULY 2013
29 July 2013
I was keen to try a Naturopath because I really prefer the natural route and I am worried about all the harsh medications that we had made this poor child consume I made an appointment, the earliest she could see me was in a weeks time. But after a traumatic weekend I phoned the new doctor in tears and begged her receptionist to make a plan for an earlier appointment. Tomato had been up the entire night screaming in pain, scratching and bleeding and I had to tickle her back and sing to her otherwise she would freak out.
The doctor said "come now" which I did (took an hour to drive to Pretoria). She asked for 21 blood tests and prescribed a supplementation concoction in the form of a shake which tastes weird, so Tomato hates it. She refused to drink it so I lost it! I screamed so loudly that I didn't even recognize myself. She got such a fright she had glugged it down before I had finished shouting. Shame, I felt bad, but I am so sleep deprived! At least it is in her system and holding thumbs it's going to work.
31 July 2013
Tomato woke up in my bed singing. I cried. She had woken up 3 times in the night scratching and bleeding and being scared but went right back to sleep. What a wonderful morning of no drama. I bought chocolate soya milk to make the shake taste better but she screamed just like the first time she had to take it. During a calm moment while we were cuddling I explained that the shake has to go into her body and I'm not going to fight with her about it. She understands but I think we're in for some drama. Her skin is still sore and she's still scared and itching and scratching and bleeding.
1 August 2013
Another rough night but again she went right back to sleep after the wakings. Again she spent the night in our room, we're getting no sleep! However, no screaming when she woke up and no screaming in the day. We are on a roll! The less screaming, the happier the whole family is and we are all feeling like there's hope. The shake was again a drama. I ignore it completely and tell her to drink it and tell me when she's done, no discussion. She is still itching, scratching, bleeding but not as frantically as before.
2 August 2013
Tomato and Bacon woke up during the night and came through to our room to sleep. I put Emla patches on both Tomato's hands at 6am and got ready for the 21 blood draw under general anaesthetic (she is too nervous to be able to endure a blood test without anaesthesia.) She did well, slept a lot and was quite chipper in the afternoon. The anaethetist put some steroids in her drip and we slathered on cortisone cream while she was under. Her skin, especially on her face felt so soft and lovely. I wish she would allow me to cream her!
Well was I wrong! Tomato slept through the night and woke me up before my alarm, fully dressed, teeth brushed and she and Bacon had gone downstairs and made themselves breakfast and eaten it by the time they got to me!! I nearly fell over (luckily I was lying down!) She sang at the top of her lungs and was very happy until she realised that I had opened a capsule into her juice and then she put on a great performance and threw a tantrum. When I fetched her from school she was in good spirits but again when it came to bath time she began to itch, scratch and bleed. She couldn't bath again, just a top and tail again. She was too sore to walk down the stairs after her bath and I had to give her dinner in bed. Her eyes are sunken and red and blotchy. Her right pupil is very large. She was unhappy but drank the shake while I read her a story to distract her. She fell asleep immediately.
7 August 2013
8 August 2013
9 August 2013
11 August 2013
The last 2 weeks have been hell-on-earth. I am reminded of the saying "this too shall pass" and feel myself screaming "when?????"
The nights became intolerable with Tomato screaming in pain and ripping her skin relentlessly throughout the night. I went to see the school (to be honest, I just broke down and sobbed, embarrassingly loud sobs, which made me unable to speak properly.) The Head of Department was very kind and she told me to keep Tomato out of school if she was unable to attend due to pain. They also suggested that the school Educational Psychologist assess her immediately. I went to see the psychologist who assessed her the following day and would give me feedback after 3 sessions, but after that unfortunately Tomato missed 6 days of school. She couldn't get out of her bed. The sound of her keening from the pain was more than we could bear. On a "normal" day walking upright was only possible from about 9am but not properly. Stairs were always a problem and even later in the afternoon she would still need to hop down the stairs so as not to rip open her wounds. I phoned the doctor in Pretoria, the doctor who promised that she would "walk this road" with us, the lady who said she "saw the child" and realised that Tomato had no quality of life, the one who told me that SHE WOULD BE THERE. I phoned her on Monday, explaining how critical it was for her to call me, I phoned every day begging her to contact me as I didn't know what to do. Today is Sunday, still no call back a week later - seems the road got a bit tough for her and she's given up on us. For me though, I have to go on. "She aint heavy, she's my daughter."
In desperation I phoned the anaesthetist again who was wonderful, she got me in to see an Allergist almost instantly. She keeps asking me, "Does nobody realise that this is an emergency?" No, nobody does, it's "just" Eczema. At the hospital Tomato couldn't walk without shrieking in pain. It really does something to a mother's heart to put her child in a wheelchair, but we do what we have to, it's not about my feelings, it's about getting Tomato relief.
We eventually saw the allergist who AT LONG LAST!!!! realised that the allergy is not the problem!!! Yes her skin is a problem but the real issue is that Tomato is broken, she is worn down, anxious and withdrawn, she has regressed in her language and is frightened of everyone and all new things. Before starting any treatment the Allergist said we need the opinion of a child psychiatrist. Apparently large doses of cortisone increases anxiety (a side-effect) and as Tomato is at breaking point, she felt we couldn't begin that journey until we had psychiatric clearance. Wow, hectic stuff. Now to get an appointment with one of only 3 good child psychiatrists in Johannesburg is no easy task. Friends and family descended, all trying to help through various connections.
More friends arrived to help get her admitted in order to administer all the necessary medication in hospital. Paediatricians and surgeons were on call to set this up (I really and truly have amazing family, friends and friends of friends). We eventually managed to get an appointment - 48 hours later. I'd been to Dischem so often that I've made friends with the pharmacist. I was beside myself, I couldn't go through another night like I had. They gave me Phenergan to knock her out - antihistamine with massive drowsy side effects, because Aterax was out of stock. No such luck! She was still up screaming and itching at 12am although she did sleep for about 3 hours straight after that, which was a blessing..... of course I had to wake her up from her only sleep to go to the psychiatrist, after which I went back to visit my friend at Dischem. My sister-in-law who is a psychologist worked with Tomato for a few hours, which gave me a full hour of sleep (I have had less than 3 hours of sleep per night for the past 2 weeks and am starting to go psychotic).
Tomato was given Vallergan which is a pre-med and supposed to knock you out. Nope. Although she was tired at bed time, she got a second wind and only at about 1.30am it kicked in and she was out like a light. Of course we had to be up early again the next morning to take the anti-anxiety meds and more Vallergan to "tranquilise" her so that we could wrap her skin. The poor Allergist was on leave but came in and we tried for 2 hours to bribe, cajole and promise all sorts of exciting things, to no avail. We gave her a second dose of pre-med but she still wasn't budging. The Allergist said she was not going to force her because that is what has got us into the situation that we are in. Tomato has built up her own defence mechanisms to deal with the trauma of my "tough love" approach. Both sides of grandparents have said she just needs a spanking to put her in her place and that I'm not being hard enough on her, she is taking me for a ride. Thank goodness I knew better, but not before I have done a serious amount of damage to this little girl's psyche.
The Allergist (bless her heart) asked if Tomato liked cupcakes. Her eyes lit up, "yes, with sparkles". She is going to woo Tomato with cupcakes (even though she's not allowed wheat!) She is booked solid tomorrow but I am taking my little girl for tea with the doctor, to build up their relationship. She will see us quickly between her patients - how cool is that? After that Tomato came home, lay on a mattress in the lounge and fell asleep. She slept for 18 hours without waking. The poor child was exhausted!! More pre-med the following day and she slept from 9pm - 7am woohoo. Without being awake, she can't scratch, so her skin is much better! Also I am getting some cortisone into her with custard (yes, I'm over the dairy and wheat thing, she can have cupcakes with the Dr and custard to take her meds, otherwise I am very good). The poor poppet woke up yesterday with a stye in each eye! Seriously?? Can the poor girl take any more??
That being said, I think we may be on the right road............ Is "this too" passing? I sure hope so!
The doctor said "come now" which I did (took an hour to drive to Pretoria). She asked for 21 blood tests and prescribed a supplementation concoction in the form of a shake which tastes weird, so Tomato hates it. She refused to drink it so I lost it! I screamed so loudly that I didn't even recognize myself. She got such a fright she had glugged it down before I had finished shouting. Shame, I felt bad, but I am so sleep deprived! At least it is in her system and holding thumbs it's going to work.
