Questions for those with school aged FOOD ALLERGIC children

[Anonymous]

Our son is 4 years old and has potentially life-theathening reactions to sesame,peanut and treenuts.
It is particularly the sesame that worries us, as it is currently less common so people tend to forget about it, unless constantly reminded.

We would love to hear your thoughts/experience regarding the following:

1.How often do you have bloodwork done to see your child's IgE levels?

2.Is your child's Epi-pen in a locked box at their school?

3. How do you handle playdates for elementary aged children? Do you allow your child to do overnights? Do you allow your child to do playdates at homes where you don't know the family well?

4.If in MD public school are you happy with the way your child's food allergies are being handled? Do you feel they are safe there?
If you feel comfortable telling us which schools are great please do!(public or private)

thanks to all who respond.

[Anonymous]

OP, I don't have a food allergic child. But, you asked about how epipens are kept. If you go to the MCPS website, it provides the regulations regarding how they are kept.

[Anonymous]

Op here:
I guess I should have rephrased that question to include,
Are you comfortable with your child's epi-pen being kept in locked box?
Given that the medication is very time sensitive and can be life saving it personally seems like a nonsensical rule.
I understand that all meds should be kept out of reach but I think a locked box with the possibility of the key being misplaced, getting stuck, etc, is potentially dangerous. FWIW many allergists are against the policy as well.

[Anonymous]

PP here, I suggested the link to MCPS because, even though I don't have food allergic kids, I think the idea of locking up the epipen is ridiculous. I think there are alternatives that you can explore. It will definitely be better when your child is old enough to self administer. Best to you. I can't imagine how stressful this would be.

[Anonymous]

My child is in DCPS and now in 3rd grade, but when he started in PK4 I ignored the rule about the epi pen being locked up in the nurse's office. I told the teacher there would always be one in his backpack. If it is a true emergency the time wasted trying to get out of the nurse's office is dangerous.

To answer your other questions, I trained my son to only take food from certain people when out in public -- me and my husband as well as really good friends who have known him since he was a baby. I always told him to come ask one of us four because we would always know what he could have.

I did and do let him have sleep overs, but I always give a list of what he can and can't have. Now that he is older he is more able to say yes or no to the foods. When he was younger, I always packed food that he could have for play dates. I felt safer that way.

Good luck!

[Anonymous]

I have a 6th grader with serious food allergies to milk, peanuts, and tree nuts. Our rule, since preschool, was that the bag containing EpiPens (2 of them) and Benadryl always had to be in the same room with her. No one ever gave us trouble with that, and since about age 6 or 7, she has been responsible for carrying it around herself. Backups are in the office but definitely not locked.

I would not accept the EpiPen's being in a locked box. FAAN (Food Allergy & Anaphylaxis Network) can probably give you some guidance if you need help advocating for this at your school.

On your other questions, we have lived in a few different cities. Depending on the dr and perhaps also her age and where her levels seemed to be going, we've had her RAST testing done every 6 or 12 months. We're at every 12 months now.

For playdates, I've always given a detailed briefing to the parents, which includes how to avoid an allergic reaction and what to do in case one happens. Most parents have paid very close attention and I have felt comfortable leaving my daughter with them (including on overnights starting around age 9 or 10). One parent said she wasn't comfortable and asked me to come to the playdates, and I really appreciated her being honest about it. Some parents I meet have just given me the feeling that I wouldn't want to entrust them with this, so I've made those playdates at our house, or where parents can easily come along.

On playdates when DD was younger, I vetted all the snacks beforehand, or brought her own. Now that she is older, she checks ingredient lists and vets them herself. We have a bright-line rule that she can't eat anything that doesn't have an ingredient list that has been checked by either me or, now, her.

Good luck! I'm happy to answer more questions if I can.

[Anonymous]

Thanks PP for your response.
Do you mind telling me what school she is at?
I ask because when I called a few elem schools they said over the phone that the epi must be in a locked box. We are def not comfortable with that.

[Anonymous]

I should have added, if you don't feel comfortable sharing which particular school your child attends, could you share the district if public?

[Anonymous]

8:02 here.

When my daughter was younger, she attended various preschools and regular schools (all private) out of state. It was these schools that were comfortable with the teachers carrying the bag of medicines, and later letting DD do it herself. (In fact, at one new school, it was a teacher who suggested my then-7-year-old carry the meds herself. He was concerned that the teachers might miss a hand-off and then the meds could get misplaced. This turned out to be a fabulous idea; it got her in the habit of being responsible for her own meds, and now I don't even have to ask her whether she has them when we leave the house.)

She is now in FCPS, which has very rigid rules about how to treat allergic reactions. I don't think I would have been comfortable with their rules when DD was younger. (Or with their oversight, for that matter - when there are 29 kids in a class, I think it would be too hard to see that one girl in the corner is quietly wheezing or developing hives or whatever.) At this age, it works ok for us: their official policies allow kids to carry their own meds if a doctor gives permission, and DD is good at recognizing when she is having a reaction and able to seek help.

An extra set of meds is kept in the clinic (nurse's office), along with a bazillion other EpiPens. Come to think of it, this cabinet might be locked when the clinic aide isn't there, but I'm not too worried about it because DD has her own set.

I would absolutely not be ok with the only EpiPen's being in a locked cabinet. I don't even think it's ok for a second one to be in a locker; I think it needs to be with the kid. Perhaps you could speak to the classroom teacher or principal and explain that because your child's allergies are so life-threatening, your doctor says it is essential that the meds always be with him.

I wonder if a private school (if that's an option) would be more flexible and accommodating. They usually are in other respects, and they certainly were in our experience.

[Anonymous]

Oh - I just thought of one other option. DD attended one school for a few months that either wasn't comfortable with her carrying the EpiPens around or wanted to have backups closer to her (I can't remember - it was a big campus, so that might have been it, and we moved shortly after). So we pre-staged bags of meds in each area where she would be: classroom, gym, cafeteria, specials building. Apparently they had secure enough locations in each place, but they were not locked.

[Anonymous]

OP here:Thank you again for your insight.
Yes, private school is an option for us and I am leaning toward it more and more given that they do seem to be more flexible in regards to the storage of epi-pens, based off of my conversations with some over the phone.

I particularly like your idea of having them stashed around the campus, if it's a large one.
That makes a lot of sense, especially with a young child.
Thank you.

[Anonymous]

You're welcome! Good luck navigating this.

[Anonymous]

Why not try NAET or NMT?

http://www.neuromodulationtechnique.org/Video/

http://www.youtube.com/watch?v=g4mDPH3fyEc