Mast Cell Activation Disorder

[JuneFlower]

Ok this is a confusing diagnosis. There seem to be many types. I think some of you may be familiar with this. My daughter has some but not all the symptoms. She has itching, flushing, redness, abdominal pain and migraines and headaches. So anyway if anyone has advice about this. Should I request a test? What is the test?

June

[Christy_D]

Yes have her tested. I put it off for a very long time thinking it wasn't an issue and wasted a lot of time that could have been spent looking for the right medication to help my son. It was at the urging of someone on this forum that finally got me to get him tested.

Testing is very tricky and has to be done exactly correct. Dr Afrin in South Carolina is always willing to guide other doctors through the process We opted to see him directly, but when we were there last October he said he wasn't accepting any new patients. That may have changed since then, not sure. There are other specialists in the east, can't remember their names, I think in Boston maybe. If I could go back in time, the one thing I would change would have having him tested for MCAS when I found out about it, instead of waiting over a year.

Just my two cents.

Christy

[Christy_D]

Here is a link to a list of symptoms:

http://www.mastocytosis.ca/signs.htm

You can see many of the symptoms overlap with POTS, and so do some of the medications to treat it. The first medication my son was prescribed for his POTS was doxepin. It is also prescribed for MCAS. It has antihistamine in it. It took away some of his symptoms immediately and those have never returned, (ie...licorice legs-unable to walk- itching when he got to warm).

When my son was in the 10th grade, his dose of doxepin was increased to a very high dose(max) and he did great. He felt really good, but it only lasted 6 weeks and abruptly stopped. Dr Afrin surmised that the high dose caused his mast cells to go on a dumping binge and they became depleted. So while his mast cells were depleted he felt great until they built back up and then he returned to being bedridden. He remains on the doxepin though because without it, he gets so much sicker.

Perhaps try antihistamines on your daughter to see how she does. My son takes 10 mg zyrtec twice a day and 150 mg zantac twice a day. Even if she doesn't improve on antihistamines, don't rule out MCAS.

[JuneFlower]

Thanks so much. When we see the new dr I will ask about the test. I hope your son is well.

June