My adventures into Motherhood
Mikala’s eczema made itself known when she was about four months old. Now she’s nearly a year old and her skin has been perfectly clear for months with the odd flare up from teething and colds. What have we been doing in the meantime? It hasn’t been easy getting to the bottom of her itchiness, but with some determination we got some answers!
Things got really bad when we were still in the Putney house and we were trying to pack for our house move. Every time we shifted boxes and opened cupboards her eczema got worse. She was completely covered in the red rash with rough bumpy skin and she was extremely cranky and hardly sleeping. Which meant I was extremely cranky and hardly sleeping! Once we got to the stage where her head was crusty with weeping infected eczema we went to the doctors for antibiotics and some steroid cream. The antibiotics worked a treat on the crustiness, but the steroid cream didn’t totally eradicate the eczema rash, and the itching was still ever present, even on patches of clear skin Kala wanted to scratch and scratch and scratch until it was red and rashy again. In the meantime I was reading up on everything I could about baby eczema. And after reading Dr Rodney Ford’s book ‘Eczema. Cure it!’ I cut eggs, dairy and peanuts from my diet and switched to soy milk, hoping that I might see some improvement in Kala’s condition.
I went back to the GP, this time to the doctor who had a special interest in dermatology. And I outlined everything I was already doing for Mikala; bath additive, lotion as soap substitute, steroid cream and moisturising with specialist creams, restricted diet. What did she have to add? Not much…. She gave me a referral to the Kingston Hospital dermatology unit, but the earliest I could get in was 41 days from my referral, then when I said I wanted to have Mikala tested for allergens to figure out what her triggers were, she just said I could discuss that with the dermatology unit who would probably refer me to a paediatric allergist. 41 days?!?! That is an incredibly long time in baby-time, and too long for me to wait with a suffering baby. When I want answers I really want them NOW. So I got Nathan to ensure Mikala was named on his work insurance and to get me a pre-approval for a paedeatric allergist.
Dr Robert Boyle of the Harley Street Clinic works on a Saturday from the New Malden Diagnostic Centre, perfect for its closeness to Kingston where we had now moved to, and because I could leave Sof with Nathan while I took Mikala to her appointment. I’m so glad I took action and didn’t wait for the NHS. My first consultation with Dr Boyle was very educational and we talked at length about how eczema works, what the common triggers in babies are, and how their immune system will hopefully develop so that they grow out of their allergies over time. I had been keeping a food diary which I showed to him so he could see the typical things I ate and point out any red flags. That day Mikala’s eczema was so severe Dr Boyle didn’t think he could do any skin prick testing because she didn’t have any clear patches of skin to see a clear test. But I begged him to try a few and we did a small test on her thigh for eggs, dairy and soy. Turns out she was positive for all three and the egg reaction was so severe, she came out in hives! She was very agitated and squirmy as she struggled against me desperately trying to rub and scratch all over. Dr Boyle was visibly concerned and sent his receptionist out immediately to get some citirizine anti-histamine to bring down her reaction. After the dose, we stayed for 20 minutes in reception so that Dr Boyle could check on Kala again before we left and make sure that she was ok.
The following weekend Kala and I attended the ‘Allergy and FreeFrom show’ which is an information and food hub for allergy sufferers. I found the eczema talks quite basic and not very helpful, but the sheer volume of food product available without allergens in them was very enlightening! I ate my way round the stalls trying just about everything, picking up leaflets for everything that actually tasted good. Thank goodness Kala isn’t allergiv to wheat, because the alternative products were dismal. I can’t believe people have to put up with such awful tasting food! With Kala’s combo of allergens, the things I miss the most are desserts. There are no good desserts that don’t have some element of egg or dairy in them. How happy was I to find Food Heaven and pudology? And Booja-Booja ice cream which is made with cashew nuts! And Hale & Hearty make yummy things too, the chocolate and date flapjacks are always in my cupboard 🙂 By contrast, cookies and cakes were either dense and tasteless or rock-hard and dry. There was a huge line waiting for Ms. Cupcake, which by the time I got to the front and sampled one, I felt everyone’s taste buds were completely misplaced – or perhaps they’d never been exposed to how good a full-fat-full-allergen cupcake can be?
