Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Confused..I don't know what to do http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1294684688 Message started by debbu on 01/10/11 at 06:38:08

Title: Confused..I don't know what to do
Post by debbu on 01/10/11 at 06:38:08

I joined this forum tying to get as much info as possible on mast cell disease. My son has never been diagnosed with mast cell, but he has had 2 anaphalctic episodes One in 2003 and 2007 it was at that time that we started monitoring hgis tryptase levels. Since Jan. of 2007 they have been between 15-16. In June of 2010 it was 18.9 and December of 2010 20.3..He has no symptoms of any kind and never has. He does seem to have the high tryptase and it appears to be on the way up again...so now I it is a waiting game again to see when he has the next attack. I spoke with Dr. Akin sometime ago regarding Nick and he asked me about several syptoms Nick could be having and I told him he has none of those. Dr. Akin gave me his info and email and told me I could get ahold of him if something changes, but has since changed hospitals. Does anyone have Dr. Akin's email at Brigham Young. I would be so thankful.

Title: Re: Confused..I don't know what to do
Post by Joan on 01/14/11 at 19:21:28

Dr. Akin is at Brigham and Womens Hospital in Boston. If you PM Debbie (forum moderator), she'll send you his email.

If your son has had anaphylactic reactions, there were one or more things that triggered them. Those could be environmental (heat, allergens, cold, etc.) or emotional (stress) or something in his diet. Until you figure out what his trigger(s) are, you might want to google the low histamine diet. If he hasn't been allergy tested, that might be worth checking into, but he must not go off antihistamines if he's taking them routinely. If he's not on routine antihistamines, you might check with his doctor to see if he can be on some until you have more answers. In any case, do keep epipens wherever he is, just to be safe!