30 July 2013
Last night was a bit better. Tomato woke up a few times but didn't stay awake for long. She went to school and we went looking for gluten-free bread as she has been put onto a wheat and dairy-free diet. When we got home she was tired, we did homework and I had to take a stool sample which needed to be rushed to the lab. She wanted to come with me to the lab so she drank her shake very quickly in order to come along. It was around 6.30pm and she got very tired. We got home and she fell asleep immediately.
31 July 2013
Tomato woke up in my bed singing. I cried. She had woken up 3 times in the night scratching and bleeding and being scared but went right back to sleep. What a wonderful morning of no drama. I bought chocolate soya milk to make the shake taste better but she screamed just like the first time she had to take it. During a calm moment while we were cuddling I explained that the shake has to go into her body and I'm not going to fight with her about it. She understands but I think we're in for some drama. Her skin is still sore and she's still scared and itching and scratching and bleeding.
AUGUST 2013
1 August 2013
Another rough night but again she went right back to sleep after the wakings. Again she spent the night in our room, we're getting no sleep! However, no screaming when she woke up and no screaming in the day. We are on a roll! The less screaming, the happier the whole family is and we are all feeling like there's hope. The shake was again a drama. I ignore it completely and tell her to drink it and tell me when she's done, no discussion. She is still itching, scratching, bleeding but not as frantically as before.
2 August 2013
Tomato and Bacon woke up during the night and came through to our room to sleep. I put Emla patches on both Tomato's hands at 6am and got ready for the 21 blood draw under general anaesthetic (she is too nervous to be able to endure a blood test without anaesthesia.) She did well, slept a lot and was quite chipper in the afternoon. The anaethetist put some steroids in her drip and we slathered on cortisone cream while she was under. Her skin, especially on her face felt so soft and lovely. I wish she would allow me to cream her!
3 August 2013
I had a talk with both the girls last night and told them that they needed to stay in bed during the night and not come through to my room. The girls slept through but Lettuce woke up in the early hours with a stuffy nose. Tomato woke up, dressed herself and was a happy child bragging that she felt well-rested and that she didn't itch at all and that there were NO scabs in her bed this morning!! She said she felt like she didn't even have Eczema!!
I had a talk with both the girls last night and told them that they needed to stay in bed during the night and not come through to my room. The girls slept through but Lettuce woke up in the early hours with a stuffy nose. Tomato woke up, dressed herself and was a happy child bragging that she felt well-rested and that she didn't itch at all and that there were NO scabs in her bed this morning!! She said she felt like she didn't even have Eczema!!
4 August 2013
Tomato slept through the night (In Bacon's bed) and woke up in good spirits. She didn't scratch at all during the day but after visiting Granny, who has cats, there was a bit of scratching. She performed about having her shake and put on a dramatic performance of pretending to vomit, but she did it. She took herself off to bed and fell asleep before story time, which is unheard of but did scratch a bit. I tried to gently suggest she use the moisturizing cream but she went crazy so I put some on me to show her how nice it is and put it back on her shelf. Her skin is looking good but starting to dry out again, probably causing the itch.
6 August 2013Tomato slept through the night (In Bacon's bed) and woke up in good spirits. She didn't scratch at all during the day but after visiting Granny, who has cats, there was a bit of scratching. She performed about having her shake and put on a dramatic performance of pretending to vomit, but she did it. She took herself off to bed and fell asleep before story time, which is unheard of but did scratch a bit. I tried to gently suggest she use the moisturizing cream but she went crazy so I put some on me to show her how nice it is and put it back on her shelf. Her skin is looking good but starting to dry out again, probably causing the itch.
5 August 2013
Tomato had a good night with a solid 11,5 hours sleep. I woke her up and she was in good spirits and the morning was quite pleasant although she did tell me that she was starting to itch again (the steroid from the drip was wearing off). By the afternoon she was tearing her skin and by this evening she was bleeding and scratching like she did before. She had a meltdown when she had to take her shake and then afterwards she couldn't walk up the stairs by herself and she needed me to tickle her back to get her mind off the itching. She has just called me again to come and lie with her. She's sore. I just want to cry. 2 Steps forward and 1 step back.
Well was I wrong! Tomato slept through the night and woke me up before my alarm, fully dressed, teeth brushed and she and Bacon had gone downstairs and made themselves breakfast and eaten it by the time they got to me!! I nearly fell over (luckily I was lying down!) She sang at the top of her lungs and was very happy until she realised that I had opened a capsule into her juice and then she put on a great performance and threw a tantrum. When I fetched her from school she was in good spirits but again when it came to bath time she began to itch, scratch and bleed. She couldn't bath again, just a top and tail again. She was too sore to walk down the stairs after her bath and I had to give her dinner in bed. Her eyes are sunken and red and blotchy. Her right pupil is very large. She was unhappy but drank the shake while I read her a story to distract her. She fell asleep immediately.
7 August 2013
We had a good morning with the only drama being the drinking of the capsule-infused juice, but not too bad. She was in good spirits after school and wasn't too bad this evening although she started scratching again as soon a it got close to bath time. We haven't been able to properly bath her for about 3 weeks, hopefully this obstacle will be overcome soon. By dinner she was too sore to sit down on a chair and she ate lying on the floor with her legs out, scratching incessantly. She began to freak out, left her plate and went upstairs to bed. We had to do homework in bed. She drank her shake with a chocolate soya milk "shooter" which I put in a shot glass to make it more appealing. She scratched herself during story time and she called me back to tickle her back because she was itchy and scared.
8 August 2013
Tomato slept through the night and woke up like a normal child (I'm LOVING this!!) She told me that she didn't feel sick, which she feels every morning, could be the usual lack of sleep that makes her tired and she thinks that is "sick" but I'm thrilled. She has been so much calmer and less stressed. Tomato battled again at dinner and scratched a lot. She woke up a lot until about 11pm and finally went to sleep.
9 August 2013
It was a calm morning until Tomato realized she couldn't have rice crispies for breakfast because they contain wheat. She went mad and I put her in bed with me and tickled her back until she calmed down. We had a pretty good day but she didn't eat well and is looking pale and blotchy. She said she didn't feel well and I hated it but I had to force her to drink her shake. The screaming that she was scared and me having to hug her while she clung to me was heartbreaking.
We went upstairs and she got straight into bed. She was VERY upset by the noise from her siblings playing. When I read a story she didnt even want to sit up and look at the pictures, which is her favourite thing to do. She lay with her back to us and just listened with her eyes staring ahead. She told me tonight that she keeps asking God why she has Eczema and could he please take it away but he just doesn't listen. Her sister Bacon (age 5) told her that every time she needs to make a wish, she always wishes that her sister didn't have Ezema. I can't believe how this "disease" impacts the whole family. My heart is sore tonight.
10 August 2013
10 August 2013
Tomato needed water in the night and wanted me to lie with her. I had been up to see to Lettuce who was having a bad dream and closed my finger in his door so I was in a lot of pain. So I got the water and went straight to bed, explaining to her that I felt sick, which I did. She woke up in a grumpy mood and said she didn't feel well. She spent the entire day on the couch in her pjs, either watching TV or staring into space. Her appetite was bad and when I told her that we had to bath she went crazy, screaming and crying. I eventually got her to stand in the bath and just wash the areas with no wounds but water touched the back of her legs and she went wild. I had to take her out immediately and she was whimpering and rocking while I tried to put her pjs on. Hair wash will have to wait again.
She went downstairs to watch some more TV while I bathed her siblings, who were having a ball, and she ate very little dinner and I don't even want to go into the drinking of the shake, let's just say it was very unpleasant and she kept saying she was scared. She looks very pale and sickly. She went to bed And then woke up at 9pm with a temp of 38. The side effects of most analgesics (pain killers / fever reducers) is itching so I will wait and keep an eye on her and if necessary give her some codeine, holding thumbs it doesn't get worse. She is still awake and lying on a mattress in our room at 10.40pm.
11 August 2013
Hoo boy what a night! Between Tomato sleeping in my bed and Lettuce waking up 3 times, very little sleep was enjoyed last night. We were up early to attend a kiddy's party and she had a near meltdown when she had to take her morning capsule in chocolate soya milk. We were late for the party and then after an hour of being there Tomato was hot and begged to go home. I explained that we had to wait until we sang happy birthday before we left, but she just became more clingy, asking to leave every 5 minutes. She didn't look well. By the time we got home she was freezing, but she had no temperature. She watched TV for a bit and then we went out for a late lunch. She was clingy and hardly left my side to go play.
I tried something different with her shake tonight and she went berserk. I actually left and went upstairs to get away from the drama. To be honest the shake is disgusting and the shaker smells like cod liver oil. She finished it, ate a very little dinner and went to sleep before story time, she's exhausted and pale and blotchy but at least she's not s scratching tonight.
