I’ve read part 1 of the Driscoll theory. Let me tell you, it was pretty odd to read all about myself (especially since doctors have been shrugging their shoulders at me my whole life.)
I’m curious about something though. I was watching the video about Mast Cells and thought about something that happens with my daughter (age 5).
She and I have EDS (we aren’t sure which type yet, waiting on the lab but pretty positive it’s not vascular). She has a really severe reaction to mosquito bites. I’ve had to take her to the walk-in clinic 3 times (twice this past summer) for this.
Twice she was bitten on the hand and her ENTIRE hand swelled up 3 times its normal size. She can’t even bend her fingers, it gets so bad. Once, she was bitten by the eye and her eye swelled almost shut. She gets bitten other places a lot, but usually has just the typical slight swelling we all get with these bites. It’s just by her eye and on her hand that she gets the extreme swelling.
I also react like this, but not as badly as she does. Some bites swell up really big and some don’t.
I was told to give her Benadryl and she was prescribed antibiotics every time. The walk-in doctor or PA (depending on who we see) always thinks it’s a skin infection, but it seems odd that this one kid keeps getting skin infections from bug bites and they don’t think it’s an allergic reaction.
I’m trying to read about mast cells, but can’t really find too much. I was wondering if her severe reaction could be some type of allergy or could be related to mast cells. Or is this just something that goes with EDS skin?
I don’t know if the rest of this info is helpful, but she gets the same neck, shoulder, head pain that I do (along with random vomiting when she doesn’t have a virus), so I am really thinking she has intracranial pressure. She and I both fit what I read in the Driscoll Theory Part 1. I’m going to be speaking with my PCP and her pediatrician about the ICP. I just don’t want my daughter to grow up like I did with so many unexplainable problems.