Introduction
Sept 29, 2011 19:13:33 GMT
Post by FMmom on Sept 29, 2011 19:13:33 GMT
Hi, my name is Trish and I have a 10-yr-old daughter, Kaelin, who has FM. I've known for a couple of years that she completely changed personalities when she ate, but I didn't know until recently that there was an actual condition that could explain everything.
Kaelin has always been incredibly thin -- off the growth charts thin -- yet she has always had the biggest appetite. She needed to eat about every 90 minutes or she'd completely fall apart. Her pediatrician assumed she was so thin because she was so energetic -- Kaelin was always spinning in circles, throwing herself into walls, bouncing, twirling, and generally just moving.
She was diagnosed with ADHD when she was seven, but even the doctor who did the testing felt like it wasn't really ADHD even though she met the criteria.
Her pediatrician began to get a little more concerned about her size -- she was seven years old and weighed 34 pounds. We had a battery of tests for thyroid, food allergies, diabetes, growth hormone deficiency, etc but everything came out normal. Then we saw a nutritionist who calculated that Kaelin was eating, on average, about 3300 calories a day and yet she lost weight between visits. She sent us on to a gastroenterologist.
He found that Kaelin has Pancreatic Insufficiency (fat malabsorption) which explained the diarrhea, the constant hunger, the inability to gain weight and a lot of the behavior problems. Or so we thought. Once she began taking enzymes, she no longer needed to eat as often and her moods stabilized -- initially. But I quickly realized that certain foods brought back all the behavior problems. And the diarrhea.
I took away anything with food color, then everything with High Fructose Corn Syrup (which, I think, 90% of processed foods must contain by law...) Really, once you try to stop HFCS, you pretty much need to cook everything from scratch. Even that didn't completely solve the mystery. Kaelin still didn't put on any weight, the doctor ran test after test and found nothing and eventually tried a feeding tube for overnight feedings. That was a complete disaster; her behavior was worse than ever and she stopped eating any food during the day.
I read about FM last summer and as soon as I read the symptoms, I knew that was the cause of everything. And, oddly, at her next gastro appointment, as soon as I mentioned Kaelin totally flipped out after eating zucchini, her doctor asked a ton of questions and decided to have her tested for FM.
The Hydrogen Breath Test made her sick for days. The one reason why her doctor never considered FM is because Kaelin never complained about stomach pain, but when I asked her about her stomach while she was taking the test, she said "I always feel like this when I eat." Poor kid didn't know that food shouldn't cause pain. It's all she's ever known.
Kaelin has a particularly severe cause of FM and we've yet to find a diet that stops that stomach pain. But I can at least keep her away from the foods that made her go wild and scream every word. Since starting the diet, she's doing better in school, she's making new friends, and she has zipped all the way up the weight chart to -- on it! She's in the one-th percentile! We have a long way to go, but it's nice to finally see a little bit of progress.
Kaelin has always been incredibly thin -- off the growth charts thin -- yet she has always had the biggest appetite. She needed to eat about every 90 minutes or she'd completely fall apart. Her pediatrician assumed she was so thin because she was so energetic -- Kaelin was always spinning in circles, throwing herself into walls, bouncing, twirling, and generally just moving.
She was diagnosed with ADHD when she was seven, but even the doctor who did the testing felt like it wasn't really ADHD even though she met the criteria.
Her pediatrician began to get a little more concerned about her size -- she was seven years old and weighed 34 pounds. We had a battery of tests for thyroid, food allergies, diabetes, growth hormone deficiency, etc but everything came out normal. Then we saw a nutritionist who calculated that Kaelin was eating, on average, about 3300 calories a day and yet she lost weight between visits. She sent us on to a gastroenterologist.
He found that Kaelin has Pancreatic Insufficiency (fat malabsorption) which explained the diarrhea, the constant hunger, the inability to gain weight and a lot of the behavior problems. Or so we thought. Once she began taking enzymes, she no longer needed to eat as often and her moods stabilized -- initially. But I quickly realized that certain foods brought back all the behavior problems. And the diarrhea.
I took away anything with food color, then everything with High Fructose Corn Syrup (which, I think, 90% of processed foods must contain by law...) Really, once you try to stop HFCS, you pretty much need to cook everything from scratch. Even that didn't completely solve the mystery. Kaelin still didn't put on any weight, the doctor ran test after test and found nothing and eventually tried a feeding tube for overnight feedings. That was a complete disaster; her behavior was worse than ever and she stopped eating any food during the day.
I read about FM last summer and as soon as I read the symptoms, I knew that was the cause of everything. And, oddly, at her next gastro appointment, as soon as I mentioned Kaelin totally flipped out after eating zucchini, her doctor asked a ton of questions and decided to have her tested for FM.
The Hydrogen Breath Test made her sick for days. The one reason why her doctor never considered FM is because Kaelin never complained about stomach pain, but when I asked her about her stomach while she was taking the test, she said "I always feel like this when I eat." Poor kid didn't know that food shouldn't cause pain. It's all she's ever known.
Kaelin has a particularly severe cause of FM and we've yet to find a diet that stops that stomach pain. But I can at least keep her away from the foods that made her go wild and scream every word. Since starting the diet, she's doing better in school, she's making new friends, and she has zipped all the way up the weight chart to -- on it! She's in the one-th percentile! We have a long way to go, but it's nice to finally see a little bit of progress.