Spoke too soon, she's already woken up screaming that she's sore and itchy and scared....:(
Spoke too soon, she's already woken up screaming that she's sore and itchy and scared....:(
12 August 2013
There were no more wakings last night but again I was in tears this morning as she struggled to get dressed, cried that she was feeling sick and didn't eat anything for breakfast. I had to threaten her to have her tablet because she didn't want to drink anything and literally had to drag her to the car screaming. She cried all the way to school. This is her "normal" behavior. If she is sick we never know because she says she's sick every day. I have a very heavy heart today. What sort of childhood is this little girl having? Will she just remember me being an ogre forcing her to do things against her will? I feel like the worst mother on the planet today.
Tomato got home from school and she wasn't her smiley self. She was very excited about her new fish but when she had to wash her hair she went berserk. She got into such a state and scratched herself so badly that she couldn't even come downstairs. We did homework and dinner in bed. The shake-drinking was particularly bad today and after she eventually drank it, I promised to never do that to her again. She was traumatised, I was I tears, she was in tears, Bacon got no time from mommy today at all and Lettuce (not even 2 years old yet) kept saying "shouting, shouting." Thank goodness for awesome friends who come over with chocolate and a hug when we have one of these days.
13 August 2013
It's my birthday today so the morning was filled with excitement, presents, hugs and fun. Tomato only wanted scrambled eggs, so I made her 2 and she ate about half of it. She happily went to school. We had a fun afternoon but she battled to finish her homework, she complained of being tired and dizzy and having a sore tummy. She fell asleep in the car on the way home from swimming (she does not partake anymore, only Bacon now has lessons, due to the pain). I allowed her to have cake (full of wheat) with icing (full of butter) and she was in good spirits. She finished her homework at dinner and went quietly to bed after lighting candles and singing happy birthday, but she was itching. She didn't have her shake tonight. It doesn't seem to be working anyway, so why put her through that?
14 August 2013
Tomato woke up grumpy and didn't want to go to school. The morning was a bit stressful but at least she agreed to have breakfast, even though she only ate one small slice of gluten-free toast. She did finish the water which I had sneaked Rescue Remedy into, so she got into the car without too much of a fuss. She had a playdate which went well but bath time was again too taxing for her and she didn't want to come downstairs. Hubby was dispatched and they read dinosaur books to take her mind off the itching and she again had dinner in bed. She seems excited to be going to the doctor tomorrow. Holding thumbs we're on the way to a solution.
Tomato woke up grumpy and didn't want to go to school. The morning was a bit stressful but at least she agreed to have breakfast, even though she only ate one small slice of gluten-free toast. She did finish the water which I had sneaked Rescue Remedy into, so she got into the car without too much of a fuss. She had a playdate which went well but bath time was again too taxing for her and she didn't want to come downstairs. Hubby was dispatched and they read dinosaur books to take her mind off the itching and she again had dinner in bed. She seems excited to be going to the doctor tomorrow. Holding thumbs we're on the way to a solution.
15 August 2013
We woke up early and drove though to Pretoria to see the doctor. The blood tests revealed a couple of small issues but nothing serious. She doesn't even have a high allergy count. The doc thinks it is gut related so we will make an appointment next week with a gastroenterologist. I dropped her off at Mema (my mom) for the day and she had fun but when they went for a walk she had to rest half way. More meds, let's hope she takes them. Lots of screaming at bed time but she was tired so went to sleep quite quickly.
16 August 2013
Waking up was a nightmare. T didn't want to get up, she was tired and grumpy and did not want to go to school. She screamed and fought with us the whole morning. When I got home from work, she had a meltdown when she realized that Hubby and I were going out to celebrate a friend's birthday. She looks drawn and tired and she cried the whole time I got ready and when she waved goodbye. I never know whether she just wants attention or whether she is really sore.
17 August 2013
Waking up was good and T had a good "date with Daddy" day. Tonight she was in a fun mood which made the evening very pleasant. But once she'd bathed she was sore and dinner was in bed again. She feels dizzy and scared and I had to lie with her again for her to calm down and sleep. She said her heart was beating fast and her head keeps going round and round and she needs her mommy close by so she's not scared. Maybe she needs the shake :(
To respond to a comment, I thought it would be easier to document at the same time. This is the medication that she is supposed to take, mixed together with 180 ml of water to make up a shake. I open the capsules and crush the tablet in a mortar and pestle, then add the oil.
These are the powders:
These are the rest:
Since taking the shake has proved traumatic, we have now got some better tasting options as well as some new supplements to rectify deficiencies shown from the bloods:
Unfortunately she still NEEDS to take all the previous meds, especially the Benesom and Trancor as these seemed to be very helpful with her sleep and fears but she can't and forcing her is nothing short of torture for the whole family. The shake is once a day but the Trancore is twice a day (those are the big capsules). She can't swallow the caps (she starts retching just thinking about it) and they don't taste very nice so she knows when I've sneaked it into her juice and then we start the forcing/ screaming route again. She is not allowed wheat or dairy so no sneaking the meds into yoghurt or custard. I have tried making the shake with rice milk, chocolate soya milk, as well as juice. I've also tried separating the powders from the rest but nothing tastes nice. Shame I really feel for her because it's a lot to drink when you're that size and it doesn't taste nice at all, it's thick and furry and has bits in from the crushed tab :(
18 August 2013
What a great start to the morning, happy times. She brought all her meds to me for measurement and even made the orange fizzy one on her own! Loss of energy in the afternoon and she was just being difficult. Dinner was fine and then just before bedtime she became very stressed. She went upstairs first and got into bed early, scratching wildly. She clung to me saying she was scared and I lay with her for a while. When I went downstairs to have dinner she freaked out and came downstairs just to be near me. When Bacon arrived I took them both upstairs. An hour later she woke up panicked and was screaming for me. Here's hoping she has a peaceful, restful might.
19 August 2013
T woke up at least 5 times and eventually slept in our room and woke up another 3 times. Bacon also came to sleep with us because Tomato was missing from their room. Getting ready for school became a screaming match but they left quite happy in the end. I got some great ideas from a friend on how to make tablet taking easier so I tried one idea tonight without much success but I will persevere. Tomorrow I'm going to try make lactose free custard and see how that goes. This kind friend pointed out that one of the powders is "spicy flavour" and she Googled it and found that there were a lot better flavours available! Grrrr wish I had noticed that earlier, although at R750 a tub it isn't likely that I would have discarded the tub!! Shame, it does taste bad. Homework was a nightmare and she had a dramatic meltdown about having beetroot as the vegetable for dinner and having to take her meds. She also has diarrhea just to add to the fun! She woke up a lot tonight but is sleeping at the moment.
20 August 2013
She woke a few times and eventually slept in our bed. Good day (playdate). After bath time she couldn't walk down the stairs. Very itchy. Lifeless.
20 August 2013
She woke a few times and eventually slept in our bed. Good day (playdate). After bath time she couldn't walk down the stairs. Very itchy. Lifeless.
21 August 2013
T woke up a few times before 11 pm but slept through. Good day but hair washing was traumatic and her skin is sore. She couldn't come downstairs she was too sore. I made custard with Soya milk (did you know custard powder is wheat free - thanks Frances) and added a small amount of the vanilla shake and the Trancor and Beneson - she wanted to hurl. Threw that out and gave her more custard with only the Trancor dissolved in a bit of water first. She was ok with that. Fell asleep at 17h45 before dinner. She still has diarrhea.
I thought this custard at least looked nice, not good enough to mask the taste of the meds :(
Back to the drawing board......
I thought this custard at least looked nice, not good enough to mask the taste of the meds :(
Back to the drawing board......
22 August 2013
Another restless night, tears and fighting in the day, eventually some good fun before bed and then the start of the next restless night.....
30 August 2013
31 August 2013
Dr said get Patrick Holford Chill Food. Tried to crush it and disguise the taste again to no avail. R250 well spent (not). Dug her skin, stayed awake most of the night itching.
23 August 2013
No wakings in the night! Had to scream to get clothes on grr. Had mini Olympics at school, she ran and then scratched so badly that she had to watch TV all afternoon, that's the only thing that takes her mind off it. Taking capsules with medical syrup was a disaster and ended with another forcing and crying session. Hoo boy this is wearing me down. One wake up so far.
