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Author Topic: New  (Read 1765 times)

Description: DD - 3 1/2 PN/TN/Egg (baked OK)/ shrimp

Offline sljnlv

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New
« on: September 18, 2013, 11:48:24 PM »
I'm new to this group and I'm happy to have stumbled across it. I've been looking for FA support groups in our area and there don't seem to be any. My daughter was diagnosed at the end of last year and at times it all seems to be a bit overwhelming not to mention scary. Much of what I have learned about her FAs has been through pursuing the information on my own and discussing it with her allergist (her 2nd allergist). I cringe when I think of all the unsafe foods my daughter has consumed prior to learning of her FAs or at least prior to gaining a better understanding of them and the general lack of public awareness (IMO) with regard to FAs, this includes my own lack of awareness prior to my daughter's dx.

I'm finding that some people are very aware of the seriousness FAs and others have difficult time understanding or accepting that a food could be life threatening. I had a family member try to give my daughter a dessert that had nuts on top after she removed the top layer of the dessert saying that no nuts had touched the remainder of the dessert. I don't allow my daughter to eat anything that is made by other people. I'm still new to this and trying to work through determining safe vs unsafe foods for my daughter. I read all food labels and call manufacturers to determine whether or not something is safe, and to the best of knowledge, I don't have anything that contains nuts in my house. I have also starting making my own bread and ice cream. I carry multiple Epi Pens with me at all times and have avoided dining out since her dx and I bought her a medical alert bracelet which she wears at all times.
 
How my daughter came to be diagnosed. On Memorial Day weekend of 2012 my daughter was complaining of abdominal pain and didn't seem to have any other symptoms. She had just woke up from a nap so I didn't think it could have been anything that she had eaten. Within 15 minutes she vomits and I can immediately tell that she must have eaten some of my husbands chocolate-peanut butter ice cream. He said he was eating the ice cream when she woke up and her gave her a couple of bites. I had always avoided giving my daughter peanut butter or any nuts so this was her first time having peanut butter. After she vomited she said she felt better and I watched her closely to make sure nothing more serious happened. She did have a runny nose and watery eyes afterward so I gave her some Benadryl and she was fine. I looked these symptoms up on the internet and it seemed as though she could have an intolerance rather than an allergy. I discussed it with her pediatrician and he said to avoid peanut butter/peanuts for now which didn't seem to be a big deal because I didn't give them to her anyway and neither would my husband after the incident on Memorial Day.

Fast forward to the end of October 2012. I had a kids Halloween party at my house and the next day my daughter develops a rash on her arms, legs , and trunk of her body that doesn't itch. Later that night she starts to run a fever so I take her to the Pediatrician's office the next morning which is a Sunday. She doesn't see her doctor but one of his associates who tells me it's probably a virus. My daughter has the rash for 17 days during which time I took her to the doctor nine times and no one could tell me what it was. I believed that it was a reaction to something in the grass because she had been rolling around in the grass during the Halloween party. I asked the doctor to order an Immunocap Panel, both the environmental and food allergy panel. The test showed that she was positive for peanuts(IgE 23.10 which is on the low end of strongly positive), egg whites, milk, wheat, and shrimp.  I then took her to an allergist and her mysterious rash clears up the day before her appointment which was at the beginning December. They asked me if I had any pictures of the rash and I had taken several on my phone. The allergist tells me right away that it wasn't hives that it was eurethyma multiforme minor and we still don't know what caused it. He then does a skin test on my daughter for all nuts. She tests positive for all nuts except walnuts. The allergist also recommends an oral challenge for the eggs. I explained that my daughter does not like eggs and will not eat them, however she has them in baked goods. He said it was fine to have them in baked goods just don't give her any cooked/raw eggs. He also ruled out the milk, wheat, and shrimp as false positives. They showed me how to use an Epi Pen and told me if I had to use it my next step was to call 911. I left the office with a piece of paper from the Food Allergy Network and they called in a prescription for Epi Pens.

