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Pre-pubescent girl with anaphylaxis (no known allergies)

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my son has idiopathic angioedema which started during  at 13/14yr. wakes up with swollen, face, lips, eyes lids , tight throat.  Recently at 19 had slightly swollen tongue.

He has it controlled with 3 antihistamines when really bad, and should be on 2 types a day at least. It peaks during stressful times and illness.

I know this isn't what your daughter has, but this stuff does seem to happen to allergic teens. my non food allergic daughter started with her milk allergy at 13, and thankfully its burning out at 17 now (long story). 

It took 6 months to get this condition confirmed and sorted. It's difficult, and scary to deal with and watch. I hope things get better soon for your daughter.   

It could be idiopathic but it would also be a new food allergy. People can develop food allergies at any time.  Symptoms usually start within minutes to up 2 hours of ingestion.  This happens 99.9% of the time.  99% of the time symptoms start within minutes to 30 or 45 minutes of eating the food.  If the symptoms are not treated with epinepherine, then they can continue and be protracted.  So, the reaction in her sleep could be a reaction that started earlier and was more minor at that time.  Did she feel fine until then? 

People can have ana to heat and cold and to exercise.  You might think of those things.

What were her symptoms?  Do you have epi pens now?  If not, call the pediatrician and ask for them today.

I do think it is possible that hormone shifts could influence the development of or outgrowth of food allergies but that might easily be totally unrelated. 

I would keep a food and symptom journal where you write down everything she eats and all symptoms she has and the time of each.

What did she eat before both reactions?

Update: My daughter underwent allergy testing of the 56 most common allergens (ie: peanuts, dust, cat, dog...) and every single one was negative.

Since that test date, she has had another anaphylactic reaction, three in total since January 3.  Each of the reactions is an average of 33 days apart.

Have anyone heard of an allergy to ones own progesterone? Could it be possible that a girl who has not yet started menstruating, but has certainly started puberty, would have increased levels of progesterone that could cause anaphylaxis?

We have an appointment for more extensive allergy testing in June.

I appreciate all your comments.

I'm leaning away from allergy at this point since negative tests are pretty accurate. What about a mast cell disorder?  If you google mast cell disorder hormones, it appears there is a strong correlation between estrogen (and maybe progesterone) and triggering of mast cells.

So sorry you still don't have answers - how scary and frustrating!  :grouphug:

That really seems to me to be more likely than allergy-- and ohhhh, how I wish that it WAS an allergy for your sakes.   :-[


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