Friday, 5 November 2010

Sorry for going MIA

As you can imagine, moving a family of size is quite a challenge and very often the physical act of "moving" is only the tip of the iceberg. R likes to quote his favourite "80:20" rule, where 80% of the work takes 20% of the time and the remaining 20% the remaining 80% of the time! I have come to realise (yet again!) how apt this is.

We were all unpacked and ostensibly settled within a week, but the slow process of establishing local health, education and social links is taking a while. Having all four children under various consultants is a nightmare to say the least and unfortunately the most conveniently located GP practice has proved to be possibly the least sympathetic and helpful in the town! They have lost clinic letters, made errors on repeat prescription and "accidentally" sent referral letters to the wrong places.... I knew it wasn't going to be easy but establishing adequate local healthcare has been as arduous as wading through waist-high treacle in a snowsuit. I think.

I've always tried to write about topical subjects, or at least topics in which I am interested in or can relate to, and this is partially the reason for a lack of posts in recent months. Having neither the time to "think" outside the family box has prohibited any ponderings beyond the essential and urgent! I've also felt rather lost and uneasy because although we have struggled with the twins' medical issues since birth, the reflux everyone has in the family and H's issues I did at least think I understood them. Maybe not where we were going but at least where we came from and where we are now! However, we now have a diagnosis, which makes an earth shattering amount of sense and would seem to be the missing and most elusive piece of the complex jigsaw which is our family. I should be jumping for joy you may think, and indeed I would like to shout from the rooftops that I am NOT a neurotic mother and there is a very real disease affecting our family with which we have to cope day in, day out. However there is no cure, it isn't going to go away and there is no no hope of a magic wand.

The twins have been diagnosed with EGID - Eosinophilic Gastro-Intestinal Disease. It is an autoimmune allergic response which leaves the gut damaged by white blood cells called eosinophils which attack it. The only ways of treating it are by strict dietary restrictions (so now we are off dairy soya AND wheat again...) and anti allergy meds, and maybe steroids. (No we are NOT going there...) We have such a strong family history of allergies, gastrointestinal problems and autoimmune disease it shouldn't be a surprise. I have suffered mildly all my life with gastro problems and more so with allergies, reflux as an adult and have autoimmune thyroid disease so I should be well informed, strong and understanding enough to deal with this. But I take a little white pill to artificially do what my self-destroyed thyroid cannot, there is no such "fix" for EGID.  In older children it presents as further gastro issues but also with joint pain and problems, and hypermobility and hypermobile joints too - all four children are now under Podiatry and we are hoping it will help J's back pain too.

We are lucky, it's rare and many with it are totally enterally (tube) fed since they are allergic to all foods and my kids are essentially fit and well. However, the reflux goes from bad to worse, the bloating, the constipation - it doesn't go away. Imagine it being the highlight of the WEEK if your child successfully empties his bowels? Or you sleep right through because no one wakes choking on reflux, or sweats so much they need their sheets changing?

Right now I'm feeling a little adrift... relieved, yet bereaved that virtually all hope of the elusive magic wand has now gone. If I'm honest I'm angry too, I didn't "sign up" for this and neither did the children. I'm in denial at times too, it comes in waves! I'm turning the anger, frustration, sadness and denial into some positive energy and am now helping found a Parent Network for families with gastrointestinal disease with GOSH. Extremely worthwhile and a good distraction too.

FABED - Families affected by Eosinophilic Disorders a fantastic site with a discussion forum. useful inof if anyone is interested in finding out more!
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