24 August 2013
T slept in our room again and slept well, only waking up when her siblings came rushing in. Got her some wheat free treats and bread. We had a happy day and evening but she started to scratch badly tonight and has woken a few times. She still has diarrhea and battles to get to the loo on time. She is taking 2 Trancors at night with a Benesom. She also has omegas 3x per day, magnesium 1x and probiotics 2x and vitamin D x1 and half a tsp of l-glutanine, a vit C tab 2x per day and an anti-mucolytic 2x. I can't get the 2 shakes near her. I feel like a pharmacist mixing potions all day long and hiding the meds in all types of foods but I'm not seeing any results, which is soul-destroying :(
25 August 2013
After 3 wakings T slept in our room again. She had a good night after that. Woke up pretty happy. Made more custard and added the Trancor and Besenol, she wasn't happy but she had it. She kept asking if I'd put the meds in and I had to lie. It really is grose. This is the contents of the 3 caps mixed with a tiny bit of water, smells disgusting.
I made the fatal mistake of dancing with my children tonight. T became crazed, itching and scratching. Could hardly do bathing routine (top and tail) have not bathed her in over a week now, maybe 2 because the water exacerbates the itching). She picked and scratched all existing scabs on her arms, legs and chest. Blood everywhere!
This picture of her was taken on my office floor while I worked and she just lay there. She woke up 4 times before 9pm and eventually came down stairs crying at about 9.15pm and we watched some TV together cuddling on the couch. Dad took her upstairs. Feeling shattered today, both Hubby and I sobbed tonight. She's so sore and nothing seems to be working. We both feel like giving up but what can you do? You have to go on. If we feel this bad, imagine how that little 7 year old girl feels all day every day. It's 2013, SURELY there has to be a solution!!!!
After 3 wakings T slept in our room again. She had a good night after that. Woke up pretty happy. Made more custard and added the Trancor and Besenol, she wasn't happy but she had it. She kept asking if I'd put the meds in and I had to lie. It really is grose. This is the contents of the 3 caps mixed with a tiny bit of water, smells disgusting.
I made the fatal mistake of dancing with my children tonight. T became crazed, itching and scratching. Could hardly do bathing routine (top and tail) have not bathed her in over a week now, maybe 2 because the water exacerbates the itching). She picked and scratched all existing scabs on her arms, legs and chest. Blood everywhere! |
| She allowed me to take this pic after a lot of cajoling |
26 - 28 August 2013
Same story. Can't fall asleep, waking up scared all thru the night. Coming downstairs, going back upstairs, calling me to come and lie with her. Grumpy mood. She still has the runs so I took her off all meds for a day to see if there is a difference.
Tried to make her a shake with a little bit of the yellow and white shake together with one capsule of Tramcor and the Beneson but she hated it!!! Grrrr I'm giving up on making fancy things and then just throwing them away! Today she told me that she has a germ that has surrounded her heart since she was 3 and it has made her feel sick ever since and she doesn't think I'm doing enough to take care of her because she still feels that way :( Wow that hurt! More tears. Hair washing was a nightmare and she's bleeding from all the scratching again.
Same story. Can't fall asleep, waking up scared all thru the night. Coming downstairs, going back upstairs, calling me to come and lie with her. Grumpy mood. She still has the runs so I took her off all meds for a day to see if there is a difference.
Tried to make her a shake with a little bit of the yellow and white shake together with one capsule of Tramcor and the Beneson but she hated it!!! Grrrr I'm giving up on making fancy things and then just throwing them away! Today she told me that she has a germ that has surrounded her heart since she was 3 and it has made her feel sick ever since and she doesn't think I'm doing enough to take care of her because she still feels that way :( Wow that hurt! More tears. Hair washing was a nightmare and she's bleeding from all the scratching again.
29 August 2013
Itching, scratching, bleeding, no sleeping
30 August 2013
Crying in the middle of the night, I got grumpy with her and she just said "mommy it's not nice having Eczema, you just don't know how sore it is" :(
31 August 2013
Dr said get Patrick Holford Chill Food. Tried to crush it and disguise the taste again to no avail. R250 well spent (not). Dug her skin, stayed awake most of the night itching.
SEPTEMBER 2013
1 September 2013
As per previous days. Now got a bad patch under her chin. She actually allowed me to put a minuscule bit of cream on that patch and a little bit on her elbow tonight. She has woken up numerous times already. Her runny tummy has stopped after I stopped the meds but the pictures speak for themselves, need I say more...........?
2 and 3 September 2013
As per previous days. Now got a bad patch under her chin. She actually allowed me to put a minuscule bit of cream on that patch and a little bit on her elbow tonight. She has woken up numerous times already. Her runny tummy has stopped after I stopped the meds but the pictures speak for themselves, need I say more...........?
Same as before. Screaming in pain, couldn't sit down today. Today I took her to a hypnotherapist. It was unsuccessful as she was NOT going to be hypnotised. Also an Iridologist.They got a small reading but she nearly climbed inside me to get away from them. No luck there. I will be reading scripts to her while she sleeps, hope that alleviates her fears.
4 September 2013
Awake twice in the night, scared. Wouldn't get out of bed. Scared to do PE. Playdate, on the way home started itching and ripping. Went straight to bed when we got home, screaming for me to lie with her. Did her homework in bed, came downstairs after lights-out to have dinner. Good mood. Back to bed, scared again. Called for me to lie with her again twice. Only had the magnesium, vitamin C and omegas today. Sent her blood results to the anesthetist as she had requested. Battling with the lack of time for me and hubby to connect. We're like parenting machines.
5 and 6 September 2013
No sleep, screaming itching, begging. Feeling desperate, like I just want to give up. This will be my last daily update. Will update when I can. It's just too depressing.
End of September 2013
4 September 2013
Awake twice in the night, scared. Wouldn't get out of bed. Scared to do PE. Playdate, on the way home started itching and ripping. Went straight to bed when we got home, screaming for me to lie with her. Did her homework in bed, came downstairs after lights-out to have dinner. Good mood. Back to bed, scared again. Called for me to lie with her again twice. Only had the magnesium, vitamin C and omegas today. Sent her blood results to the anesthetist as she had requested. Battling with the lack of time for me and hubby to connect. We're like parenting machines.
5 and 6 September 2013
No sleep, screaming itching, begging. Feeling desperate, like I just want to give up. This will be my last daily update. Will update when I can. It's just too depressing.
*****
In desperation I phoned the anaesthetist again who was wonderful, she got me in to see an Allergist almost instantly. She keeps asking me, "Does nobody realise that this is an emergency?" No, nobody does, it's "just" Eczema. At the hospital Tomato couldn't walk without shrieking in pain. It really does something to a mother's heart to put her child in a wheelchair, but we do what we have to, it's not about my feelings, it's about getting Tomato relief.
More friends arrived to help get her admitted in order to administer all the necessary medication in hospital. Paediatricians and surgeons were on call to set this up (I really and truly have amazing family, friends and friends of friends). We eventually managed to get an appointment - 48 hours later. I'd been to Dischem so often that I've made friends with the pharmacist. I was beside myself, I couldn't go through another night like I had. They gave me Phenergan to knock her out - antihistamine with massive drowsy side effects, because Aterax was out of stock. No such luck! She was still up screaming and itching at 12am although she did sleep for about 3 hours straight after that, which was a blessing..... of course I had to wake her up from her only sleep to go to the psychiatrist, after which I went back to visit my friend at Dischem. My sister-in-law who is a psychologist worked with Tomato for a few hours, which gave me a full hour of sleep (I have had less than 3 hours of sleep per night for the past 2 weeks and am starting to go psychotic). 
Tomato was given Vallergan which is a pre-med and supposed to knock you out. Nope. Although she was tired at bed time, she got a second wind and only at about 1.30am it kicked in and she was out like a light. Of course we had to be up early again the next morning to take the anti-anxiety meds and more Vallergan to "tranquilise" her so that we could wrap her skin. The poor Allergist was on leave but came in and we tried for 2 hours to bribe, cajole and promise all sorts of exciting things, to no avail. We gave her a second dose of pre-med but she still wasn't budging. The Allergist said she was not going to force her because that is what has got us into the situation that we are in. Tomato has built up her own defence mechanisms to deal with the trauma of my "tough love" approach. Both sides of grandparents have said she just needs a spanking to put her in her place and that I'm not being hard enough on her, she is taking me for a ride. Thank goodness I knew better, but not before I have done a serious amount of damage to this little girl's psyche.
That being said, I think we may be on the right road............ Is "this too" passing? I sure hope so!
OCTOBER 2013
I was diagnosed with an auto-immune disease brought on by lack of sleep and not looking after myself. The chronic pain is indescribable. Working is becoming harder and harder as I am a consultant. I bill on an hourly basis and I am finding it difficult to find the time to look for new work while our family is in crisis. Costs are increasing and income is decreasing - doesn't take a rocket scientist to see that that is a recipe for disaster!!I HATE ECZEMA
DECEMBER 2013
For a month we have been doing well. I squeeze cortisone ointment into Vaseline and apply it without Tomato knowing, to the necessary areas, morning and night.
