Hi, Everyone! Haven't been here in quite awhile ... we've just been plodding along, dealing with my 9 YO daughter's FA to sesame and peanut. School started here a couple of weeks ago, and ever since then, whenever she has visited the gym for PE she has also visited the clinic. At first I wrote it off ... I thought she might be getting sick with something viral or perhaps overexerting herself, even though everything pointed to an allergic reaction (she had puffy, red eyes, and was sneezing and said she felt warm). Each time she was given an ice pack, and within about 10 minutes she felt normal. I had followed up with the clinician, and we had tried to determine if anything new had been done to the gym since last year, but nothing was found.
Today it was so much worse, and the clinician was very close to giving her epi. Her eyes were swollen, she had an allergic sunburn on ears, lots of mucus and sneezing, and small dots all over her trunk. To top it off, she was extremely upset :( She was given benadryl immediately, which definitely helped calm her symptoms, but I went and picked her up anyway as she was too upset to return to class.
Of course I have started to do some research on exercise induced anaphylaxis and am out of my mind! I thought avoiding sesame and peanuts was challenging, but this is so frightening. A couple of things we have observed ... they now go to gym first thing in the morning, within an hour of eating breakfast, rather than at the end of the day like last year, and there is a type of exercise induced ana that is brought on by eating and exercising. Also, she is quickly approaching puberty, and from what I have read hormonal changes can exacerbate this. Finally, it seems that running/jogging is most often associated with this, and that is what she was doing each time, and something she does not really do outside of PE (we go cycling, skating, but not the exertion of running laps).
She has an allergist appt scheduled for next week, and, until then, no more PE. She has spent time in the gym with me with no problem, and I highly doubt it is anything airborne in the gym. Anyone have any insight or experience with this? So scary :(
TIA
Hmmmm-- first, I'm really sorry to hear that you're dealing with this-- second, I'd be sure and confirm that today's reaction was, um-- definitely epi-worthy. They can go downhill SO fast from the point you describe. {shivers}
It truly sounds to me as though you've thought about pretty much everything that comes to mind right away. Wait and see, I guess-- if it recurs without the physical exertion, then it's something in the environment, obviously... wonder if the exercise is exacerbating a reaction that would be near-subclinical otherwise?
That's what I am thinking, CM, and from what I have read, very likely. It's like the cup floweths over theory ... your body has a substance that perhaps, in a normal situation, would not yield a noticeable reaction, but the exercise (increased heart rate, body temp and physical exertion) triggers a full on reaction. We had started giving her elderberry last week in the mornings before school, so now I am starting to wonder if that is not the problem?
My daughter is in 4th grade and has never even been to the nurses office for her allergies in all of her school years ... yesterday was her first dose of benadryl (normally i have to throw the bottle out every year at the end of the year ;)) We have been extremely careful, lucky, etc.
Last year I had to switch her midyear from her small, nurturing private school to a not so small not so nurturing private school (they passed out nutter butters IN her classroom to everyone around her, despite knowing of her allergies, among many grievances). The stress led me to a sickness that I had to personally battle for 6 months last year, from December-June.
Needless to say, I am better and, after many heart to hearts with the school administration, we have managed to minimize food in the classroom somewhat (it was absolutely outrageous last year, with a particularly egregious teacher who gave them candy as rewards ALL THE TIME) and I felt I was settling into what I thought was a better place.
The thing that bothers me about yesterday is that my daughter raised her hand continuously as she was reacting and the coach was looking at her but would not address her, Finally, pretty much the entire class had to raise their hands and she's like, "what?!" and they told her my daughter NEEDS to go to the clinic." That really scares me ... they still don't acknowledge the severity of it.
And I agree with a review of whether this event is/was epi worthy ... I plan to discuss with allergist on Monday. Very scary stuff ... makes avoiding peanuts and sesame seem like child's play ...
I don't really have anything to add to what you've thought of and what CM has said - except to consider whether they've changed cleaning supplies (brands, new formula, etc.) or if there are new plants, mulch, fertilizer, bug spray, paint, etc. or new equipment or fixtures (latex or off-gassing) as other possible avenues to explore.
:grouphug:
Quote from: ctmartin on August 25, 2015, 07:23:45 AM
The thing that bothers me about yesterday is that my daughter raised her hand continuously as she was reacting and the coach was looking at her but would not address her, Finally, pretty much the entire class had to raise their hands and she's like, "what?!" and they told her my daughter NEEDS to go to the clinic." That really scares me ... they still don't acknowledge the severity of it.
:rant: If that happens again, she needs to get up and leave. Just go. Even if afterwards you aren't able to get them to see reason for her "insubordination", detention is better than the alternative...and maybe quit with the elderberries.
