- CASE FILE
Mysterious sudden Onset of juvenile small fiber neuropathy in a healthy 13 year old female
ABOUT THIS CASE FILE
1 year ago my healthy daughter went to camp. When she came home 1 week later she was 20lbs heavier. Her legs were very swollen with +2 putting edema and chest pain. I took her to the local ER and she was sent home with no answers.
We took her to her pediatrician and did a battery of labs which all came back normal. He did a lot of autoimmune labs which were normal. She started having a purple discoloration of her lower extremities with pain. Her feet and hands would cramp and she would be unable to move. She had racing heart rate which at times were irregular. She was sent to rheumatology but could not help her.
We were sent to a doctor who did a skin biopsy and was told that she had a very severe case of Juvenile Onset Small Fiber Neuropathy. She has since been diagnosed with dysautonomia and erythromelalgia.
ALL of her autoimmune testing that he has done has been negative too.
She has had high dose Solumedrol infusions which made her sicker. She is now on IVIG 40 grams/day for 4 days each month. She has gone from a 110lb healthy soccer playing child to a 240lb child who cannot even walk in the grocery store.