I'm so sorry, how scary. They need to be told at school that if this happens again, they call nurse to come to her, not make her walk to health office, especially alone! Coach especially needs to be talked to about ignoring her.

 

 

Worried for both of you.

Does she wear a medical alert bracelet?

Oh my goodness, how frightening for both of you. I wish I had some sage advice. All I have is  .

Is there any way you can get her appointment moved up?

 

I wish that I had more than a big hug for you, ct. 

Hi, everyone ... just updating, venting, crying ... I am so frightened and frustrated.  Since I last posted, my daughter has had two further reactions ... one somewhat significant, but not as bad as the first, and one mild.  The somewhat significant reaction happened within 15 minutes at the roller rink.  We had eaten lunch on the way over in the car, and within 15 minutes or so of skating (which we had done just a few weeks previously with no problem) she came to me crying saying, "Mommy, I think I am having a reaction.  My mouth is tingling" and sure enough she had hives and swelling around her eyes.  This time she had little to no mucus (she did clear her throat a few times, but I think this could have been due to nerves ... she was VERY frightened ... but no copious sneezing, which is what she had told me is usually her first indication that it is going to happen) only hives and swelling, and bright red ears.  So, more research on my part,and counting the days until our doctor's appt in January.  I actually took her out of cheer leading, as it was too stressful for me to watch her and wonder what kind of intensity might set her off. 

Today she came home from school and wanted to play outside for awhile.  She came in and had three small hives under her eye.  I asked her what she had done and she said she had jumped off a small wall 4 or 5 times and then jogged across the street.  Not that this was a scary reaction, but something that totally disproved my theory about this being food related, as she had not had anything to eat since lunch at 11:30am and it was 4:15pm.  When I asked her why she jumped when she knew she wasn't supposed to, she looked at me and said, "Mom, I just wanted to ... I haven't jumped in awhile."  That broke my heart ... she can't even be a kid, and the anxiety is really getting to her.

Sorry this is so long ... I am so upset right now.  She did not even exert herself too much and had hives, so now I am so worried that *any* amount of physical movement is going to set this off. 

Well, sounds strikingly similar - esp. the reaction seems to escalate when she stops exercising.

Just saw this in the news today, and I am wondering if this is what my daughter is experiencing!

http://www.dailymail.co.uk/news/article-3252559/Teen-girl-rare-allergy-causes-break-hives-eats-hummus-working-out.html

I'm so sorry you have so much stress and anxiety right now!  I'm not an anxious person, but I remember when DD had mystery anaphylaxis how anxious I was for a long time.   

Thanks, CM.  I'm just so frustrated because it seems so rare and no one, not even the allergists, understand it.  In addition, the fact that it came on so suddenly ... she is almost 10 and seems to be starting puberty, so I am wondering if hormones have anything to do with the onset?  I made the mistake of looking online, and of course what little anecdotal info I could find was extremely frightening.  Most of the people stated that they way they have learned to "deal with it" is by noticing their warning signs (e.g. itchy palms, metallic taste in mouth), but my daughter has told me that there ARE NO WARNING SIGNS.  Immediately following the cessation of exercise, the symptoms start.  Ugh 

(I've always wanted to use that emoticon )

 


I am so sorry that this has been-- and continues to be-- so very stressful and bewildering, ctmartin.  So many of us have been there at some point-- I wish that we had some way to make your worries just a bit less.   

Hi, everyone!  Yes, thanks for following up.  As suspected, went to the allergist today and guess what?  We *stumped* him!  The only thing he can offer at this point is an exercise challenge and frankly, right now, I am just not up for it.  I am spent.   For years, we have been VERY diligent and careful, which has provided us with a wide comfort zone.  Now, my head is spinning and I just don't know what to think.

For now, she will not do anything in PE until further notice.  We will always have a set of epi pens in the gym from this day forward.  And, of course, I plan to be extra vigilant (read:  completely on edge) with any physical exertion, although we actually went roller skating this weekend with no problems.

I just don't get it, and neither, of course, does the allergist.  He said that he knows of exercise induced ana, but has never had a child suffer from this condition.  He pretty much discounted the elderberry theory, and seems to think it is more generalized (i.e.  simply exercising within a certain amount of  time after eating).  It's hard to accept, though, as nothing like this has ever happened before and I am pretty sure at *some* point in her life she has eaten and been physically active.

I am VERY scared of a challenge, even though I know it is the only thing he can offer us at this point.  As I mentioned to you all before, I have been prone to mild anxiety in the past, but my allergy-related anxiety was so bad last year that I was sick for 6 months and lost 15 pounds.  I was a mess.  I have only been well for 3 months and I am just not ready for this.  Plus, my daughter's anxiety is at panic level, and her concentration/grades are already suffering and we are only 3 weeks into the school year.  I am usually very proactive ... not one to put my head in the sand and claim ignorance is bliss, but I just don't know what to do at this point.  She was at gym today (I accompanied her) and she ran a couple laps, but I urged her to not overdo it.  She was very scared, and, truth be told, so was I.  When I told the allergist, he said, "Well, it doesn't necessarily happen every time,"  which also makes a challenge pointless on some level because just because it doesn't happen in this particular recreated circumstance, does not mean it will never happen again.

BTW ... he told me that it was def. a borderline epi moment, which I guess I knew in my heart of hearts, but didn't want to hear.  Now I do not trust the "clinician," who did not even check her breathing while she was reacting.  So confused right now.  Thanks for listening.

I was just wondering the same thing. 

Any update?

i don't think we have had much experience with honeysuckle, other than enjoying their fine aroma.  interesting article, though, and really makes me rethink elderberry for everyone in the fam!  i usually like to give them some kind of immune booster at the outset of the school year, with all of the new germs they encounter, but this is not the one for us anymore!