The cortisone honeymoon is coming to an end and tonight we are back to her writhing on her bed, itching and scratching. The sores are returning in small areas, strangely enough on the sides of her arms and legs and on her tummy, bum and back. I am gripped by the fear that we are going back to where we came from. She has put on almost 5kg from the cortisone. Fortunately she doesn't understand this at this point of her life, what that means, she just knows that her clothes aren't fitting her (she's wearing size 9-10 and she's 7). She craves sugar and sneaks litres of custard, hot chocolate powder into her room to eat on the sly. Today she ate a whole pack of vermicelli (cake decorations).
She has the gastroscopy and colonoscopy scheduled for Monday in Pretoria where they will also draw blood and maybe do skin scrapings. I am dreading Sunday and the preparation that I know will torment her (and inadvertently the family). Hoping for lots of strength to be able to help her over that hurdle.
The preparation, as anticipated, was not as bad as I had thought (hunger-wise) although she did hate taking the medicine to flush her out. I was at my wits end when I had given her the last dose (it's scripted, so you only get the exact amount) and found her disposing of it on her carpet behind the curtains!! I nearly hit the roof. Anyway the procedure went well and she was thrilled that they gave her greasy "slap" chips as her first meal!!
Now of course we wait for the results, it was December after all. What we do know is that there was an issue at the lab regarding the blood tests and therefore they have to be re-done! Don't these people realise that it's not that simple? Twice we've had to do the bloods while she is out and twice they've screwed them up grrrr.
Tomato has been doing a lot of swimming this holiday and her skin seems to be holding it together. We're onto half a cortisone tab every second day and I need to stop it soon but I think I will carry on for another 2 weeks, just to get her settled into her new grade at school.
JANUARY 2014
The itching is increasing, I definitely think it is anxiety related. Today she insisted on wet wrapping! Wow I was shocked, she hates wet wrapping. The other day I asked her what she loves about herself and she said she loves that she doesn't have Eczema anymore. Heartbreaking. Now we start focusing on a more natural, real, additive-free diet.Nearing the end of Jan and we've been back to the Allergist who only wants us to come back in April yay! Tomato has been cooperating so nicely and has allowed me to put Vaseline on her twice a day from head to toe and I sneak the cortisone cream in without her knowing because the texture is the same. She puts it on herself before and after swimming to protect the weak areas. I try to only put cortisone on the exact spot when they arise as the cream thins the skin and it therefore breaks more easily when scratched. So far we've only had about 5 difficult, itching badly nights this month.
FEBRUARY 2014
I am keeping up with the cortisone-infused Vaseline smothering every morning and every night. Our furniture and Tomato's bed linen have oil stains all over them, but this is part and parcel of living with a child with Eczema.Boils (staph infections) have entered our lives again but we are trying to keep positive and take them as they come. Tomato has 6 on her back at the moment, but fortunately they are quite small.
MARCH 2014
We have had 14 days of non-stop rain to kick-start March. Unfortunately the weather has taken its toll on Tomato's skin. She is itching and scratching and starting to cry.The Eczema is starting like little pimples or blisters on her back and tummy which she scratches until they bleed. Her finger nails are cut short but she still scratches. I apply the Vaseline and cortisone cream every morning and every night without fail but the Allergist was correct in her prediction that it will worsen when the weather cools, which we assumed would be the usual April, but unfortunately it has started earlier! This morning Tomato was frantic, she can see it's coming back and she is getting more and more anxious. I gave her a cortisone tablet this morning and I will do so for a week to see if we can get it back under control. Scrolling down and looking at the photos from last year makes my blood run cold. Right now I'm just hoping and praying that we're not in for another winter like we had last year. Please send good thoughts and prayers.
Her skin is slowly getting better after 4 days although her colouring is very pasty again. Think happy thoughts think happy thoughts think happy thoughts.............
APRIL 2014
I took Tomato back for her April check up and the pics above from last month, are apparently a staph infection. This happens from scratching, collecting bacteria under the nails and transferring it. With kids their fingers are into everything - sand, leaves, their noses, bums (they're quite gross creatures!) and so, although I get them to wash their hands regularly, their fingernails are always black by bathtime. So again we have to put Bactroban into Tomato's nose and obviously keep her nails as short as possible (they are pretty short anyway).The Dr did an allergy test and she is not allergic to egg white or yolk, gluten, dairy - yay! But she is allergic to 2 different grasses, mould, dogs and cats (shame and she is so desperate for a pet.) So last Autumn when I instigated a "play in the Autumn leaves" game and she ended up screaming all night, that was because of the mould on the leaves and the spores. And the time she was running at her new school in Grade 0 on the field in the hot sun and she went beserk, it was from the grass! So as horrible as it is, I'm thrilled that we now KNOW and can avoid wherever possible. E.g. when she says she wants to play hockey - no! Apparently there is a method of a series of weekly injections to de-sensitize her, but it costs R16 000 and is not guaranteed, so we'll just wait it out. I have been given oral antibiotics if I need for the staph, cortizone ointment by the litre (just for the specific areas) and anti-histamine for August, going into Spring which is apparently the worst time for allergies (makes sense).
Well the staph infection got worse, so we went onto the antibiotics and it is much much better. We went on holiday to a farm and that was a struggle but we managed, although it is heartbreaking to keep saying "get out of that long grass" when she's picking flowers for me :-((
We are religiously putting Bactroban in her nose and putting on the cortisone cream and Vaseline twice a day. She is also still on Cipralex due to the anxiety. I am hoping to give the Cipralex a break when it gets warmer, but right now we're living day to day hoping the cold doesn't bring what it did last year!!
MAY 2014
Still putting Bactroban in her nose. Had an incident with an insect (I assume) and we rushed to give her Deselex (an antihistamine syrup) which at least put her to sleep and stopped the frantic scratching!! Hoo boy!Tomato started netball last week and has to sit on the side to avoid the warm-ups on the field due to her grass allergy (always something to single her out and make her feel different). I'm not sure whether it is skin related or whether she is just battling with everything but she has complete melt downs when she gets home from school and has to do homework. From start to finish it takes around 2½ hours due to her being distracted and losing focus. I'm very worried that Ritalin or the like will be prescribed and although I think there may be merit, I am so against all the drugs that this little human is having to process in that young, growing body.
JUNE 2014
I now have an 8 year old! Tomato got a little hamster for her birthday and was over the moon. I'm not sure if she's allergic to it but she does handle it in the cage. She has broken out in a staph infection and is scratching day and night. The Allergist has put her back onto a week of cortisone tabs (same strength as mine) and an antibiotic that needs administering 4x per day and tastes terrible (APEN). I've given up on the health kick for the week and she gets a block of Top Deck with each crushed up tablet and 5ml of antibiotic. I'm not seeing a lot of results and the tabs are making her tummy sore and she's feeling sick. This poor child, when will it ever end?3 Days later and we're back to the Allergist and the staph infection is rampant! More cortisone and wet wrapping 4 x to get the infection and itching under control. We apparently need to start saving the R16 000 to de-sensitise her to mould and grass as it is getting too bad. Bactroban in nose again. Need to go back next week.
I need to journal again as per the doc, so here goes:
Day 1 on Med
Loved it, was able to sit still, but kept her awake until 11pm
Day 2
Not too bad but a bit of a tantrum
Day 3
Weekend, so not an issue
Day 4
Forgot to give med (oops!)
Day 5
Was good until I got home from work and Tomato had a meltdown of epic proportions (lasted 3 hours) during which she asked me to assist her with her own suicide, she asked me to kill her, she wanted to die to stop her misery. Her friend at school had told her other friends that Eczema was contageous and they should all keep away from her. She wanted to run away from home and be on her own. Such a hard hard day.
Day 6
More tranquil. Was awake until 11pm (kept her brother and sister up too!!)
Day 7
Slight drama, a bit of fighting but happier. Allergist said no more Physical Ed at school and might send her to OT instead. Fluffy polar fleece track suit cannot be worn (std PE kit) and her allergy to grass is becoming a problem. Large doses of cortisone, bath in salt, wet wrapping (shame it's freezing).
Day 8
Sat and did homework and got 21 out of 28 for a mock spelling test! Insisted on doing maths alone.
Day 9
Much calmer but her skin is very itchy. Did wet-wrapping and salt in the bath to get rid of the staph but dries out her skin.