I really think they did an inadequate job of explaining the situation to me.   In March of this year we moved across the country and I got a new allergist for my daughter. He answered my questions and cleared some things up for me. He also told me that based on my daughter's Immunocap results he wouldn't rule out shrimp as a false positive.

My daughter started preschool at the beginning of this month and I really struggled with whether or not to enroll her. She goes  5 days  a week for three hours a day so she's not there for lunch which made me fell a little better about it. I've meet with the school Administrator/Director and my daughter's teachers. I provided them with Epi Pens and a FAAP signed by my daughter's allergist instructing them to administer the Epi Pen if there is a known or suspected ingestion of the allergens. I also talked to them about cross contamination. I attended a mandatory parents night with all the other parents in my daughter's class and the teacher informed the parents that she had three children with food allergies in her class, two with nut allergies and one with a severe egg allergy. I was surprised that the parent of the other nut allergic child said that her child's nut allergy was not severe. My understanding is that all peanut/nut allergies are life threatening which makes all nut allergies severe.
 
I struggle with feeling a bit anxious while my daughter is at school. I worry about what to do when she has to go to school all day. I wonder if I should try to get the school to become a nut free school (It's a private school)l or if I should home school her. I'm interested in what other people have done with regard to school, birthday parties, dining out (is it really even an option?), and any other advice, suggestions, feedback anyone has to offer...if anyone makes it this far :) If so, thanks for taking the time to read this.

Offline hezzier

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Re: New
« Reply #1 on: September 19, 2013, 07:31:47 AM »
Welcome!  It sounds like you have a good handle on the situation.  As for the anxiety, my definitely has lessened over the years (it never goes away completely), but sometimes it depends on who his teacher is.  I would definitely say the year he was in Kindergarten was incredibly stressful since he had come from an allergy friendly preschool.  2nd grades was too, but a lot of that was based on his teacher.  I had no confidence in her as a teacher, now add in the allergy aspect and it was horrible.  I didn't realize how bad until this summer when I wasn't worried who he would end up with this year.    I'm sure my anxiety will ramp back up for the teen years...oh joy!

There are some incredibly knowledgable people here who can usually answer your questions and if not, certainly point you in the right direction.
DS (15 yrs) TN
DD (17 yrs) cat, wasps and yellow jackets

NH, USA

Offline CMdeux

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Re: New
« Reply #2 on: September 19, 2013, 08:34:18 AM »
Welcome!   :bye:



Quote
The allergist also recommends an oral challenge for the eggs. I explained that my daughter does not like eggs and will not eat them, however she has them in baked goods. He said it was fine to have them in baked goods just don't give her any cooked/raw eggs. He also ruled out the milk, wheat, and shrimp as false positives. They showed me how to use an Epi Pen and told me if I had to use it my next step was to call 911. I left the office with a piece of paper from the Food Allergy Network and they called in a prescription for Epi Pens.

I really think they did an inadequate job of explaining the situation to me.   In March of this year we moved across the country and I got a new allergist for my daughter. He answered my questions and cleared some things up for me. He also told me that based on my daughter's Immunocap results he wouldn't rule out shrimp as a false positive.

I wouldn't be too quick to assume that you got bad advice from Allergist 1, there-- as a first stop, it sounds pretty awesome honestly.  About the discrepancy re: shrimp, well-- at her age, you probably just don't know.  Could be a false positive if she's eaten anything heavily cross-contaminated regularly... which may be why doc 1 told you that.  On the other hand, it COULD be meaningful if she hasn't ever had any exposure that you're aware of.  You might take a look at some posts from others here who have crustacean allergies (I'm one of them) and see if anything pops out at you. 

Most of the time, that first appointment leaves you with shellshock anyway.  It's not until later that you realize that you have all kinds of questions.  Unfortunately, no allergist can tell you the things that you really need to know--

Can we fly?

