Has anyone overcome severe pa anxiety?

Posted on: Sat, 04/21/2007 - 3:52pm
California Mom's picture
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Joined: 07/14/2000 - 09:00

Hi guys -

It's been a while, but I'm hoping I can count on my old friends (and maybe some "new" friends [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]) for some advice.

My 12 year old dd is having horrible anxiety re: her peanut and tree nut allergies. She used to be pretty calm about the whole thing, and was probably actually not careful enough.

After not having had a reaction since she was almost five; she has now had two recent reactions. Both happened at school. (and yes: she has a 504 plan, and has had one since kindergarten.) The first one was in December, when the teacher allowed cookies with ground up walnuts to be served as part of a "traditions" celebration. The second was totally dd's fault: she ate her friend's Chinese chicken salad at lunch, which had peanuts in it!!!!

In both cases dd felt very sick, and then violently threw up. We used Benadryl, but not the epi-pen, and dd was fine after. The doctor did tell us though, that throwing up is a sign that the reaction is systemic, and she worries about blood pressure dropping. She said to use the epi-pen next time, even if she throws up and feels better after.

Anyhow, I promise I am trying to get to the point. The point is that now dd is constantly afraid that she is having allergic reactions. I know that this is "normal" and I did read a great link from Alternative to Mainstream in another thread, regarding pa anxiety.

I would like to know, however, how to help her get through this and come out the other side. I am glad she is being more careful, but this anxiety is so extreme that it is a very serious problem.

I did get the name of a therapist, from our allergist, who is supposed to be very good with anxiety and medical issues. Unfortunately she doesn't have any openings in her schedule, but she did talk with me by phone and recommended a colleague. She felt that I need to have dd meet with someone as soon as possible.

We just had a bad episode tonight, so this is weighing heavily on my mind right now. I will call on Monday to see the therapist, but meanwhile: I am hoping for some success stories about people going through this and coming out on the other side.

Thanks so much in advance,

California Mom

Posted on: Sat, 04/21/2007 - 11:04pm
Adele's picture
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Quote:Originally posted by California Mom:
[b]Hi guys -
It's been a while, but I'm hoping I can count on my old friends (and maybe some "new" friends [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]) for some advice.
In both cases dd felt very sick, and then violently threw up. We used Benadryl, but not the epi-pen, and dd was fine after. The doctor did tell us though, that throwing up is a sign that the reaction is systemic, and she worries about blood pressure dropping. She said to use the epi-pen next time, even if she throws up and feels better after.
California Mom[/b]
Hi California Mom. I haven't seen you on the boards for a long time! Welcome.
I wish I had words of advice but I don't have a child with PA. As an adult with PA, there are times that I am paranoid about eating - so I can imagine what your DD is going through.
I appreciate the information you posted on vomiting as there are some here on the boards with only GI reactions.
Adele

Posted on: Sun, 04/22/2007 - 12:43am
California Mom's picture
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Thank you so much for your responses, Adele and (edited).
Adele, I'm glad you thought my comment about using the epipen for vomiting was helpful. I was afraid people would read that and think "well, duh!" [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
(edited), thank you so much for sharing your experience. It does sound very much like what my dd is going through at this time. She has even asked [b]me[/b] if food I have cooked at home has peanuts in it!
Last night she told me she was 100% positive she was having a reaction. Thank goodness she wasn't.
I understand about food allergy anxiety. I had it myself, on dd's behalf. As a mother, dd's food allergies were 100% my responsibility for a very long time. As long time members here might remember: I had such extreme anxiety re: dd's pa, that I actually did not sleep for four nights in a row, before dd (at age 6) started a day camp program where she would be exposed to kids eating peanut butter sandwiches, for the first time. (Ironically: this day camp has gone totally nut free since then!!!) After that, I started on anti-anxiety meds which I still take.
I am hoping to get some tips to help us through this tough time.
Thanks so much,
California Mom

Posted on: Sun, 04/22/2007 - 1:01am
Greenlady's picture
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My son went through a period of extreme anxiety last year after a classmate put a peanut in his lunch (my son's friends told him about it and he didn't have a reaction). He was having full-blown panic attacks, some of symptoms of which can mimic reactions.
We were lucky to find a therapist who was willing to be educated about food allergies - at first she thought I was overly cautious, but as she read up on things, she understood better what we were dealing with. (It helped that she was allergic to bees).
She was great - she taught him some visualization techniques that really helped. If he started feeling an attack come on, he would do some breathing exercises, and visualize himself diving and swimming through cool water. (One of the principal signs of a panic attack was suddenly getting very hot).
You could probably try something like that while you're waiting for the appt - I can't imagine it would hurt, and it might help.
This year DS is back to his normal self (it helps that he as a great teacher and that the other child is NOT in his class).
I would make sure that the therapist does understand about FA - I think it's important your daughter's fears are treated with respect - if they are discounted, it could make things worse.
Hope this helps - let us know how thing out!