.jpg) |
| Staph infection |
Long weekend - no new drug just cortisone, Cipralex and Melatonin. Lots of Vaseline and wet wrapping (shame it's really cold to do this in winter). Her legs are itching badly.
The staff is back and giving me grey hairs!! This is on her foot:
JULY 2014
Tomato's baby sister Bacon is afraid of dogs. A kind friend invited us round to see her puppy and hopefully assist Bacon with her phobia. Unfortunately Tomato left there after about 45 minutes itching and blotches started to form around her mouth, chin and neck. Fortunately we were close to home so I rushed her in, took all her clothes off, which had obviously attracted some dog hair, whipped her into the bath and washed her gently. She was very uncomfortable and was crying. I gave her a dose of anti-histamine, dressed her and wrapped her snugly and put her in front of the TV to distract her with a movie.She is starting to get quite a few boils on her back as well.
Well the Allergist did warn us that it would be bad in winter and poor Tomato is having a rough time. She is waking up in the night and scratching and she even asked me to do wet wrapping because it is so painful. She has another boil on her foot, leg and wrist which I am hoping will go soon.
At the moment we are putting salt in her bath and putting on cortisone cream and loads of Vaseline twice a day. As soon as the boils get a head on them, I apply a small amount of 8Trek ointment which is fantastic for pulling out the pus and cover with a plaster overnight. By the morning it has pulled out the gunk and is usually a lot less sore, although the scars are looking bad. Hoping for winter to pass quickly.
Wow it is amazing how fast skin can deteriorate! Back to our awesome Allergist who has put Tomato onto a new regimen of meds. I feel like a pharmacist again dishing out mammoth amounts of drugs day and night but it can't be helped. I ordered the 2 de-sensitisation medications. We will come up with the R32 000 when the time comes. I am remaining positive.
On 22 July we started the following:
- Sandoz Flucloxac 250 for 5 days
- Panafcort 5mg for just over a week
- Purbac 240mg twice a day for 4 months
- Singulair 5mg once a day for 6 months
- Adco-cetirizine 10mg for 6 months
No new staff infections since she started the above, so it looks like the antibiotics are working.
Unfortunately Tomato has gone into a bit of a downward spiral and wouldn't bath or allow me to put any creams on her last night. Tonight she allowed me a little bit but then asked me to stop. The Allergist and I made a pinky promise with her last year that we would no longer do anything TO her, only WITH her, so she is in charge. This has been extremely difficult for me as I know that her skin gets worse without the Vaseline and cortisone cream, but I have had to respect her wishes and let her be. She is such a sensitive child that I have to respect her boundaries. Amazing the lessons I have had to learn during this journey.
I felt so bad today when I was showing Tomato some coconut oil and accidentally said, "this is also used by people with normal skin." As I said it I regretted it and hoped she hadn't noticed. She said nothing at the time but a bit later she said to me "I wish I was normal too." A piece of me died inside.
AUGUST 2014
Well we're only one week into August and the wheels are falling off. Tomato was sent home from school today due to scratching and bleeding. Tonight she looked like this:I have no idea what is going on with her, she is having the antihistamines and antibiotics as mentioned last month. Just hoping that whatever it is, it gets better by the morning.Yesterday she had to take her socks and shoes off and she was so embarrassed because then all the children could see her legs and the marks on them. Heartbreaking for her.
Second week into August and her skin is still itchy and red and although she is ok in the day, she is still going crazy at night, so weird how it flares up at night. We continue religiously with the meds and cortisone cream and Vaseline.
It is an ongoing battle. The other day I said something about "that's it, I give up" and she said "you promised you'd never give up on me." I was talking about something else, but so scary to see how quickly she thinks I would give up on her! I explained that I wasn't referring to her or her skin, which made her very happy. Such big issues to deal with for such a small child.
Even her little brother helps with "putting on cream" and he does it so gently. This is a disease that affects the WHOLE family.
I had such a wonderful experience last week, when I met a lady from a French-based company that makes products for skin problems. The product is called Avene and will only be available in South Africa from 2015. I am so excited by Avene that I have devoted a blog post to this exciting new product. Here is the link to the blog post: Is Avene the Miracle that we have been waiting for? Click on the video, it looks amazing!!
We have started using the products and I will, as always keep updating our progress.
*******
Unfortunately, Tomato had another flare-up, and with flare-ups come increased anxiety, which increases itching and therefore scratching. She went back to her emotional state of screaming when I went near her and she refused even to use Vaseline. Slowly I coerced her back to using Vaseline. She refused to use the Avene creams and special water but she promised to try again when it is warmer (the spray is pretty cold in winter!). We were warned that coming into spring the pollen count would increase and her skin would get worse.
I did however glean some great tips from the blog of the lady who took her daughter to Avene France on keeping skin hydrated, incessant washing of hands and distraction techniques which are helping a bit with the scratching (while I'm with her at least.)
SEPTEMBER 2014
The scratching and itching is getting worse and the affected areas are growing in size (as was predicted). Tomato has requested that I do some wet wrapping this week to try to hydrate her skin - difficult when the weather is so chilly! I'm so excited that warmer weather is coming! We are going to the Allergist next week where Tomato, together with her ongoing treatment of daily anti-histamines and low dose anti-biotics, will start the year-long desensitizing program for her mould and grass allergies. There is a 75% chance that it will work.Today Tomato, who has taken up Judo as an extra mural, won a little award for being the only one who could perfectly perform a move that was requested. Afterwards she was given a prize (an Aero) but because she was sweating, scratcing like crazy and making her skin bleed, instead of a ceremony in front of her little peers, it had to be done quietly afterwards with just me and her siblings present. She ran into the parking lot and tried to show as many friends as possible that she had won a prize. It just kills me to see, even her achievements, marred by this skin issue. Self-esteem is so hard to build under these conditions.
 |
| To me it looks different |
 |
| My strong little girl |
I went to see the sports co-ordinator at Tomato's school as their physical activity program is negatively affecting Tomato's skin. The lady was very kind and understanding and we came up with a workable relationship which will hopefully assist. She suggested that tennis may be too warm and that we should go back to netball as it takes place in a shady spot away from the grass. Tomato will be in control of what she can and can't do.
The other night she was going crazy from the itch and I remembered reading on the blog of the mom who went to Avene, that we should cool the skin. So I did what she suggested, which was to wet the skin with Avene water, place tissues over the affected area and spray again and leave for a few minutes. Poor Tomato looked like a mummy but she lay there and felt much better afterwards.
On Saturday she went to a lovely party where they baked. She loved it! But the cake together with the party pack sweets and chocolates put her into a downward spiral and we battled to bring her skin back into the "manageable" zone.
Everything we do, we need to bear her skin in mind. When.will.this.end?
OCTOBER 2014
This has been a very rough month for Tomato. Her skin has been sore and inflamed. She wasn't looking good and she was feeling very lethargic. She complained of headaches and a sore stomach and then vomited on the way to school. I kept her home for a few days and she felt better but after 2 days, I decided to take her to the emergency room where they did some blood tests and her protein levels were 284 instead of below 5. She was admitted and put onto a drip with a broad spectrum antibiotic to reduce the infection. The Paediatrician said he thought it was a UTI so off she went for xrays and a sonar but nothing showed up. Blood and urine were taken and cultures were grown.I know it sounds strange but I was quite excited!! I have always said that in my (non-medical) mind, that there is something underlying that is causing her skin irritation. Perhaps the protein, infection is what she has been suffering from and it has now just gotten worse. So I couldn't wait to find out what sort of bacteria it was, and if it could have been present for a long time in her system. I thought that I saw a light at the end of the tunnel....... I was wrong.
After 4 days in the hospital the Paediatrician released her and told us that no cultures grew because she had been on a low dose of antibiotics for her staph infection, which obviously kills off the growth of the bacteria under laboratory conditions. I was annoyed because as a lay person I can understand that, and I mentioned that she was taking Purbac for an extended period when she was admitted, so surely this was an exercise in futility, for which the medical aid, fortunately paid.
After getting home and completing a 5 day course of antibiotics, Tomato started to take a downward turn, homework became a battle and I could see her skin was reacting and she was refusing to allow me to put the Vaseline on. I called the Allergist and she suggested we do more bloods to determine her levels. I asked if we could check her protein and blood sugar as well, as she is addicted to sugar and throws tantrums when she can't get her hands on it. I may have mentioned this before, but sugar is limited in our family and she has even gone so far as to eat icing sugar and ordinary sugar in desperation! Twice before we have done the blood sugar test, but both were messed up at the lab, so I jumped at the opportunity.We went through the Emla patch palaver and I raced her through to the lab and it went pretty smoothly. I then phoned, texted, phoned, phoned and phoned again to get results from the Allergist. I eventually only got results when I burst into tears on the phone with the receptionist and asked if the results could be sent to me so that I could take then to another doctor! The Allergist then phoned me back.