Should we homeschool??

What do I need to do to keep her safe at birthday parties?

When should I tell other people about her allergies?

Many of those things are variable and depend a LOT on what your child tolerates, how mature s/he is, and the individual circumstances that you find yourself in.   That's what a place like this exists for.    This group is the best for answering questions about all kinds of weird things.  :heart:


I'm so glad that you found us!!   :yes:
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline sljnlv

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Re: New
« Reply #3 on: September 19, 2013, 01:48:26 PM »
Hezzier -  thanks for your response. I look forward to the anxiety lessening! I feel like the more I know about this nut allergy I realize how little I really do know. My daughter went to a birthday party at a horse stable and one of the girls giving the kids pony rides was handing out feed to the kids to feed the animals. I told my daughter I didn't want her to touch it because I didn't know what was in it and it could contain something nut related. The girl, who looked  to be about 14 years old, told me it didn't have anything nut related in it and that she was allergic to all nuts. I asked her a few questions about her nut allergy but I really wanted to pick her brain.  Needless to say, I'm really happy to have found this site :)


CMdeux - thank you for responding. I don't think I got bad advice from the first allergist rather lack of advice. Like you said "No allergist can really tell you what you need to know", which is what I (and I'm sure everyone else) would have liked to have been told. With regard to the shrimp allergy...my daughter has only had one bite of shrimp ever. She did not have any type of reaction but she didn't like it (she doesn't eat meat...I think it's a texture thing for her). As far as anything cross contaminated...she has had french fries from a seafood restaurant, not on a regular basis but several times when we were on a two week vacation. I've also cooked shrimp several times, prior to her Immunocap test, and could have cross contaminated the food she was eating. That is really the only possible exposure I can think of and again she has had no reaction that I am aware of. What are your thoughts on this? Is this really to little information to go on? Her IgE for shrimp was 1.83. In your experience what is usually done to rule out shrimp definitively? Oral challenge or a skin test? I guess I've been focusing all my attention on the nut allergy since they seem to be everywhere and in everything.


Offline CMdeux

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Re: New
« Reply #4 on: September 19, 2013, 06:01:26 PM »
Shrimp is surprisingly ubiquitous, too, unfortunately.    I know that I've had reactions to the kinds of exposures that you've listed there. 

Honestly, it's possible that she's not actually allergic (especially with a RAST that low relative to her known nut allergy), but just as possible that she's allergic and just doesn't have a super-low threshold dose.  I probably would NOT change what I'd been doing based on that, since there is some newer research that shows that avoidance which is more-stringent-than-needed-to-avoid-reactions is a great way to get a LOWER reaction threshold.  (Which is something that nobody wants, clearly).

For now, I probably would "avoid overt exposure" and advise others to, as well-- but do just as you're doing; focus your efforts on the allergen that you KNOW is a problem.   There is plenty of time to investigate what that test result means as your DD gets a bit older, after all. 

:)
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline ajasfolks2

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Re: New
« Reply #5 on: September 19, 2013, 07:56:03 PM »
Hi and welcome!

Be sure to see the "Unexpected Sources" of peanut/nut thread in the peanut allergy section . . .

This gets easier, day by day.  Help yourself out by having a really good (big) binder or other organizer to keep printed info that you may want at your fingertips . . .

Many of us here have pre-teens / teens and have been through a lot of years and experiences dealing with LTFA (life-threatening food allergy).  We're happy to help any way we can.  Just ask. 

Yoga (and LONG walks) and focused breathing have been my  life saver over the past few years.

It will get easier.  Promise.   :yes:

~e

   
Is this where I blame iPhone and cuss like an old fighter pilot's wife?

**(&%@@&%$^%$#^%$#$*&      LOL!!   

Offline sljnlv

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Re: New
« Reply #6 on: September 30, 2013, 10:24:36 PM »
Thanks Ajasfolks2!