Posted on: Sun, 04/22/2007 - 1:04am
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Hi California Mom! My dd will be turning 12 in a few days. I am dreading the days where she starts taking risks and hope that her milk allergy will keep her from doing that (almost anything anyone is eating has milk). My only suggestion is this. Sit down with your dd and go over why the two times it was unsafe and what she and you can do to prevent that from happening again. You could show her the ingredients in the food she is eating at home. Explain how you know it does not have peanuts, because here is the ingredient list. It seems like she could conquer this if she could go over why she had those two reactions and what she will do differently to avoid them (not eat her friend`s food, only eat food she has read ingredients on). Make sense?
When my dd had anxiety in 2005 (different story, worried about a contact reaction), someone on here suggested doing a telephone session with Lisa Cipriano Collins who wrote a book about having a child with food allergies (don`t recall the name of the book). Anyhow, we never did because the anxiety blew over. Maybe you would want to do that.

Posted on: Sun, 04/22/2007 - 3:08am
Anonymous's picture
Anonymous (not verified)

California Mom, GREAT to see you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Too bad about the why though. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
I'm glad that you did see the link to the article I found this past week or so and I don't know if it's helpful at all.
It's odd, but I was thinking the same thing as Carefulmom - a call to Lisa Cipriano Collins. I remember reading that in the thread Carefulmom started and I wondered if that *might* be helpful.
I really don't have any advice, but wanted to offer my support to you and your daughter at this time.
Since they're really just starting to examine (as far as I could understand from that article) the psychological effects of FA's on people - I really hope that a therapist who can deal with FA's is easily find-able. I mean, it's hard enough to find a *good* therapist to begin with (to deal with life's issues) and then to have one to deal with something which is so specific.
So, just {{{{{BIG HUGS}}}}} from me and I am so sorry but I have no advice whatsoever.
[img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
Good to see you here though. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------
There but for the Grace of God, go I.

Posted on: Sun, 04/22/2007 - 3:26am
April in KC's picture
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Joined: 08/28/2006 - 09:00

Edited to get the book title right...
When Nate was 5, following a very severe reaction, he went through a period of intense anxiety about his PA. He stopped eating foods that were not "safe," but his definition of safe was very restrictive (more like irrational OCD). For example, he liked clear and light colored foods so he could see whether there was anything peanut-colored in it. For a little while, there were only 6 foods he would eat.
We did take him to a counselor. It helped a bit, but time and talking it through helped, too. He was an undiagnosed Celiac at the time, so we're not sure how much the gluten played into his behavioral symptoms.
There is a really funny (but irreverent) short story / comic written by a guy with a peanut allergy. His name is Adrian Tomine; he sometimes does cartoons for the New Yorker. He really has a peanut allergy. The comic "Allergic" can be found in his book 32 Stories. It contains some curse words, so you would have to decide whether it is appropriate for your daughter.
In it, he shares some of his own experiences and frustrations of growing up with a peanut allergy. He talks about reactions from cross contamination, peer pressure and bullying. In one or two frames, he talks about a "phase" he went through as an adolescent where he was worried about EVERYTHING because of the PA, and about how his fears got better over time. It's touching and humorous all at the same time.
I read the comic to Nate (skipping any parts I didn't like, substituting the word "Stuff" for "sh*t")---and he LOVED it. I think it really helped him to see that someone else had gone through what he went through, and came out the other side.
Highly recommended--just screen it first.
You can get it on Amazon.com.
Best of luck.
April
[This message has been edited by April in KC (edited April 22, 2007).]

Posted on: Sun, 04/22/2007 - 8:57am
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

No advice to add at all - we haven't dealt with this yet. Just came on to shout "HI" and wave wildly! Good to see you [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] , but sorry about why.
If you come to visit the in laws, be sure to give me a call!
Amy
[This message has been edited by Going Nuts (edited April 22, 2007).]