A friend of mine has a friend who almost died from an auto-immune disease last year and she contacted John of God and he did a long distance healing and her life was spared. I had seen this method on Oprah many years ago, but I kept thinking, how do I contact John of God and say that I want him to heal my daughter, when she ONLY has Eczema? Surely it is not in the same league as someone who is dying? But to be honest, it does feel like Eczema is terminal. Apologies, inflammatory comment, but that's how I feel.
NOVEMBER 2014
Tomato's blood tests were incomplete (again) so we are waiting for further results. (The bloods cost R3,500 which is not claimable). By this time, Tomato was asking me to please give her the scissors because she wanted to cut her skin off and she again told me she doesn't want to be here any more. That was when I sobbed on the phone, which at least brought about some action from the allergist, as I am NOT a crying sort of person.
I counted over 150 boils, all filled with pus, some huge, some tiny, all over her body. Not fun. Nights returned to screaming and wailing and her refusing to bath as the water would feel like it was burning her and made her skin worse. Often I would resort to using Avene water to just cool her off and try to reduce the inflammation but she would also only allow that for very short periods. Again she begged not to have to walk downstairs to dinner because her boils were erupting and it was extremely painful. Home life became dark again for this poor child (and the rest of the family). Trying to get her to focus on doing any homework was pure torture and we would end up screaming at each other. No matter what I used to incentivize her, she just wouldn't do it.
Eventually on the 11th we saw the Allergist and she prescribed more antibiotics, this time Augmentin for 7 days, 2x per day to get rid of the staph infection. Again the entire family has to bath in Bio-scrub soap to remove the bacteria and use Bactroban in our nostrils. Lettuce got a huge boil on the back of his leg, it was disgusting and oozed pus for days.
Tomato's blood tests were incomplete (again) so we are waiting for further results. (The bloods cost R3,500 which is not claimable). By this time, Tomato was asking me to please give her the scissors because she wanted to cut her skin off and she again told me she doesn't want to be here any more. That was when I sobbed on the phone, which at least brought about some action from the allergist, as I am NOT a crying sort of person.
 |
| Some of the tiny boils |
I counted over 150 boils, all filled with pus, some huge, some tiny, all over her body. Not fun. Nights returned to screaming and wailing and her refusing to bath as the water would feel like it was burning her and made her skin worse. Often I would resort to using Avene water to just cool her off and try to reduce the inflammation but she would also only allow that for very short periods. Again she begged not to have to walk downstairs to dinner because her boils were erupting and it was extremely painful. Home life became dark again for this poor child (and the rest of the family). Trying to get her to focus on doing any homework was pure torture and we would end up screaming at each other. No matter what I used to incentivize her, she just wouldn't do it.
Eventually on the 11th we saw the Allergist and she prescribed more antibiotics, this time Augmentin for 7 days, 2x per day to get rid of the staph infection. Again the entire family has to bath in Bio-scrub soap to remove the bacteria and use Bactroban in our nostrils. Lettuce got a huge boil on the back of his leg, it was disgusting and oozed pus for days.
The bloods showed that Tomato has a MILD allergy at the moment to mould and grass!! Heaven knows what she would look like if she had a severe allergy! I was not happy. I told the Allergist that we can't keep going on like this, we are just putting a band aid on the problem, hoping it will go away but nothing is being done to prevent it occurring in the first place! She has now referred me to a retired professor who sees extraordinary patients, so we will go and see him at the end of the month. This poor child has been through so much and I feel so desperate for her. I'm trying to dig deep and show her how positive I am about this professor, but realistically, what is he going to tell us that we haven't heard before? I'm tired of getting excited and getting her excited only to be let down again and again. BUT I told her I won't stop until I find a solution, so we will go and see this guy.
A friend of mine mentioned that her child is going through puberty and the hormones are making her go through crazy mood swings. I thought to myself, Tomato is 8½ years old and she has never been able to enjoy her childhood, she has had manic mood swings because of her skin. It breaks my heart. Maybe it's time to swallow my pride and start fund-raising for the trip to Avene in France for next year. It will probably cost in the region of
R70 000 for the two of us for 3 weeks, which is out of our price range. We have spent almost half a million Rand of our own money on this disease and we are still nowhere.
While waiting for our appointment with the Professor, Tomato's skin got steadily worse. It got so bad that I took her to a man who does Body Talk. He cleared her energy and put her onto some supplements, but we're not seeing any results, if anything, she's getting worse. Some of the supplements are R450! I battled to get her into the bath, but I did and added avocado oil as apparently that is a natural anti-itch oil and her skin did feel a bit better but she screamed blue murder and wouldn't stay in the bath for any length of time. When she got out she was shaking and sobbing and proceeded to scratch herself until she bled (like a broken record, bath, itch, scratch, bleed and again and again and again.....)
I was at the end of my rope! I was trying to keep it together and not doing a very good job because of my personal struggle with my painful autoimmune disease that I have developed due to lack of sleep from this dreaded Eczema! So I got mad and told her that she HAD TO STOP SCRATCHING!!! I sat her down and told her that she was old enough to see the damage that scratching did. She needed to keep the cotton gloves on to help her, she needed to stop screaming and waking up her brother and sister all through the night. I was angry. Angry at her, angry at life and angry at Eczema for making my life so hard. I then told her that I would never give up on her and I would keep trying to find an answer but she had to do her part!! I left her, feeling terrible, knowing how hard her life has been, but also just feeling totally out of control and not able to find someone to help her. I went downstairs close to 10pm to have dinner so that I could take my medication, knowing that we had to get up at 5.30am so again I wasn't going to get much sleep. When I went to bed I found this note on my bed. While I understand that she is manipulating me, it still broke my heart. Other families are not going through this.
Then, on a friend's advice, I contacted a spiritualist to do a cleansing of Tomato and Hubby and myself, as I was told that perhaps a curse had been placed on us. As riduculous as this sounds, we are so desperate for a solution, we'll try ANYTHING. I can only describe my life as trying to walk through wet sludge that comes up to my waist, a slow, hard slog just to put one foot in front of the other. So we went ahead with this "spiritual cleansing" but there was no immediate change.
On the 27th we got up very early and drove to Alberton (1½ hours drive) to see the Professor. The only appointment we could get was at 8am, so we got a very early start. What he said was very interesting. Firstly, he diagnosed her after 5½ years - she has Severe Atopic Dermatitis. I had obviously worked that out over the years, but because the symptoms and patches presented themselves differetently and kept changing, I was relieved to finally be told what it was, as the doctors had also thought at one stage that it was psoriasis. The Professor ruled that out.
He looked at her blood tests and allergy tests and was concerned that more allergy tests weren't done. So he sent her for more pin-prick allergy tests with his nurse. She is highly allergic to fungal spores (mould) and mildly allergic to grass pollen. Wheat reflected as an allergy, which didn't show up in any previous tests, as well as corn pollen and potatoes. Due to her anxiety and quality of life, he suggested that we not remove wheat and potatoes from her diet, but rather reduce them where possible. I agreed with this sentiment.
He then told me that he does not believe that she has ADD or ADHD, but rather that she is suffering from chronic sleep deprivation, which is causing her to struggle with her concentration. Again, as a mother, I knew that, but this was the first healthcare professional to tell me that this was the case. He mentioned that she may grow out of it by age 12 but until then, recommended that we continue with the Vaseline twice a day. He told me to stop all current anti-histamines and the Advantan Fatty Ointment (steroid/ cortisone cream) as it was getting us nowhere except thinning her skin and she was becoming resistant to the steroids, which is why she has a red, sunburnt-looking skin. He also recommended that she not take any more cortisone tablets as these have long-term side effects. However she needed to go back onto Purbac (oral antibiotic liquid) indefiniately and try another anti-histamine Allecet tabs, 10mg at night, which he prescribed. He said some Eczema sufferers take an oral antibiotic for the rest of their lives. I was not happy.
A friend of mine mentioned that her child is going through puberty and the hormones are making her go through crazy mood swings. I thought to myself, Tomato is 8½ years old and she has never been able to enjoy her childhood, she has had manic mood swings because of her skin. It breaks my heart. Maybe it's time to swallow my pride and start fund-raising for the trip to Avene in France for next year. It will probably cost in the region of
R70 000 for the two of us for 3 weeks, which is out of our price range. We have spent almost half a million Rand of our own money on this disease and we are still nowhere.
