We have entered a new phase in our eczema home. Our co-operative toddler, who used to love to help moisturise her itchy little body, has gradually been replaced. In her place is a fiercely independent little girl of almost 4 who knows excatly what she wants, or in this case what she doesn't want!
I appreciate that she knows her own mind, as I grew up afraid to say boo to a goose, but in this case she is saying No to something that is good for her. Moisturising her eczema skin is vital to keep it in it's current, excellent conditon. I don't want to battle her all the time so what can practically can I do to keep skin moisturised in 'sneaky ways'?!
This is how I moisturise the girls skin 'stealth style'...
Do you battle eczema? Or perhaps you have sensitive skin and one of your children battles eczema? I'm sharing 6 very valuable things we have learned over the past 4 years coping with my youngest daughter's eczema. Number one and number 3 may really surprise you!
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!
Should you have been travelling our Bornacoola road this late summer during the wee small hours you will no doubt have seen some unusual 'going's on'. My husband, in his underwear, (it was very hot!) desperately pacing the road - baby attached in pouch, still screeching. You will have probably heard me banging on the bedroom window, whisper shouting "put your trousers on" and "come back it'll wake the neighbours". In the future it will be a funny tale to tell but when you are in the throws of it night after night let me tell you it is anything but funny.
And so begins my little tale of how excema affects our daily family life.
Emmy was 6 weeks old when the cradle cap on her scalp began to take over her neck and face. I had heard of baby excema but naively thought it would pass when her 'hormones regulated themselves'. I have an arsenal of oils in my HQ (as you might imagine) and began using them systematically to see which was most effective at reducing the dryness, red spots, blotchiness and itching. Fast forward to now, 9 months old. The glands on the back of her head apparently associated with cradle cap and excema are always huge and swollen and she pulls at them alot. This is Emmy at 1.30 am during a 'flare up'.
It is impossible for her to sleep and is constantly itching her face and neck. During an especially bad flare up she is banging and scraping her torso and tops of her ankles and wrists off the bed. When it is like this the only thing for it, is to get up, say goodbye to my oh so comfortable bed and distract her. (Yes my name is Iggle Piggle, Iggle Iggle Iggle Piggle.....oh yes I'm singing too at this point) Aloe vera cut straight from the plant has been, by far, the most effective treatment. Mind the spiky bits. It's cooling and stops her scratching within 15-30 mins. Aloe Vera in pre-bought tubes I found were not effective. Anything petro-chemical based has so far increased the redness and symptoms.
24 hours after this peak it seems to begin to calm, the redness reduces and her skin forms crusts. I can now use avocado oil and my homemade 'Emmy's Balm' (based on my 'TLC Balm' but with a few adjustments). Even these annoy her skin during the middle of The Flare Up but do a very good job inbetween of keeping her skin moisturised.
We have had to increase bathing her since she loves tucking into her food and insists on smearing it all over herself (my heart sinks every time....) and I add some of my favourite avocado oil to the warm water. I use a teeny tiny touch of either my own 'Butter Me Up' or 'Bleating Lovely' Handmade Soap Bars. She gets smothered in the avocado oil whilst her skin is still a little damp. I have also started using soap nuts (they are really a berry) to wash our clothes and am trying it for home cleaning too.
Infants with excema and allergies are notoriously bad sleepers. During the particularly bad period I mentioned at the start I decided to unashamedly start co-sleeping. Emmy is awake every 2 hours without exception (during the good times I can settle her within about 10 minutes or so but during a bad time this waking will last up to 3 hours long- hence the desperate pacing) it has kept my family sane and mostly still smiling.
During this week she had bloods taken for allergy testing and we are awaiting an appointment with a dietician and dermatologist. I cannot wait to get the help. I have some new oils to try including an organic hemp oil (extra rich in ceramides), virgin organic olive oil and Aloe Butter (oh the dermatologist is just going to love me ;) ). Never has a young infant eaten vegetables so joyfully and this week she started taking her first steps so Miss Emelia is certainly developing ahead of her milestones and thriving despite this annoying itch.
Our little story will be continued and hopefully next time we might not be so 'sleepless in Bornacoola' .....Oh and don't be afraid to drive down our lane will you? It's much colder and any pacing is done in the kitchen (with the curtains drawn ;) )
Lucinda Lee, T/A Lucy's Soap Kitchen, Bornacoola, Co. Leitrim, Ireland. Est. March 2013
All of our products are traditionally made in small batches, from scratch, with completely natural, petro-chemical free, ingredients. They are created to be gentle to sensitive and allergy prone skin, however individual allergies may still occur. Discontinue use immediately if you experience any irritation. If you or your children have sensitive skin we recommend doing a patch test 24 hours before regular useage. Please contact us prior to purchase if you are aware of allergies & need additional product information & advice.