Posted on: Sun, 04/22/2007 - 10:54am
Daisy's picture
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Joined: 01/16/2006 - 09:00

Hello,
Ok, like you said, you have been "in charge" of her allergy for so many years now. It is only natural for her to go through the same anxiety when she is getting to the age where she will "take over" the responsibility for her allergy from you.
I know you don't want her to go into full-blown anxiety/panic, but I think a good measure of it can help keep her safe as she starts to maneuver through her teenage years. [i]I wish more of our teens had a sense of their own mortality when learning to drive. It could very well keep them alive. Unfortunately, research shows that most young adults don't usually develop this "sense" until into their twenties.[/i]
Early last year, when I was having what seemed like my ump-teenth mild-to-moderate reaction to "heaven knows what," I dropped in on my Allergist. It was really getting me down, especially because I felt like I had no control of the situation. My systemics would just come from out of the blue. Sometimes when I hadn't even eaten anything for hours.
I was almost in tears when he came in the room. I told him I had not eaten anything out of the ordinary that morning. I said, "Am I losing my mind, or is this real?" [i]Because my reactions only involve internal symptoms...high heart rate, palpitations, flushing...they can easily be mistaken for anxiety/panic by an untrained nurse or Doc. Of course, that only adds to the anxiety.[/i]
He responded, "I think there is some measure of anxiety that goes along with allergy, especially food allergies." We discussed how I could limit my foods for a while, in case I was developing another allergy, etc... [b]But mostly, it just helped that he believed me. And was willing to work with me.[/b] He is a partner in my allergies, like my husband and daughter. Everyone around me does their part to help keep me safe. BTW, we figured out my reactions were actually coming from 2nd hand exposure, i.e. something hubby or DD had eaten/touched.
When I start to question my feelings, "am I having a reaction?", I find it helpful to go over my standard symptoms with the Anaphylaxis Symptoms and Grading Chart. I try to see if the symptoms fit somewhere in there, and I often write them down as they begin. Most often, the odd little tickle in my throat is just that, and not the beginning of a systemic. But it helps to arm yourself with facts.
While it is still fresh in her mind, have her list exactly how she felt for her two most recent reactions. When your DD begins to say she is "having a reaction," have *her* list her symptoms. Make *her* be in charge of the list. Get *her* to print out the Anaphylaxis Symptoms & Grading Chart to keep with her in her purse. Try to give the control and the decision over to her. And having her approach it from a clinical point of view will allow her to be honest about her symptoms, thus not disregarding a "real" symptom.
She will have to manage herself in just a few more years. At least with her heightened awareness, she will hopefully be more careful.
{{{HUGS to both of you}}}
Daisy

Posted on: Mon, 04/23/2007 - 2:18pm
Nutternomore's picture
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California Mom,
Hey there (waving from across the Bay!)...great to hear from you again, but sorry for the circumstances. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
Although we haven't been through this lifestage yet (sorry - no specific advise), Daisy's post really resonated with me as to providing some age-appropriate context to the situation.
If you're up to it, please continue to share with us how things work out. I know the lessons learned here (for DD) can help others whose children approach the teen years.

Posted on: Tue, 04/24/2007 - 6:52am
California Mom's picture
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Joined: 07/14/2000 - 09:00

Thank you all so much for the helpful advice! (and the waves, too! [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img])
I do like the idea of talking with Lisa Cipriano Collins. I have her book, although it's been a long time since I've read her book. She would surely understand the situation.
I appreciate the reminders that the average therapist is simply not going to "get" the nuances of the food allergy anxiety. It is such a complex issue, since it is imperitive that dd be ever vigilant and always cautious about what she eats. Somehow she will need to move to a place where she can take on the challenge of doing this for herself without panicking too much.
Greenlady, what an awful experience for your son, to have a child actually put a peanut in his lunch. I am so glad to hear that he is doing so much better now, with his anxiety. I will try some of the techniques you mentioned with my dd.
Carefulmom, I think your suggestions make a lot of sense, too. I am glad that your dd is more sensible about managing her allergies than mine has been! I think we would have avoided this particular trauma if my dd had been more careful. I am going to take your advice and spend time with dd going over the situations that did cause her reactions, and what precautions she is taking to avoid future reactions.
ATM, I'm so glad to see you, too!!! Thank you for posting that article. If we do see a therapist, that article will be a "must read" for the therapist before we even start. Thank you for your hugs, and please take some from me! {{{{BIG HUGS}}}}
April, that book does sound very interesting! I did look it up on Amazon, and unfortunately: I do feel the language is too strong for dd at this point. (I couldn't get away with the word substitutions at 12! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img])
Going Nuts: One of these days we will have to make it back out to see the in-laws. They have been coming here, which has been nice. This winter we are all meeting in Florida. But I promise I will get in touch before we come East again!
Daisy, I love your advice about making the list of symptoms of a reaction. The anaphylaxis and Granding Chart is a great idea, too. I appreciate your hugs, and I am so very glad that your doctor was so understanding.
Hi Nutternomore: waves to you, too!
I promise I will keep you all updated on life with a risk taking, yet anxious, pre- adolescent!!!!!!!!
Again, I appreciate everyone's advice, thoughts, waves, hugs, and support so very much!!!!!!!
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] California Mom

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