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.