Two weeks later, the super-large tube of steroid cream we’d been instructed to slather her in had worked a treat and she was much less rashy. I’d also stopped having any soy and had been trying out all sorts of alternative milks before settling on rice milk. Dr Boyle was able to do a whole bunch of tests on her arms and we found that she was additionally allergic to peanuts (but not cashews) and sensitive to dustmites as I’d suspected. I felt good, because I had definitive answers, and an action plan. Cleaning the house became a whole lot more important, so I vigilantly vacuum twice a week and damp dust all surfaces once a week. Cleaning the house is definitely my least favourite job, but now we have a routine and on a Sunday morning Nath takes both girls out to the park for a few hours and I clean and dust and vacuum like a madwoman while there is no-one around to undo all my hard work.
The reason why I wasn’t seeing much improvement in Kala’s level of itchiness was because I had simply swapped one allergen for another – soy for dairy – so about a month after I also gave up all soy products we started to see Kala’s skin really clear up. However, the clear patches of skin were still itchy under the surface and even when she looked quite good, we still had her in mitts and she was tightly swaddled to go to sleep. During this time we even employed the use of tape because she was getting so strong and wriggly! And the appointment for the NHS dermatology unit finally rolled around, so we headed to Kingston Hospital with plenty of time to spare and then proceeded to wait for nearly an hour, to be seen for roughly fifteen minutes. I gave the doctor my rapid-fire summary of Mikala’s eczema journey so far and then we stripped her down so he could see for himself. She still had quite persistent eczema on her scalp and behind her ears was her favourite place to scratch. It was quite hard to clear this patch of eczema when Kala kept making it worse every chance she got. His diagnosis was her eczema was wholly related to food allergy! Very interesting considering it was the opposite of what the last consultant had told me. I was prescribed a huge tube of level three steroid cream, and then NHS hoop number one was done.
At ten months of age, we finally got to NHS hoop number two. A peadeatric allergist (equivalent to Dr Boyle, who I had paid to see at four months old) re-tested Mikala for common allergens and took note of the size of the raised welt. Her blood tests also confirmed the allergens and whether she was deficient in any essential nutrients because I had already been on a restricted diet and alternative milks without the consultation of a nutritionist. My big success at this appointment was her steady weight gain, albeit only charting along on the second percentile, but at least she hadn’t dropped off the chart completely! While we spent the better part of the day at St George’s Dragon centre, we managed to have some sneaky face time with a nutritionist who quickly gave me some leaflets on calcium requirements and dairy, egg and nut allergies. She also gave me a tin of Pepti2 alternative formula to try with Miki. This turned out to be a disaster – she didn’t want to take the bottle and she hated the taste of it! Despite my attempts to sweeten it up with coconut milk, she only ever had a few sips from her sippy cup each morning, preferring to thirst until I offered the boob. After a few weeks of this milk I noticed that Mikala’s eczema and itchiness was coming back. She was scratching in her favourite spot again on her head where food allergy makes itself known most commonly. After a quick call to the nutritionist, I’ve stopped using that formula and have a prescription for neocate, an amino acid based formula that is supposed to taste even worse than the Pepti2 I stopped using. I haven’t started using this yet and I’m not sure I will even get around to cracking open one of the eight tins of 0-12month neocate. Not just because Miki will be 12 months in a few days, but also because she is supposedly not allergic to soy anymore. So I’ve started re-introducing soy into her diet, with no adverse effects so far. And once she is one year old, she can have a follow-on soy milk. But in the meantime, it’s a lean Christmas for me this year, no cheese, no puddings, no custard, no chocolates! So wish me luck for weaning in the new year, and hopefully I’ll be back to eating all my usual treats soon…..perhaps before my birthday, which we are spending at St George’s hospital going through NHS hoop number three – the nutritionist clinic! (To be cont…..)