Having a medically complex child – a term I didn’t even know existed until a few years ago – is hard. It means your entire life is focused on keeping your child safe. When Nicole was born she came into the world a bit early but nothing else out of the ordinary. She was born while I was working for the church, so she came in the middle of the picnic, kids going back to school and the leadership summit.
We joked with the doctor that we had to get past all that before she could be born and she did! She was a good baby, easy to take care of – hardly ever cried and fit right in! Being the first girl she was dressed in pink – she had outfits she only wore once because she had so many clothes!
She stayed home with dad the first year, hanging out while he worked. At about 12 months we put her in daycare with a church friend. She fit into her home really well and did great! Then the diarrhea started. It was a constant to the point our friend started keeping track. What did she eat, drink, etc. It didn’t matter it was constant, down the leg ruin more outfits than should be allowed. So we took her to the doctor, they asked for stool sample – suggested she had too much juice. Note that she’s the youngest of 5 so we weren’t knew parents, we understood the too much juice problem! (That was NOT it)
So we took her to a friend – who suggested some alternative testing and our whole world changed. She was allergic to everything! So off we went to see a new primary care doctor. She sent us to a GI and allergist. The allergist said she’s allergic to milk, soy, tomatoes, chocolate. What ever we fed her she was allergic to! The GI tested her and found so many things it could be. But none, fit – and through it all my once healthy happy baby cried, screamed, and lost weight. At 2 she barely weighted 15lbs! She was tiny!! (Her older brother was born at 10lbs)
So we continued to search for answers, we put her on an elemental formula and things seemed to settle in. She gained weight was happy – unless we let her eat ANYTHING! 1 cheerio could make her sick for days. When she was 4 we went to another GI and was told she had FPIES – food-protein-induced-enterocolitis-syndrome. OK this made sense and our diet didn’t change much. But then there was joint pain and other weird symptoms and the random vomiting.
So 7 years ago – we went to the mayo clinic and saw what Tony still refers to as the Disney Land of doctors. We spent 2 weeks there, seeing every doctor, specialty, and so many tests! At the end of the 2 weeks the neuroligist who was about 80 and was maybe 4 feet tall! Suggested we had POTS and asked if we could stay another few days for testing. I was done at this point! I said no we are going home. He referred us to a doctor in Chicago and home we went.
It would be several months before we got a firm diagnosis that explained our symptoms. I can’t say that Mayo was a success but it did get us to the end! Hard to believe this child turns 16 at the end of this summer and is successfully managing her health on her own! 7 years hard to believe