Amy Rattner

Topics discussed

Common childhood symptoms
Misdiagnoses
Finding a doctor who understands Celiac Disease

Video Text

She celebrated her 2 nd birthday. She had a huge cake with a little ballerina kitty on it and we thought that we were a perfectly normal family with two perfectly normal children.

And within a matter of – I would say – 5 days of her birthday party, she was so sick that she was having trouble walking. She couldn’t lift her head when we would sit her at the table after waking her up from her nap.

When she first got sick, we thought it was a flu. But her decline was so quick that we knew within a matter of weeks that it could not be the flu.

We had been working with the pediatrician, trying to work out what was wrong and we got to the point where it was just unexplainable. And so he said to me that he knew of a gentleman who was running a diagnostic clinic where they sent children that nobody knew what was wrong with them and I remember thinking to myself, “Oh my God we’re going to a place where the sickest kids go because nobody knows what’s wrong and I had a normal daughter two weeks ago and now I’m going to the Difficult-To-Diagnose clinic. It was a very scary moment.

She went – she was admitted to the hospital as part of being “studied,” I guess you would say – in this clinic so they could figure out what’s wrong. And there was – the man who was in charge of the clinic had been trained in Canada. And he treated children with all kinds of things – of all levels of seriousness. And he said that he was watching Amanda one day – I had taken her to the playroom – and all of these children with IV bags and who had had surgery and who, through chemotherapy had lost their hair – they’re all in this playroom. And they’re all playing. And Amanda’s just lying there. And for some reason it clicked in his head that he remembered from the days where he was training in Canada, that he had seen a child who was completely lethargic like this, and that child had Celiac Disease.

For me, if we hadn’t found out that Amanda had Celiac Disease I don’t really know where our life would have led. The nature of her presentation was so dramatic that I’m not so sure that she would have survived. So for us, the diagnosis was a way to be able to look ahead and imagine a future for her. My daughter was diagnosed when she was 2. She’s 15. She is a perfectly normal healthy, happy child.

I’m Amy Rattner, my daughter Amanda’s 15. She has Celiac Disease and we are living our life.