Tuesday, May 10, 2011

It's the small things

Poppy was born tiny and drew gasps of gorgeousness with her small, compact, perfect form. She was snug, sweet, and sassy. Clothes draped her little figure with concern, always a year at least in size below her actual age.... as I was shocked the other day to realise, Ruby at 6 months was comfortably wearing an outfit Poppy wore for a photo on the wall when she was 13 months old. But cutesy became concern when we realised small and sweet was one thing, but too tiny to get on a toilet aged 3, too small to get a bike for her birthday, too small to get up on the bed aged nearly four was actually a very big thing instead. Other things made us worry too - her popensity to go to the loo a lot, and constant complaints of a sore tummy.
We took her to an Endocrinologist who confirmed our fears - she barely makes it onto the centile chart, and is way below the range she should fit into as our daughter. Big needles went into her wee arms and blood was taken for nurmerous tests. An X ray was taken of her left wrist which told us that despite the fact she will be 4 next week, she has the bone age of a two and a half year old. Apparently this is good. She may be four and look two and a half, but she has the potential to grow. The not so good news is that something is delaying or stopping her development. She is 'failing to thrive'.
That 'something' appears to be Gluten. Ghastly gluton apparently is poisoning her - although she has to have a biopsy to confirm but it ticks all the boxes. So, for starters that's bread, pasta, cereals, chocolate, biscuits, cakes, processed foods, sweets, and pretty much most things except fresh fruit and veg (which thankfully she relishes). Once she's confirmed to have Coeliac disease she begins a life-long avoidance of all mainstream foods. Frankly I'll do whatever it takes to give her the best diet I can, but all I can think about it eating out, going abroad and worst for her - having to avoid buns, cake, crisps and pasta at parties and forever question what she eats. But, if it gets her healthy and well again, we'll do what we have to. Unfortunately we've been told it'll take upto 12 months to get the biopsy done. Twelve months during which we have to continue to poison her, continue to watch her pain, continue to flush away her nutrition down the toilet with her poo as her body can't process it properly with gluten in her system. Twelve months? Are they mad? Needless to say, we'll be taking her abroad if we have to. She's small and sweet, and snug and sassy and smiley and sensational. She has character ten times her height, and no matter what happens now with her size, she'll always, always, always be our perfect package.

6 comments:

  1. Oh, boy, do I relate. We were just at the endo (again) with Ruby last week, and celiac is on the list of things to test for. Best of luck - I really hope they don't make you wait a YEAR to find out.

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  2. Awww. Must be worrying and upsetting seeing her like that. If you needed to change her diet considerably I'm sure she would get used to it in time and then you'd see some amazing results, I'm sure. It just doesn't seem right that she has to wait a year though.

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  3. You poor love. This post made me feel sad and sorry, but also uplifted and inspired. Poppy sounds like the most delightful little lady and she is so very fortunate to have a wonderful Mama and supportive family unit to get her through. It is really frightening the number of things out there that can harm our little ones... too many to think of. I do hope they can give you a diagnosis before a year is up. The anticipation of these results is often worse than the result itself. Big hugs from across the globe xo

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  4. i have a dear old friend whose son is going through similar, among other food allergies, and he's now a thriving second grader. do what you need to to educate yourself on how to feed her and she'll be fine. there are loads of websites for support, info and recipes. good luck. it takes a year to try out and see what happens as you change her diet. hugs, dear.

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  5. My mum was diagnosed with coeliac disease years ago - it took a while for her to adjust but she's used to it now and the range of gluten free foods in the supermarkets is vast. I hope you don't have to wait a year for diagnosis, that seems such a long time.
    Hope you are keeping well xx

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  6. so sad to read your post...hang on in there! At times like this you do what you need to do - if that is going into debt to have tests done, going abroad or putting her on gluten free diet ASAP then that is what you will do. A friend of mine was recently diagnosed at the age of 35 and she is adjusting really well and isn't proving as tricky to eat out as we had thought etc - most supermarkets stock good selection of gluten free items etc - good luck x

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