:grouphug: no other advice, just hugs.
Great suggestions, rebekahc ... worth looking into. I believe the only thing that was explored was whether the floor had been resurfaced or not. TOTALLY agree, starlight. I told her that if she feels like she is reacting and the coach does not acknowledge her, that she leave immediately ... this is not a time to worry about respecting her elders. However, that brings up a whole host of other considerations as well ... walking alone to the clinic, which is in another building. Also, currently, she does not have an epi follow her to the gym, so that will probably have to be reexamined. Again, we have never had ANY problems at school, Thank God, so this is all new territory for us, even 8 years into it!
Could a fellow student or the coach be wearing something your DD is reacting to? Perfume, lotion, sunscreen? Add heat, sweating and moving bodies and that can increase exposure.
Just a thought. When my DD was young she would react to her friends sunscreen if they touched each other. It was a coconut ingredient. When her friend wore DD's sunscreen, no issues.
Just another thought.
Sorry your DD is going through this. How scary for her.
Quote from: ctmartin on August 25, 2015, 08:38:48 AM
However, that brings up a whole host of other considerations as well ... walking alone to the clinic, which is in another building. Also, currently, she does not have an epi follow her to the gym, so that will probably have to be reexamined. Again, we have never had ANY problems at school, Thank God, so this is all new territory for us, even 8 years into it!
I'd suggest going in to see the principal, or the most-supportive high level person you've dealt with, and tell them straightforward, "this is what happened, it is NOT going to happen again. next time, DD is going to leave and she'll be bringing a classmate with her due to this being a MEDICAL EMERGENCY. NEITHER OF THEM are to get in trouble for this."
I'm having flashbacks now to my freshman year gym class. My best friend had exercise induced asthma. I can't count how many times I walked with her to the nurse while she wheezed, then ran back to her locker for her stuff. :-[
Does she have a friend she can say walk me to the nurse?
I worry if it is something more serious that she needs not be walking the halls alone. And that possibly the obtuse coach might notice ~)
I'm sorry to read about your daughter's experiences with physical education and I'm glad she has an appointment to investigate these incidents more carefully.
I never heard about exercise-induced anaphylaxis before, and I definitely didn't imagine food-dependent, exercise-induced anaphylaxis existing. Until I went to college, made the mistake of eating dairy before going to my weightlifting class. I ended up turning bright red, coughing, and ended up going to the hospital because my benadryl/inhaler combination failed to stop the reaction. They thought maybe it was just a straight food allergy, but then it happened again when I ate dairy and exercised. That's when they gave me a guideline of no dairy four hours before and four hours after exertion, though they never really clarified what constitutes "exertion"...
thanks everyone for your responses! i spoke to the coach today, and while this school is notorious for being pretty darn clueless re: FA (and the coach is no exception), she understood the need to have my daughter sit out until further investigation. that is so interesting notashrimpwimp! now i know that it is not just internet anecdotes (since i trust everyone here implicitly ;)) but it has happened to someone i "know." crazy stuff ... scary, too.
once you knew, did you continue to have problems or have difficulty with the timing (i.e. having reactions even after waiting a longer period of time) and/or threshold, given that "exertion" was not clearly defined?
i am leaning toward the change in PE time (morning vs. afternoon) and the elderberry, although the change in time could elicit that kind of reaction with some other food trigger. my daughter has tested negative (skin/blood) to most tree nuts and borderline to a couple, but we have been eating "may contain" tree nuts since her diagnosis over 8 years ago without any problem (although she has never consumed or been challenged). most of our breakfast cereals are may contain TN, so it could be a case where her system is just worked up enough to be pushed over the edge by the exercise. i am sure hoping it is the elderberry, though!
http://www.buzzle.com/articles/elderberry-side-effects.html (http://www.buzzle.com/articles/elderberry-side-effects.html)
Eep. I think I'll be skip trying elderberry for the foreseeable future. Any chance she's allergic to honeysuckle plants?
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!
Any update?
I was just wondering the same thing.
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.
:grouphug:
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. :heart:
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 :poop:
(I've always wanted to use that emoticon ;))
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. :grouphug:
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 (http://www.dailymail.co.uk/news/article-3252559/Teen-girl-rare-allergy-causes-break-hives-eats-hummus-working-out.html)
Well, sounds strikingly similar - esp. the reaction seems to escalate when she stops exercising.
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. :'(
:grouphug:
I wish that I had more than a big hug for you, ct.
Oh my goodness, how frightening for both of you. I wish I had some sage advice. All I have is :grouphug: .
Is there any way you can get her appointment moved up?
:grouphug:
Worried for both of you.
Does she wear a medical alert bracelet?
:grouphug:
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.