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!