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Topic Summary

Posted by: lyntowers
« on: November 27, 2020, 10:41:47 AM »

My Daughter was the same, but started at 13. No issues but then started having severe abdominal issues, then progressed to anaphylaxis. Spent 5 years testing for various issues. Found out that she has an anaphylactic allergy to sulphites and even reacting to the sulphites in the EPIPEN. We eliminated those from her diet and she has been fine for the last month. Went through 5 years of hell. Can't figure out why this was not previously presented as an option.
Posted by: akspearz
« on: October 23, 2019, 05:25:00 AM »

Just curious if you can tell me what ended up being the diagnosis with your daughter. My daughter is 12.5 and is currently experiencing
anaphylaxis with no known trigger. Symptoms occur about every 30 days. Allergist has been unable to pinpoint any correlation in diet
between episodes. We've had her allergy tested and no positive results. Diagnosis is idiopathic anaphylaxis. Currently taking a daily antihistamine
and have an Epi on hand. Have had to use Epi once and call the squad. 
Posted by: TBrown
« on: March 12, 2016, 08:09:24 AM »

What about catamenial anaphylaxis?

She is approaching menarche. Could she be allergic to her own progesterone?
Posted by: CMdeux
« on: March 11, 2016, 11:58:35 PM »

That really seems to me to be more likely than allergy-- and ohhhh, how I wish that it WAS an allergy for your sakes.   :-[
Posted by: rebekahc
« on: March 11, 2016, 07:29:08 PM »

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:
Posted by: TBrown
« on: March 11, 2016, 07:02:21 PM »

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.
Posted by: lakeswimr
« on: February 08, 2016, 06:49:50 AM »

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?
Posted by: eragon
« on: February 07, 2016, 11:36:36 AM »

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.   
Posted by: GoingNuts
« on: February 07, 2016, 08:54:09 AM »

How scary for you.  I hope you can get some answers soon.  :grouphug:
Posted by: TBrown
« on: February 07, 2016, 08:06:09 AM »

We are in northern Ontario, Canada and are awaiting an appointment with a specialist.

There have been no correlation between the two episodes and each time nothing new was introduced. The most recent episode actually happened in her sleep. I am so thankful she woke up and realized what was happening.

Posted by: GoingNuts
« on: February 07, 2016, 07:26:16 AM »

^^ What CM said.  I was also going to suggest idiopathic anaphylaxis, which I hope is not the case.

Has she been seen by a board certified allergist?  Can you think of any commonalities between episodes?
Posted by: CMdeux
« on: February 06, 2016, 09:48:16 PM »

No-- and I've looked, actually, because my daughter had cyclic reactions and was FAR more volatile for a while after she was mid-way through puberty.

Hormone levels may make women more likely to anaphylax, or do to so more severely, during some points during a menstrual cycle, but as far as I ever could find literature for it, there's nothing to suggest that they make anaphylaxis itself HAPPEN in the absence of another trigger.

Of course, new allergies during adolescence are a known thing. 

So-called idiopathic anaphylaxis is horrible.  I hope that you can figure out what the underlying trigger has been. 
Posted by: TBrown
« on: February 06, 2016, 06:52:11 PM »

My ten year old daughter has been having anaphylaxis with no known allergies. First reaction was on January 3, second three days ago, on February 3.

Because we have had no signs in the past of sensitivities and because of the irony of the dates of the reactions, I'm wondering if it is possible that her estrogen level may have something to do with her new sensitivity/allergy.

Has anyone ever heard of this possibility?