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Saturday, 4 October 2014

A diet of dust and air...

When we first found out about Imogen's Down syndrome we read widely. We read every brochure, pamphlet, book and website we could lay our hands on. We needed to understand what was happening and what our future was to be. Why oh why didn't we do the same when she received the blow of a second diagnosis? I think the overwhelming grief that presented itself for a second time simply floored me. Grave's disease runs in my family and honestly, it's just horrible. I'm happy to say we've kicked DS to the curb, we own it, but Graves is this nasty little unwanted house guest that just won't leave.

 Initially we thought we were onto a winner with a pediatrician who used to be an endocrinologist. After 2 and a half years under his care we just felt like we could be doing more. Last year we decided to switch to a endocrinologist with the down side of hours of travel to see her every few months. We were told the medication we had been using was out dated and were given new scripts. I remember sitting in my office at work joining in the consult via phone and just having the world spinning around me again.

A year later, and we are still experiencing thyroid storms, sometimes Category 1, most times a 4 or 5. Having seen my big girl struggle so much this term has broken my heart over and over. Recently someone called my life 'charmed'. I wish they knew the truth. My Bear and I have reached breaking point and we are desperately looking for something, anything that will help.

If we had read as widely on GD as we did on DS, we would have known much sooner of the links between food and thyroid function. The guilt for having not investigated it sooner weighs heavily. Our two younger girls are already dairy free and as we always tackle things as a family unit, we are now gluten free, dairy free, iodine free and potentially egg free. I love my cooking, but this has become a soul crushing stress, tears upon tears have flowed. I feel that all we have left to eat is dust and air. Dust anyone??

We have experienced dietary issues when the girls were younger and found the Failsafe Diet by Sue Dengate to be a lifesaver. Both our big girl and middle girl reacted badly to salicylates and for Imogen in particular this presented in behaviour. Within 48 hours of a new diet we went from 2 year old terror to an angel. I should have really learnt from this experience. Even though I have shared that learning moment to so many other parents and spoken to others about the influence diet has on behaviour, I wasn't hearing my own words as I watched Imogen slowly falling apart.

We have our Thermomix demonstration booked for later this month and we'll see if that is our ticket. In the meantime I'm delighted to say that 3 weeks of a new diet means I have my big girl back. Our holidays have been filled with the giggles of three girls playing happily together. Social skills are difficult for our big girl when her brain is fogged up in a thyroid storm. I can again have conversations with Imogen and you can't know the joy in hearing her voice again as when she is sick or fatigued, she can loose all her language.

I have a steep learning curve ahead of me in retraining all the cooking intuition that I've gathered in my life. My gluten free food hasn't always been well received in the past but eh, you get that. I'm loving the new challenge set before our family and know that in time, it will simply be another blessing.

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