So it has been a long time since I last wrote about the eczema hell that my family have been through. As I write this I'm all too aware many people in the world are living in such horrific circumstances that it makes me feel shallow calling it 'hell'. But our world was for that time of "eczema hell" almost totally self centered. Looking after Emmy and her skin occupied much of my time and alot of my mental attention.
Her eczema really started to manifest itself strongly from her being 7 weeks old. This is a photo of her at 8 months during a typical night.....
For 2 years I hardly slept, really, I hardly slept. Probably the longest stretch I ever got on a good night was an hour and a half (with 3-4 hours of pacing with a screaming baby in beteween) Usually her sleep cycles were around 40 minutes before coming into light sleep and totally waking up due to itching. Poor thing look at her skin, it drove her demented, its no wonder she couldnt sleep. The emotions you go through are from nurturing caring mother to sheer desperation just wanting the noise to end and to just somehow sleep. I don't want to write about it anymore as it was just awful and it makes me very sad to think about it.
So what practically did we learn that we can pass on....
We have a brilliant dietician and paediatrician that support us. I exclusvely breastfed for 6months. From 4 months I knew when I consumed egg or milk around 3 hours later Emmy's dreaded itch began. Although our medcal team are brilliant - they didn't believe this would affect Emmys excema the way it did. So little is supposed to transfer into mothers milk but I can assure you it most certainly does. Without any doubt.
So I completely cut out eggs and dairy. At 6 months she had a pin prick test and bloods done. Sure enough milk and egg showed. Not as strong as we thought it would but her physical reaction to it was alot stronger than her allergy test would indicate. From 6 months she has had a brilliant appetite but if I, in a moment of weakness, had a piece of cake then I would have the constant disturbed night time scratching and 3-4 hours of pacing and screaming (not just crying, inconsolable screaming).
So DIET has been all important to us.
As she got older on occasion she has been given dairy directly (on one occasion by my mum "ah, it won't hurt her that much, just a little will be alright....") As well as the severe hives, swelling and itching her behaviour was very extreme. Crawling into cracks between chairs, refusing to come out, dragging herself along the floor, headbutting walls, scraping her head off the walls and floor. She was 18 months old. And I include this as she has only behaved this way when exposed to foods she has a supposedly 'low to moderate' allergy to. There is, in my opinion, a definite connection even though our dietician and paediatrician didn't think this connection was there.
A couple of my friends asked me if I would stop breastfeeding and I considered it but as a family we felt the benefits still far outweighed the negatives. She just would not accept infant soya (we have huge reservations about it anyway but I was so desperate I tried to introduce it more than a few times). There is one other (nasty tasting) milk infant substitute but if its not introduced very early on it isnt accepted very easily by the little one. Very few options for a parent in this situation.
It is really important to say that anaphylaxsis (life threatening) allergies are on the rise. Latest research indicates that when an allergy manifests itself and the food is eliminated and the child is never exposed to it that if an accidental exposure later occurs the likelihood of anaphlaxsis is increased.So tolerance of a food is what the doctors are aiming for. So there may be a minor reaction but this is preferable to a life threatening reaction. After months of not eating egg and milk when my dietician explained this research I did begin to introduce a small amount (ie a small amount of milk in 3 mugs of tea/day - no more latte's for me) into my own diet. So Emmy had a small exposure without eating it directly. It affected her skin but I didn't want to inadvertently be the cause of her having an anaphlactic reaction to it. For this reason it is important to work with a dietician if you are thinking about eliminating a food type completely.
So my diet and Emmy's diet have been very important factors in our managing the severity of her excema.
My next blog posts will be about the role of the skin protein FILLAGRIN and importantly the practical things we have found that help our management of the excema. It is still part of our daily lives (and always will be) so needs constant maintenance, without which very quickly her skin would deteriorate. BUT she is 2 years and 4 months now and I have started to get more sleep. I can get a run of 5 hours now which is just amazing. That light at the end of a dark tunnel is getting thankfully beginning to get brighter!