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

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!

By MaineMommie on Mon, 07-21-14, 19:36

My advice is to take a deep breath. I remember telling my Mom that I felt I was going to have stroke from the stress. She told me that in time we would all just adjust to the new reality. 6 years later we have.

You will need to develop your own set of rules that work beat for you and your daughter in keeping her safe. If there were hard fast rules then someone would have written a book and we'd all have it. So seek advice but remember that just because it works for others, doesn't mean it will work for you.

Trust yourself, you will make the right decisions.

My son was 1 yo when he was diagnosed. He has always been "involved" in his appointments from the beginning as soon as he started talking. We have a great allergist that talks to my son and they discuss everything.

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By basantos on Mon, 07-21-14, 16:14

My daughter, soon to be 12, was diagnosed 2 weeks ago with a peanut allergy. She would say her mouth felt funny after eating certain foods but never to the point that we thought she had an allergy. I too, have a zillion questions for the allergist. We go for a follow up appointment tomorrow and I have a list of questions. I know, from my research, that they do not know if the next time she has a peanut that her reaction may be severe. Our allergist said she was lucky to have caught it before she had a full blown reaction. We have been warned to stay away from baked goods which has been fairly easy. I don't think she has an air bourne allergy which I am thankful!! Hope you'll get some confort in the posts by others. I hope to get some more answers tomorrow. We went out to eat last night and it was strange to mention to the waitress about her allergy. It so new but thankfully 'most' places are used to dealing with peanut allergies. Good luck to you!

By smithdcrk on Sun, 07-20-14, 17:08

Our PA daughter is moving into HS this year. She has carried a kit everywhere since was 4. But in elementary and pre-school the kit stayed home and we outfitted the teacher and nurse with their own emergency kits for her. The school nurses all have yellow wheeled crates that they use for their students "life sustaining" meds: asthma inhalers, epi pens, diabeties supplies. This crate comes with them during any drill or school evacuation. It doesn't have to be the nurse. How about that great VP?

Life changes in Middle School. It was impractical to equip a kit for every teacher and activity. Since the middle school 504 update she has been "licensed to carry" not just her complete emergency kit, but her cell phone - Everywhere. The purse with her kit is stored by the school bag. This year, she even wore it to receive an academic award! She forgets that she has it on. She is more likely to leave it behind when she has been somewhere she must take it off: at a tournament, riding horses, swimming, etc. It has been a part of her for so long, most know it on sight and have happily brought it to her when found.

A new change for HS: she has switched to an AUVI-Q for her personal kit (http://www.auvi-q.com/). The AUVI-Q will walk the user though the delivery process - even counting! It is the size of a small flip phone, little bigger than a tic-tac box. With her more likely to be away from nurses, teachers & coaches as she becomes more independent, she needed an option for someone who hasn't been trained.

With the increased distances for cross country this year, she also carries the Auvi-q and her phone in a small running belt pouch originally designed for "Goo packs" and ipods. It blends in so well under her shirt that her coach did not know she was "carrying."

Is there a fire station where the volunteers gather for a shift? To educate them with out being too obvious, bring them something homemade that is peanut free with a card "Thank you for stepping up." Let them know you have an EPI pen and aren't afraid to use it, but in an emergency you will also need their skills. They will remember your family. If a 911 call comes in, they will know you and may be more engaged. Maybe they have questions, too? This web site and foodallergy.org might prove to be good resources for them!

By jap on Sun, 07-20-14, 15:36

To be honest you should be very concerned.1/300th of a peanut can kill a person.Having said that my daughter is 16, first reaction at 1, never had one since.

Best advise i can give is never eat out, prepare your own food and bring it for your child explain to the restaurant. My daughter does eat at mcd and wendy's + subway.

Always carry 2 epi pens, my daughter can have a 2nd epi after 5 minutes and keep them at the storage temp (cooler for the beach)

look up the new peanut test called a peanut component pannel , done through the blood, maps out of 9 risk factors every possibility and child's dangerous to peanut.

Your child might also be allergic to peas, lentils and soy, same family.

look at my other posts , there is a link to tumbler and my daughters school peanut plan is posted,
let me know if you get it
julian

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By smithdcrk on Sun, 07-20-14, 20:14

Heads up on Subway. That was one of our favorites until recently. Recently, I stopped to get my son a tuna sub before he headed off to his college classes. The place was busy. The manager made a frantic call for more cookies up front. The bread baker came out from the back, made a batch of cookies, then arranged bread in the warming oven, then grabbed a toaster item, and jumped into the prep line to complete the toppings to the toasted order. Never changed his gloves from cookie dough, to bread, to toaster, to veggies.

My intent was to return later with my PA daughter when she left school in an hour. I did not return, grateful that we had seen the slip up and she had not be exposed to peanuts accidently.

I had been assured that the Subway cookie and bread prep/handle never mix, but it did that day. This may be rare, and a good manager would educate and enforce good food hygiene. Gloves that have just handled food that must be cooked and cannot be eaten raw should never serve food to be eaten as is. Not to mention the pn/tn cross contact issues. We always asked for a glove change, but that would not have protected her that day with the pn/tn contact in breas, toaster handle and in the veggies.

We did the peanut panel too. They provide an excellent visual to show potential issues. My daughter red lined and/or maxed everything except for the lentil and legume markers (blue). After seeing a chart like that no one says, "Surely, a little bit won't hurt?" Now I get, "That's why you are so careful!" Information is power.

By PeanutAllergy.com on Fri, 07-18-14, 22:26

Question of the Week: Answered!
Every week, PeanutAllergy.com is answering one of the questions posted in our community.
Our Answer:
Thank you for reaching out to our community! Be proud of yourself for taking the initiative to safeguard your daughter. You may be confused and anxious now, but you’ll learn a great deal very quickly and feel comfortable and confident dealing with PA. While there may not be a singular, universal approach to raising children with PA, we are all concerned with the safety of our children.

It’s great that your daughter hasn’t suffered a more serious reaction after eating peanuts and handling peanut butter, but you’re right to question these practices. She may get annoyed when you constantly remind her to carry her EpiPen, but keep at it. Communicate with her of the importance of having it at all times and that you’re simply making sure her life isn’t in danger.

While it’s important to have her school create a reasonably safe environment for her, a completely peanut-free campus may not be realistic nor necessary. A great discussion about regulating schools for allergy sufferers can be seen here.

Your option of requesting proper labeling sounds fair. While the school cafeteria will always be a worrisome area, it’s important that the people who eat lunch near your daughter be sensitive to her allergy and not eat any dangerous foods. Additionally, you can contact the parents of your daughter’s friends and request that they not pack foods she may react to.

Since you’re new to PA, here’s a link to some tips for when to contact a doctor and when to contact emergency response. And here you can see what the consensus is on how to react to accidental ingestion of an allergen.

Here’s a great article about a mother’s journey with her 13-year-old PA allergic son and how she’s gone about keeping his surroundings safe while instilling a great sense of independence and caution in him.

We hope we’ve helped and gotten you on your way! There will always be more for you to learn and experience on your own. Be comfortable with your physician and contact him/her when you need to. And don’t ever feel shy to reach out to our community! We’re here to help!

We asked our Facebook fans to share their insights, and you can read them here.

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