January 28, 2012 at 5:40 pm #99RumiParticipant
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.January 29, 2012 at 4:53 pm #1710PalominoMorganParticipant
Ok… first things first. EDS skin doesn’t cause hands to blow up 3 times their size. Mast cells can do that though. Here is a great link all about mast cells (though it is pretty technical.) http://www.copewithcytokines.org/cope.cgi?key=mast+cells Here is another one; http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm (didn’t read this one, but got good reviews. 🙂 And THE place for masto info http://www.tmsforacure.org/welcome.php You can also go to YouTube and put in The Mastocytosis Society and it will bring up all their videos.
Now, as for the bug reactions… all my mast cell issues were triggered and kicked off by being stung by a wasp on the inside of the cheek in 7th grade. After that I had increasing sensitivity to things. It only gets worse as time goes on. My trigger list now is ever growing and I am always flushed.
I’m no MD, but as the mother of a 4 year old my cabinet has a bottle of liquid Zyrtec in it. The adult mast cell treatment protocol is to fill up as many of the histamine receptor sites as possible so the mast cells can’t use them. If you read the first link, you’ll see there is still plenty for them to work with, but at least we can do something to help ourselves. Most of us do well on the Z/Z treatment (Zantac/Zyrtec). Benadryl is an anti-histamine and I use if for break thru issues, like when I walk in to some place I can’t escape (like a family function) and someone has bathed in perfume or has air fresheners in the house.
The mast cells can create all kinds of gastrointestinal issues as well. They LOVE to hang out in the GI tract. So, not surprising your daughter is having issues there as well. Now, Dr. D will weigh in with more soon I’m sure but MY understanding and what has happened in MY case is that the mast cells have CAUSED the intercranial hypertension. There was not fluid collecting in the subarachnoid space in my brain in 2009 (as seen on MRI) but there is by May 2011. It has displaced my entire brain lower in my head and wreaked havoc. If you read the article called “Organic Brain Disease” in the Articles and Handouts section that pretty much describes what has happened to my brain.
I grew up in rural PA myself, so I can identify with the local doc reaction. ER docs are also mostly trying to “treat em and street em”. If you are so inclined you could discuss trying a course of daily doses of Zantac and an appropriate proton pump inhibitor for your daughter to see if it reduces her symptoms. Zyrtec made a huge improvement in my cognitive function within 24 hours. One day at work I couldn’t get thru my workload. The next day I was done before lunch! I couldn’t figure it out and the only thing that changed was I switched from Claritin to Zyrtec. So… Zyrtec could be an easy “trial” to see if she responds to a mast cell treatment.
Disclaimer Alert – This isn’t medical advice. Just telling you what I did and noted.January 29, 2012 at 6:01 pm #1712RumiParticipant
Thanks! I’ll read the info tonight. She’s had so many issues since birth that I have to attack the biggest issue first and work down the list. Right now, it’s the symptoms that look like ICP. I’ve pretty much ignored the mosquito thing since it seems so minor compared to the other stuff (she had surgery to repair her mitral valve last year, so my focus had been there). But, the mast cell video made me take a second look.January 29, 2012 at 9:52 pm #1714MeghaParticipant
It’s interesting to see this post. My 10yo daughter has always had pretty bad reactions to mosquito bites, not as bad as your daughters. But in India, (where we visit every couple of years to see family) she has terrible reactions. The bite grow almost to golf ball size and gets fevers. I didn’t know about my EDS, or hers, until a couple of years ago so I never put the two things together. Also, she is having either sinus infections or bouts of diarrhea every week or two since September and occasionally has bouts of vomiting for no reason. I never put all of these things together until recently, wondering if it’s all due to the EDS or just something that’s weakened her immune system. I see I have a lot of research to do.
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