13 year old recently diagnosed, what's a mother to do?

[Karen]

Hello! I'm new to peanut allergy, my DD (13) has had some health issues for a couple of years. She's seen several specialists, most recently an allergist. We made the appointment just trying to rule everything out, since we still after two years don't have a complete diagnosis. She has been tentatively diagnosed with endometriosis and for those symptoms she seems to be doing much better on a different medicine. But we were still stumped about the angioedema that she had last January. There was no rhyme or reason, her face just blew up over night! She looked like a puffer fish! The allergist was booking about a month out, lucky though because about 2 weeks before her appointment she told me that her throat was itchy every time she had a PB&J. Of course I told her not to eat anything with peanuts until we had talked with the allergist. But since she is a teenager, she experimented a little and tried just a couple peanut M&M's and a few other things throughout that time period and told me afterwards that every time she ate anything with peanuts in it, her throat would itch. Fortunately, they went ahead and added peanut to her allergy test. Her entire back was covered with huge welts! She tested positive for nearly everything they tested her for! The allergist gave her an Rx for Epi-Pen and showed her how to use it, but I don't feel very knowledgeable at all! I have a few questions that I'm waiting for a call back from the allergy clinic.
Just a little more information:
1. There is no school nurse.
2. There are three schools in town – K-3rd (primary), 4th-6th (secondary) and 7th – 12th (high school). The middle school is downstairs and the high school is upstairs, so she'll be upstairs this coming year along with all the admin staff.
3. All three schools eat lunch at the secondary building about 3 blocks from the high school. Mostly they walk, but in severe weather (we live in Eastern Montana) they get a bus.
4. The vice principle has been amazing! He helped get her a 504plan last school year when all of her health issues were in full swing.
5. We live in a little town, less than 2000. The EMS from what I understand is hit or miss. (They are ALL volunteers.)
6. We don't have a "real" ER! When you get there, the doctor on call is called and you sign a form that says they have 30 minutes to get there! They can and do prescribe medications/treatments over the phone if necessary, but I don't think the person at the front desk is more than an LPN. (Actually I think they are CNA's) The do have a helicopter that comes to pick up patients if necessary, but it also takes time.
So, suffice it to say that I'm a little nervous! I have 3 children (13DD, 16DS, 24DS), and I've never been this nervous about anything! I'm usually a very calm person and roll with the punches.
At first leaving the clinic, I was feeling like we solved part of my daughter's mystery health issues! But then after a few days, I'm wondering; what do I need to do? How dangerous is this allergy for her? I know that for some people it is extremely dangerous and they can't even touch peanuts. A couple days after her appointment she was babysitting and made the kids PB&J sandwiches and I thought, "Should she be wearing gloves?" Should she even be making that sandwich?"
I ask if she has her Epi-Pen and her phone in her bag every time she leaves and she just seems so exasperated by me even asking, even though she did forget it. I've always asked about the phone and although she was a bit annoyed, not nearly as much as when I ask about the Epi-Pen.
I have noticed on the majority of posts that they are mostly about young children (toddler through the elementary years), I don't even know what she needs for the revised 504plan to include the PA! Since she's 13 at onset does that mean anything as far as severity? She's usually very mature and handles herself very well, so I'm not worried about her taking risks now that she knows about her allergy, she's become quite a label reader in the last couple of weeks! I've read some of the sample 504plans and some require a peanut free environment, does she need that? I'm not worried about what she will eat, I'm more worried about cross contamination; in the cafeteria or homemade goodies. Is it unreasonable to just ask for proper labeling? Or is that too much? Or not enough? I would think it would be somewhat different for a teen than it would be for an elementary student or toddler? I had a home daycare for 7 years and a daycare center for almost 5 years and never had anyone with a PA walk through my doors, this is all new to me!
I would love to hear from parents of children who were diagnosed in their teen years!
Thanks for any input!

[CMdeux]

Karen, first-- a warm welcome to you! 


Second, I have a 15yo DD, but-- as you noted, yes, she was diagnosed as a tiny tot.  I can't imagine the difficulty that your daughter is facing with a brand new diagnosis that has altered her life so substantially at thirteen.  Wow.  She has my deepest sympathy-- as do you, of course!!

I developed a shellfish allergy slowly-- about the way that your DD's allergy was uncovered, in fact-- and I will say that unless you've truly been scared by your allergy, you do tend to go through periods of trying to rationalize it away, and "experimenting" with limits.

That is probably to be expected, honestly.  Making sure that she has a way to reach you, and making sure that she has epinephrine-- even if it irritates her that you're asking...  You are doing a good job, Mom!! 

