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MomBTired

Years And Years Of Doctor Crazy

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My son is 19 and has been through an incredible ordeal with many doctors. It is hard to shorten the horrible 14 years he has been through this but here I go. It started with asthma and allergies. He was picking up every single illness the kids in school got, all year long. Pneumonia 7 times, chicken pox 3 times and yes, he had the shots. After 6 times of pneumonia, it was found out that his stomach valve was not functioning correctly and what was going in his mouth, was partially going in his lungs. He had a fundo done. Next up was his colon. He was getting impacted so much that he had around 2 hospital stays a month for a gastric tube clean out. We were sent to Ohio for a colonic manometry which showed significant nerve damage in his colon. His large intestine was removed back in 7th grade. He went through numbness in his lower legs and some in his hands for a while. You cannot touch the kid, it hurts. Doctors were telling me that there was nothing wrong with him, that his pain was psychological. They sent him to a specialized children's hospital here for all day PT to get him up and going. While there, they figured out that his knee caps were dislocating when he walked which led to more surgery. Another symptom was that he was blacking out. I was once again told it was psychological but it happened at this place and took his blood pressure. It was incredibly low. He gets orthostatic. So next he was sent to a rheumatologist who figured out that he had vitamin deficiencies and Hashimoto's disease and labeled him with fibromyalgia.

 

He started breaking out with blisters all over his body. Pediatrics set us up with emergency appointments with allergy and dermatology. Prednisone helped but he couldn't be on it that high dose for long. It was almost overlooked. The dermatology fellow/resident assisting the doctor requested to do a skin biopsy. The doctor said it didn't need to be done but it was good practice for her. So it OF COURSE came back positive for dermatitis herpetaformis. I guess it is rare in peds because they put him on Dapsone and was running the wrong blood tests while monitoring the drug. He ended up with methemaglobianemia. He was then sent to an adult dermatologist who put him on a medication which attacked his already messed up gastro system. So that' right, I switched doctors and he has a topical powerful steroid cream now if he needs it.

 

Meanwhile,  his muscle spasms and tremors were getting worse and worse. He was tipping over while standing and his gait is very abnormal. Even though his neurologist believed that it was fibro and psychological pain, he still referred him for a nerve biopsy. So he apparently did not understand the results from April of 2014. In January of 2015, after being referred to the doctor who did the biopsy told us that it was POSITIVE. I found out that around 50% of people with celiac disease have small fiber neuropathy. After looking up the kind he has, autonomic small fiber neuropathy, it was like reading a book about his past 14 years, So when my son was 8, if he went to adult doctors, he would have probably been diagnosed years ago :angry:

 

So after all these years of being told that some of these things are psychological when they were not. he has anxiety problems and PTSD, geeeeeeee don't know why. Now that we know everything, we are checking into getting him a service doggie. He's turning 20 and I think if I get him a service dog, I could actually work more. He is terrified of doctors, not sure why, but I think the dog could replace me at some of the doctor appointments :D

 

So why I share, if you are Celiac, you might want to look up small fiber neuropathy. If you are Celiac, and were labeled with fibro, you might want to see a neuromuscular specialist

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