While waiting for our appointment with the Professor, Tomato's skin got steadily worse. It got so bad that I took her to a man who does Body Talk. He cleared her energy and put her onto some supplements, but we're not seeing any results, if anything, she's getting worse. Some of the supplements are R450! I battled to get her into the bath, but I did and added avocado oil as apparently that is a natural anti-itch oil and her skin did feel a bit better but she screamed blue murder and wouldn't stay in the bath for any length of time. When she got out she was shaking and sobbing and proceeded to scratch herself until she bled (like a broken record, bath, itch, scratch, bleed and again and again and again.....)
I was at the end of my rope! I was trying to keep it together and not doing a very good job because of my personal struggle with my painful autoimmune disease that I have developed due to lack of sleep from this dreaded Eczema! So I got mad and told her that she HAD TO STOP SCRATCHING!!! I sat her down and told her that she was old enough to see the damage that scratching did. She needed to keep the cotton gloves on to help her, she needed to stop screaming and waking up her brother and sister all through the night. I was angry. Angry at her, angry at life and angry at Eczema for making my life so hard. I then told her that I would never give up on her and I would keep trying to find an answer but she had to do her part!! I left her, feeling terrible, knowing how hard her life has been, but also just feeling totally out of control and not able to find someone to help her. I went downstairs close to 10pm to have dinner so that I could take my medication, knowing that we had to get up at 5.30am so again I wasn't going to get much sleep. When I went to bed I found this note on my bed. While I understand that she is manipulating me, it still broke my heart. Other families are not going through this.
 |
| Dear Mom I am sad. I thought you would not give up but it looks like I am too much trouble. Love Tomato :-( |
Then, on a friend's advice, I contacted a spiritualist to do a cleansing of Tomato and Hubby and myself, as I was told that perhaps a curse had been placed on us. As riduculous as this sounds, we are so desperate for a solution, we'll try ANYTHING. I can only describe my life as trying to walk through wet sludge that comes up to my waist, a slow, hard slog just to put one foot in front of the other. So we went ahead with this "spiritual cleansing" but there was no immediate change.
On the 27th we got up very early and drove to Alberton (1½ hours drive) to see the Professor. The only appointment we could get was at 8am, so we got a very early start. What he said was very interesting. Firstly, he diagnosed her after 5½ years - she has Severe Atopic Dermatitis. I had obviously worked that out over the years, but because the symptoms and patches presented themselves differetently and kept changing, I was relieved to finally be told what it was, as the doctors had also thought at one stage that it was psoriasis. The Professor ruled that out.
He looked at her blood tests and allergy tests and was concerned that more allergy tests weren't done. So he sent her for more pin-prick allergy tests with his nurse. She is highly allergic to fungal spores (mould) and mildly allergic to grass pollen. Wheat reflected as an allergy, which didn't show up in any previous tests, as well as corn pollen and potatoes. Due to her anxiety and quality of life, he suggested that we not remove wheat and potatoes from her diet, but rather reduce them where possible. I agreed with this sentiment.
He then told me that he does not believe that she has ADD or ADHD, but rather that she is suffering from chronic sleep deprivation, which is causing her to struggle with her concentration. Again, as a mother, I knew that, but this was the first healthcare professional to tell me that this was the case. He mentioned that she may grow out of it by age 12 but until then, recommended that we continue with the Vaseline twice a day. He told me to stop all current anti-histamines and the Advantan Fatty Ointment (steroid/ cortisone cream) as it was getting us nowhere except thinning her skin and she was becoming resistant to the steroids, which is why she has a red, sunburnt-looking skin. He also recommended that she not take any more cortisone tablets as these have long-term side effects. However she needed to go back onto Purbac (oral antibiotic liquid) indefiniately and try another anti-histamine Allecet tabs, 10mg at night, which he prescribed. He said some Eczema sufferers take an oral antibiotic for the rest of their lives. I was not happy.
I said that I understood that there was nothing that anybody could do about her skin, but surely there was a way to stop the itching as it was keeping her awake all night, thus the exhaustion that she has experienced for years. There is nothing apart from drugging her and there are no sleeping tablets for children. We have tried Melatonin in the past but it doesn't really help. He mentioned that her scratching has probably become habitual, so even if she is not itching, she is still scratching. He then mentioned that she may benefit from bi-weekly photo-therapy which is where ultraviolet light is used to heal the skin.
Although I am grateful to the Professor for giving me hope regarding no longer taking cortisone or steroid creams and tablets, I'm also disheartened that there is no relief from this disease that has a hold on our whole family. I also know that we only went onto oral cortisone due to the fact that she was unable to walk, so as much as I like the idea of her not consuming that poison, I know that it definitely helps with her skin when we have nowhere else to turn.
I was lucky to get an appointment for a photo therapy session for the end of January as there was a cancellation, otherwise we would have waited for 4 months instead of 2. Maybe this will help. All I know is that there is only one place in our area that does this therapy and it is located in Pretoria, which is an hours drive from here. Trying to take Tomato there twice a week is going to be a huge logistical challenge especially since I work and have 2 other children, but I promised her I'd never stop looking for an answer, and maybe this is the answer, so we'll give it a bash. Fortunately she will probably enjoy this treatment as it is not invasive, she just needs to lie back while the light goes on her skin.
Although I am grateful to the Professor for giving me hope regarding no longer taking cortisone or steroid creams and tablets, I'm also disheartened that there is no relief from this disease that has a hold on our whole family. I also know that we only went onto oral cortisone due to the fact that she was unable to walk, so as much as I like the idea of her not consuming that poison, I know that it definitely helps with her skin when we have nowhere else to turn.
I was lucky to get an appointment for a photo therapy session for the end of January as there was a cancellation, otherwise we would have waited for 4 months instead of 2. Maybe this will help. All I know is that there is only one place in our area that does this therapy and it is located in Pretoria, which is an hours drive from here. Trying to take Tomato there twice a week is going to be a huge logistical challenge especially since I work and have 2 other children, but I promised her I'd never stop looking for an answer, and maybe this is the answer, so we'll give it a bash. Fortunately she will probably enjoy this treatment as it is not invasive, she just needs to lie back while the light goes on her skin.
As December is approaching and Tomato and her siblings are on school holiday for a month, I am toying with the harsh reality that we may need to implement a harsh "Eczema diet" whereby we eliminate pretty much all the food we're currently eating and go onto a restricted organic vegetable and organic meat diet. I would have to do this over the holidays to ensure compliance, but my brother and his family are coming to stay and there is Christmas dinner etc etc but Tomato is now so bad, I'm thinking this is the only solution. Hubby is NOT happy to do this. I am desperate.
On Sunday 30th November Tomato was battling with the itching. She loves having play dates with her little friend at a local coffee shop that has a playground, so she asked if I would set up a play date with her friend, which I did. Because she hadn't bathed in over a week, I told her that she had to bath before we went out to meet her friend. She was very stressed but I eventually coersed her by making it special, saying she could bath in my bath, I would be there the whole time, I put on relaxing music and she tentatively got in. She was in the bath for no more than 2 minutes before the screaming started and she had scratched her skin raw before I was able to get her towel! I dabbed her dry as I had been taught, put some Vaseline on and put her in front of the TV to distract her from scratching. It didn't help. Within minutes she was bleeding and when it was time to go out to see her friend, she was too sore to get off the couch and she couldn't stop crying. Often I wonder if her behavior is just for attention, but today I realized that she would have had to be very sore to cancel her play date with her best friend. This was the beginning of an "all-fall-down day." I went upstairs and cried and cried and cried.
I consider myself to be a very strong person, but the past few years have taken their toll on all of us and I was drowning. This is the day I decided to reach out and join a support group, which I had never even considered before. I needed to vent my anger to other families going through the same horror that we were living through, as I was ready to give up. I felt that I wanted to run away and never come back. The helplessness of our situation was weighing so heavily on me. I couldn't even see through my tears. I got into bed in the middle of the day and left hubby to feed, bath and put the kids to sleep, I was exhausted and I had been told that there was no hope by all the medical professionals. Tomato had told me that she didn't want to live anymore and I totally understood how she felt, but hearing those words from your child is heart-breaking. The situation was hopeless and depressing.
BREAKING NEWS!!!!!
I DON'T WANT TO SPEAK TOO SOON BUT
WE HAVE FOUND A SOLUTION!!!!
I am compiling a blog post dedicated to this new solution - woohooo!
See our progress here at The Day I Found Dr Richard Aron and Our Healing Journey Began
See our progress here at The Day I Found Dr Richard Aron and Our Healing Journey Began
Subscribe to:
Posts (Atom)