It's also possible that there is something else going on entirely, and that she really isn't allergic to peanuts.  Er-- well, she is, probably-- but there might be something else UNDER that, that's what I'm trying to say.    There are other disorders of the immune system that can mimic a food allergy-- and believe it or not, local symptoms can be the result of a POLLEN allergy run amok!!  Grass pollen cross reacts pretty strongly with peanuts and some other foods, and can lead to the body mistakenly reacting to those foods as if they were the pollen, instead.

The reason that I might dig a little deeper is that if she's been eating peanuts for years, and has had only symptoms that are in areas of CONTACT with the allergen (that is, the itching after eating, and even some swelling can be due to this) then she's probably at much lower risk of a fatal reaction to the allergen.  The other thing that you might consider is allergen component blood testing-- which can reveal which individual seed storage proteins a person is reactive toward.  Some of those proteins are associated with very severe anaphylactic reactions, and some are associated with localized or minor reactions, and seldom (if ever) systemic life-threatening ones.

You might be able to get some peace of mind back if you have that info.  And even if the news is bad rather than good, at least you'll KNOW that your next steps are necessary.

Living in a super-small community as you do, (and living rurally in the west) means that you have to prepare for emergency medical conditions quite differently than those living in major urban centers do.  TALK to local providers, and help them to be prepared for an anaphylactic emergency-- with the right drugs, medication orders and treatment orders that are in place and ready for execution when needed, etc.  That way, the on-call physician CAN just authorize the treatment plan while s/he is en route.  Seconds and minutes definitely count. 

Discuss whether or not calling for transport is a good idea, or if adults should be prepared to call dispatch/county emergency services and ADVISE them that you are en route and need immediate assistance upon arrival.  They'll need to treat anaphylaxis about the way that they would a major trauma-- NOT as a typical 'urgent care' case.

[momma2boys]

It's late and I will come back to re-read and respond tomorrow. I definitely would stop making pb&j sandwiches if I were her though!

[Macabre]

First--you should know that skin prick tests have false positives a high percentage of the time.  I recommend a blood test (which still can have a false postive but less of a chance). And getting the component test is a great idea. So helpful.

I would also get plenty of epinephrine. Think of each one buying 15 minutes. Your dd should carry at least two all the time. If your insurance covers AuviQ auto injectors, my 16 year old son prefers them. But he carries them in his pocket and girls can use purses, so carrying epis may not be that big of a deal. The AuviQ is voice guided, which is great for teens if they have a reaction with friends and the friends need to administer.

It's got to be really hard for her at this age.

[momma2boys]

Skin test or blood test, I think the itchy throat is a pretty good sign she is allergic. I developed a banana allergy in my late teens. It started with itchy lips then gradually was itchy throat and then full blown reaction, so it can happen that way.

[Macabre]

Yeah, me, too.

I meant to mention the SPT with regard to all the other foods she was positive for. She is likely not allergic to all of them. But peanut--I would trust reaction history there.

[momma2boys]

Oh, gotcha! I missed the part about testing positive to other things.

[fuji]

To clarify,
DD had no previous food allergy symptoms at all until the past year or so. It started with the itchy throat for tomatoes, cucumbers, avocados and I swear she said cherries, but now she says she never had any symptoms with cherries. I was told by the allergist that those were probably all OAS, due to the fact that our family has rampant "hay fever". However, the SPT was not able to be performed at that appointment because we were not told that she couldn't take antihistamines prior to. And our local health care provider had her on Zyrtec every day since the angioedema, we didn't miss a dose! (Which was really annoying because it was over 200 miles out of our way, which cost us not only time but gas and a hotel room!  :banghead:Fortunately, when I talked to the Doctor she told me she also travels to the "city" (if you can call it that?) that is closer to us, only 80 miles! And she could approve a gas voucher, not much but better than a sharp stick in the eye!) Appointments were running about a month out and within that time period DD said that peanut's were causing her an itchy throat now too! Due to the itchy throat of peanuts, they added that to the SPT, the only other food they were able to test for was tomatoes and she was negative, avocados and cucumbers were not in their travel kit. So to date, the only food she has tested positive for is peanut, however she stays away from the others just in case. So with that information, is the SPT more likely to be accurate? One other question if you don't mind? My DD has been through a lot in the past 2 years trying to figure out what is wrong with her and while I do believe she has endometriosis I think that she has some sort of autoimmune disorder and I have read in a couple of places that autoimmune disorders can cause all kinds of problems including food allergies and making other things like endo to be more symptomatic. Anyone happen to know what autoimmune disorders would?

[CMdeux]

Not "autoimmune" specifically,  but perhaps someone else knows something I don't there.  What can be the case is that a new allergy and ongoing, chronic exposure can result in fairly global "allergy" to everything.  At least it can SEEM that way.

