Thursday, 10 July 2014

Setbacks, spring, and success!

Following the initial success of their treatments, the roads to recovery diverged for my children.  They were still travelling in the same direction, but the smoothness of the ride and the speeds at which they were going changed.  So I'm going to split up the reporting while I take you through spring, beginning with Iris, as hers has been the more straightforward and easiest of the two journeys.


Iris has only had one proper flare in the five months that she has been under Dr. Aron's care.  The backs of her knees kicked off in conjunction with a fever bug she picked up in the middle of March. Compared to previous flares, this was NOTHING.  The spread was minimal and the itchiness was mild.  Still, it bugged me, and increasing the applications from three times a day (where we were at the time) to four to five didn't seem to be shifting it.  So, we contacted Dr. A, sent a photo, and asked for advice.  Strangely (or so I thought at the time, still not fully cognizant of Dr. A's brilliance), he recommended Aqueous Calamine Cream, which can be bought for a couple of quid over the counter at any pharmacy. To say I was sceptical would be a massive understatement, but of course we gave it a go.  Three times a day for five days.  The backs of her knees dried right out and I was so sorely tempted to put diprobase or some other moisturiser on them, but she wasn't complaining and that wasn't part of the procedure, so I waited.  Lo and behold, within TWELVE hours of reapplying the Aron mixture, the eczema had gone and her skin was perfect again.  

And that has been it in terms of proper flares.  She has had a tiny reaction to suncream on her arms, which lasted less than twelve hours--we put her cream on after the bath and the next morning there was no sign of rash.  In the intervening four months since this flare, she has worn (a different) suncream, had bare arms and legs at school for months, and accidentally ingested nuts, resulting in an evening spent in A&E and her skin has reacted to NONE of it.  This was all unheard of in previous years--foods that she was intolerant or allergic to seemed to set off her eczema, bare legs at school were impossible with scratchy carpets and all the other little nasties that those buildings harbour, and suncream was a yearly battle.  Now she looks like every other kid.  Hell, her skin is BETTER than loads of other kids.  Who would ever have thought it?  

So spring was a non-entity for her.  By June of this year, we were told to step her down from the one application per day that she had been receiving through May to one app for every two days out of three.  


Bea has had a slightly rougher time than Iris, though at no point during any of her setbacks did she ever return to the levels of eczema that she was at before we started with Dr. A.  There was also a problem with her original cream mixture in that the steroid did not blend smoothly with the other components, and so it would be, for want of a better word, slightly lumpy.  These lumps appeared to me to be more prominent at the top of the pot of mixture and until we got to the bottom half of the pot, her skin would be fantastic.  We got through about three pots in the first six weeks before I noticed the pattern and informed Dr. A, who changed the steroid and increased the Diprobase.  

Her flares have mostly been confined to her problem areas: her wrists and lower inner arms, ankles, and neck.  She has, on one or two occasions, had minor flares on her legs and trunk.  Her whole body has never flared all at once like it used to.  All of these flares were easily traceable to either teething (she grew her last four molars between March and mid-May, so we're done with teething now, thank goodness!) or illness.  You know toddlers, they are more or less snotbags from winter through spring. With each flare, we increased the applications of cream for four to five days, sometimes a week, and then stepped back down when things were calmer.  By the start of May, and in conjunction with her new mixture, which seemed to completely topple the last of the eczema outposts, her skin was clear as a bell, everywhere, and she was on two apps a day.  

Here are photos of the girls taken on 31 May to be shared on the Facebook group: 


Three months after being referred, my girls were finally seen together at the hospital for their appointment with a dermatology consultant.  I brought in the photos of them before Dr. Aron's treatment and he was able to see in person the incredible change in their skin, having gone from dreadful to absolutely perfect (apart from mild sunburn, this was before I'd found the suncream that worked!).  He wasn't remotely impressed.  He didn't really seem to get it, if I'm honest.  I think he thought that perhaps their skin had just gone into remission on its own.  If anything he tried to warn me off using Dr. Aron because the cream was in pots and not pumps, which could spread germs.  He seemed to be missing the wood for the trees, and it was really disheartening.  I had hoped he would celebrate the obvious success we had had and show an interest in the methods used to get there, but he wasn't bothered.  He would not prescribe the components of the cream for me (I had hoped to cut costs by either mixing them myself or having them mixed locally) and insisted we needed to be back on the Epaderm and using different steroids as well as zinc bandages.  I nodded and thanked him for his time.  I can't see that we will be going back there.  


