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Could my daughter have this too? (Read 4050 times)
nelson1600
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Melissa, TX
Could my daughter have this too?
09/04/14 at 11:51:44
 
My 9 year old was standing with me in a store last night.  Her face started flushing, but she did not seem to notice like my other daughter and I did.  I then realized she had a red welp across her neck where the seat belt in my car had rested on her.

I stopped in the middle of the isle and asked her to give me her arm.  I wrote on it with my finger tip and watched the white chalky residue start to turn red and hive up.  I asked her if she ever has trouble breathing.  She said, not really but my throat feels funny alot.

I am in tears.  By the time we got home her skin was not reacting as bad.  Barely turned red and did not hive.  But I am scared out of my skin.  Did not hear back from Dr. Miner today, per vm it sounded like both nurses were off.

What am I going to do if she has this?  No one can figure me out, she is only 9....

You would think I would know what to do, but I cannot imagine putting her thru what I have been thru.  Any advice?  Just start with tryptase?  In Texas where do you go for pediatric help with this?
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Doctor's are glorified auto mechanics of the human body; make sure you find one that you trust...
 
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Bruce Hart
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Oklahoma, USA
Re: Could my daughter have this too?
Reply #1 - 09/04/14 at 13:46:22
 
Hi Nelson. I've read two publications by Molderings on MCAD running in families. I think myself, my mom, and at least a few other family members may have MCAD, but mine is easily the severest. I think it's manifestation will probably vary a lot per family member.

Dr. Henry Legere is adult and pediatric allergist/immunologist in Austin TX who has been reported by patients to be knowledgeable on MCAD.


Dr. Henry Legere
http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1368902368

Familial Occurrence of Systemic Mast Cell Activation Disease
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787002/

Evidence for contribution of epigenetic mechanisms in the pathogenesis of systemic mast cell activation disease
http://link.springer.com/article/10.1007/s00251-014-0768-3
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Joan
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Colorado
Re: Could my daughter have this too?
Reply #2 - 09/05/14 at 17:03:31
 
It could be a MC problem, but it could also be a true IgE allergy problem.  Think about whether she ate any high histamine foods prior to the flushing and whether she has any environmental allergies.  Pollen counts are off the chart in much of the country right now.

She should have liquid, dye-free Benadryl with her at all times, if she can take it, until you figure this out, and I'd ask the allergist or her pediatrician about Epi since her throat feels funny. (Of course, none of this is funny!)

If this is happening a lot, you could start her on an antihistamine regimen before seeing an allergist, consulting her pediatrician, of course, just to be safer.

Dr. Castells has seen pediatric patients, so that's an option, too.  National Jewish Medical Center in Denver has specialists who are familiar with mast cell and allergy problems and it's a top center for respiratory and immunological problems.  They do comprehensive testing and are very good.

A competent allergist should test a lot of things, and you can request a tryptase test as long as they're drawing blood.
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Joan
 
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