Sounds like she has at least two separate OAS things happening-- and fwiw, my DD also has had pretty severe problems with cherries, but only a few times.  I don't pretend to understand that, but she eats them now without difficulty. 

So.  Cherries, plums, peaches, apples-- those are all birch-pollen related.

Cucumbers, melons, (and I'm thinking maybe banana??) are ragweed and generally late-summer WEED pollen related.

grass pollen offenders are less well-recognized, but I know that the list does include peanut.  And maybe hazelnuts.

Banana and avocado, though... those tend to be cross-reactives with LATEX.  Just thought I'd mention that.

It is a great sign that your allergist understands the connection between pollen allergies and food allergies, btw.  Many allergists do not.

What even good allergists like that may be slow to realize, though, is that the conventional wisdom re: OAS (that it isn't dangerous, it is just annoying, etc.) is probably WRONG for anyone born after ~1995.  There is no bright line between OAS and "true" food allergy-- and OAS can become a "real" allergy to the food, sometimes without warning.  Anyone that has highly atopic genetics probably needs to be aware of that, particularly if those atopic genes include anyone in the family having anaphylaxis Hx, or if the trigger is related to latex or nuts (both higher risk for anaphylactic responses).


I don't know if any of that is helpful. 

Mast cell disorders can mimic allergies, and there are some rare genetic conditions that can, as well-- but that seems unlikely in someone your DD's age. 

[fuji]

Thank you for all of your posts! You all have given me quite a bit to think about and I've added a lot to my "list" of things to do/ask/research!

Update: I spoke with DD's allergy Dr. and along with myself and a few of you that was the most concerning part for her as well. She suggested DD has it included in 504 for an adult to walk with or give a ride. My daughter is not keen on that at all! I asked Dr. about having a couple of her friends trained but she wasn't liking that so well.  Not really sure what I'll do about that? Still thinking...

[yelloww]

About your dd not being keen on certain aspects involving adults, I'd tell her "too bad."  Better to have an adult with her who is trained, or even a friend if need be, than to have her alone in an emergency. I'm guessing that doesn't like it because she's 13 and it's not cool because it makes her stand out as different from her peers during a time when students want to conform more than anything. (I have a 13 yr old and I have taught middle school.Their brains are wacky at 13.)

Just make the rules about how things will be handled at school if something happens, and "too bad" if she doesn't want an adult w her. She's not a legal adult. That's just the way it is. Safety first. Not coolness.

Maybe let her choose 2-3 friends to train if at all possible...that gives her ownership of part if this.

Most HS students have trusted friends who know how to administer the Epi. That's their close circle of friends. Legally, someone from the district needs to travel with her if something happens at school to CYA or the district.

Good luck adjusting to all of this!

[CMdeux]

Yeah, really-- it's the school's problem to figure out, honestly.  That's one perspective-- legally, THEY are the ones who are "on the hook" liability-wise during that lunch period, yes?

I realize that isn't the pragmatic thing, necessarily, but it's to point out that the SCHOOL may not be happy with only a handful of friends (er-- or worse, nobody at all) knowing how to help her.

They might be willing to compromise if she's willing to walk with a group of trusted friends.

[fuji]

I have no idea about the legalities here or what that may mean for my daughter/our family and the school. This school district is comprised of only three schools, K-3, 4-6, 7-8 & 9-12. (The middle and high schools are actually in the same building.) There are less than 70 students in the middle and less than 125 in the high school. It's a small town and we are very new here, so I don't know how they go about doing things. While my mission is to keep my daughter safe, that also means her mental health and if she has an adult walking her back and forth like an elementary student that could be detrimental. One option I thought of would be if there was an adult that just walked behind her, even if she didn't know they were there for her,  she would be safe because they could be looking out for her. It's not a long walk, probably takes the kids less than 5 minutes to get there, we aren't talking about a long walk across a big city. I will definitely be talking to the vice principal and figuring something out that will keep her safe and maintain her self esteem. If anyone has any other ideas, I'm open to hearing them!

[CMdeux]

Like "lunch monitors" but for older kids!  That's a really nice solution-- maybe a school volunteer or other staffer would be willing to rotate the job between a few people. 

I like that idea-- particularly if this is more about GENERAL student chaperonage, and not about your DD in particular.  I mean, any number of things can happen to/with under-supervised middle and high school students, even in a VERY small town.  Trust me on that one.  LOL.

Students at 12-14yo probably shouldn't be unsupervised while they are under the school's official duty-of-care.  Period.  The allergy just provides a very legitimate and easy to understand reason.