The hayfever season has been an interesting one this year.  I suffer VERY badly and this year has been exceptional.  I have exhausted all of the tablets available, nasal sprays, eye drops, and I have only been just about functional for most of June.  Normally, by July, things calm down a bit, but that has not been the case this year.  

Interestingly, the minor changes I have noticed in my girls' skin has coincided exactly with a massive hayfever attack on my part.  Iris has developed a strange dry rash around her mouth, complete with dry lips (she has never had eczema in this location), for which Dr. A has suggested Diprobase ointment, which works really well.  I am suffering similarly, with swollen, cracked lips and the feeling like I have a layer of skin that needs to come off.  I know that it is related to hayfever and pollen as the three times I have experienced this bizarre lip thing I have also struggled to keep the sneezing, snotting, watering, and itching in check.  

Bea has experienced some dryness on her face, though no rash.  She has also had some isolated red spots on her legs (and one or two on her arms) that have come and gone through the month of June.  Dr. Aron has said they look like isolated spots of infection, and has suggested treatments for them, which we have followed.  They always clear up and they don't seem to bother her, so I am trying to stay fairly relaxed about them.  Their appearance seems to coincide with rises in pollen levels too.  It's quite bizarre really, but reassuring to think that there is a known cause for these changes.  


So now we are pretty much up to date, and the purpose of this blog from here on out will be to check in when anything interesting happens or otherwise every two to four weeks.  Iris is due to come down to one app every one day out of three from August, and then I'm guessing that she will be off the cream.  Nothing seems to be penetrating her skin, and long may it stay that way.  However, we have a winter ahead of us, so I'm not proclaiming complete and total success until we've got through that without a total reversal of fortunes.  

Bea continues to get the odd minor flare on her wrists, largely because they are exposed and used often, what with being connected to her hands!  Dr. Aron has recently prescribed a teeny pot of a stronger mixture for these trouble areas, and after two days, her skin looks totally normal.  Not a surprising result from Dr. Aron, giving his track record, but a relief all the same.  Bea tends to itch in the heat, regardless of whether she has a rash, so we are taking summer with caution.  She is certainly the more sensitive of my two girls now, which I would at this point put down to youth.  As a result, we don't use suncream on her.  Thank goodness we don't live in a hot climate, so she can wear leggings all summer.  I've bought her some special sleeves made out of UV 50+ material, imported all the way from America, and they are brill for covering her arms during the midday period.  And she is always in a hat. We were going to drop her down to one app a day in June, but with suggestions that we've had that she's reactive to some pollens, Dr. A has said we should keep her on two apps for now.  Who knows what winter holds, but in the face of that uncertainty, I am reassuring myself that Dr. A has not failed us yet!

I realise our story has more than a bit of the fairytale feel about it thus far, what with the fortuitousness of our discovery of Dr. A and his treatment and the miraculous early results, and sceptics out there might be disbelieving.  Fair dues, I'm a sceptic.  But I'm also telling it straight.  It has only been possible for me write these posts up to date with an element of calm because I know where they lead, which is to this place of relative peace.  

But I'd be lying if I told you that I'm not still waiting for the other shoe to drop.  It's not like it was in the early days, when every little change in their skin, and certainly every flare, had me convinced we were going backwards.  The more time that passes and the further we get from those bad days of this past winter, the less I worry, the less I stress.  But it is still there occasionally, that little niggly thought in the back of my mind--what if we end up back there again?   Part of me can't believe that we could ever be totally free of the threat of eczema.  And to be honest, we probably won't be free of the threat: there is no cure for eczema and sensitive children are just that, sensitive.  Dr. A has said this, and I'm under no illusions.  So there will always be a threat.  

But that other shoe?  Whenever that rogue negative thought flits into my head, I remind myself that the blooming shoe is still firmly in its place, and it really doesn't show any signs of dropping.  I have yet to hear of Dr. A failing a patient.  And I have yet to be convinced that steroids are evil.  And I have now met so many parents through the Facebook group who are singing from the same hymn sheet as me, and their children are thriving when once they weren't.  And Iris appears to be in remission, or heading well for it.  And Bea is happy and growing and flourishing.  And the sun is shining.  And the birds are singing.  And we are living.  


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