Food allergies and summer camp question

[Hippoharbor]

I had a very emotional morning and was wondering what other people would think/do in my situation.


My 6 yo DS has peanut/nut allergy. I have always been very vigilant about having epipen with him at all times. When I signed him up for local summer camp program, the director assured me they were peanut-friendly, i.e. safe food, other kids with epipens. Upon further questioning, I found out that the epipens stay in the camp directors office at the main school where the swimming occurs; however, for part of the day, my son's camp class is shuttled to another nearby school for arts/woodshop/etc. The director stated that the epipen remains at the main office and does not get taken to the other school. She said that only the camp directors in the office are trained to deliver epipen injections and that she would not trust camp counselors (college-aged students) to administer. I asked what would happen if there was an allergic-related incident. Her response: "They would call one of us and we would drive the epipen down there." Okay, that is 10 minutes too late if there was an emergency! When she sensed my concern over their policy, she told me that that their camp is probably not a good fit for us. This is one of the most-respected camps in the area and DS has a lot of friends attending. I reluctantly agreed to sign him up, taking a leap of faith that DS would be okay. BTW, food is served at the school campus where epipen is kept, but there could be delayed reaction occuring when he is at other campus.

This morning, as I was preparing him for first day of camp, I see the CNN article "When Food is A Killer of Children", profiling a recent case of a peanut-allergic child dying because epipen was not available. I then decided I was going to put an 'extra' epipen in my son's backpack and talk to the camp counselor. I spoke with him, gave him instructions on how to recognize symptoms and then treat reaction. He seemed very open to this. I, however, did not tell him that the camp director forbade counselors from doing this. A few minutes later, on my way out, I ran into a friend who informed me that she had to administer an epipen to her son for the first time last week. How ironic is it that I got TWO reports of food allergy complications the same morning that I was dropping him off at this school.
At that point, I went to the school administration building and asked to speak to someone who had seniority over the camp director. While in tears, sobbing actually, I explained to him how adamant the director was with not having epipens at the other location and how I had 'secretly' directed the counselor to keep epipen with my son. I expressed my fear that I was afraid that, if the director found this out, that she would still not allow the epipen to be kept in my son's backpack. He assured me that would not happen.

So, I do not know if he spoke to the director about this. I went behind her back regarding this because she was so B**chy about this issue when I signed him up and does not seem to realize how unreasonable/irresponsible her policy is. In fact, I do not think most families realize that the epipen does not travel with their child; my friend who had to administer the one last week did not realize this issue, either.

Am I being unreasonable for expecting this camp to accomodate my son's medical needs? Should I have found a different camp? Don't I have the right to advocate for my son and demand they change their policy to allow epipen to remain with child...wouldn't this situation be addressed with ADA?

Sorry so long. Thanks if you made it to the end and can respond.

[KpbS]

Oh mama, big hugs!! You did the right thing by bringing the extra epi pen and instructing the counselor and definitely talking to the administration. That director is crazy and clearly has no understanding that an allergic reaction = medical emergency! I would give it a chance ONLY if your DS was allowed to have the epi pen in the backpack that accompanies him around camp and he would have that same counselor (the one who was willing to administer the epi) and not switch groups/counselors throughout the day. Anything less than the epi pen following your DS AND having someone responsible and willing to use it in an emergency is unacceptable and I would not continue at the camp. It is absolutely reasonable for you to insist on these things and if they will not accommodate, I certainly would not send my DC. :hug::hug::hug:

[MMMommy]

I think you did what you had to do. This is a matter of life and death for your child. If having the epi-pen with him at all times is the difference between life and death, I would make sure it is with him at all times. If the camp is unwilling to bend and absolutely prohibits this, then I would definitely find a camp that will accommodate your child's needs. Your child's life is more important than an unbending camp policy.

[Hippoharbor]

One of my questions is: shouldn't camps be REQUIRED to accomodate this?

[KpbS]

One of my questions is: shouldn't camps be REQUIRED to accomodate this?

I feel like they should but I know some schools have similar policies to this camp--the epi pen is in the nurse's office/school admin. office. Not something I am comfortable with.

[maydaymommy]

I think the camp director told you it was not the right place for you, since they could not accommodate your son's very important, serious issue. I would believe her that it may not be the right fit.

And no, I don't think a private camp has to make the accommodation.

[mytwosons]

Yes; if the doctor requires the pen to be on the student, it can not be left anywhere else. My son's school routinely keeps the pens in the main office, but because our doctor said the pen had to be with my DS, it is in his room (and goes out to the playground during recess, etc.).

OP, I don't think you did anything wrong going above the camp director. She clearly doesn't understand allergies.

ETA: I would really be considering pulling my child. I pulled him from a summer camp before because I wasn't comfortable enough with the workers. The director "got it", the workers, not so much. It wasn't worth the risk, IMO.

[crl]

I wouldn't ask a counselor to do something against camp policy. That's putting a huge burden on the counselor. What if that one person goes home sick or is on break? Plus I think you risk getting him or her fired for not following camp rules, which seems unfair to me.

If the camp will not appropriately accommodate your child (and I totally agree that the epi pen needs to go with the child), then I wouldn't send my child there.

I don't know if the ADA or other law would require the camp to accommodate your child. And I certainly understand the impulse to make them do it! My fear is that if they accommodate you grudgingly they won't really do it, they will just pay lip service to it.

I think going over the director's head is the best course of action if you want your child to continue at camp. If that's what you want, I would pursue a policy change from the top with specific instructions about how it is to be carried out.

Catherine

Catherine

[JBaxter]

One of my questions is: shouldn't camps be REQUIRED to accomodate this?

Required? No should they yes. I would not want my child with a medical condition at a camp where they clearly have no training to handle a situation. Around here the hands on camp workers are highschool/college kids with someone to over see. Extra training costs extra money and camps are run on a shoe string budget as is. Camps are not like schools Camps are optional and not for all children. I dont mean this to sound crass really I don't but if your not comfortable then dont use that camp.

[alien_host]

I'm sorry you are dealing with this. I have a DC w/ peanut/treenut allergies and I would pull my DC if I were in your shoes. I can't even fathom that the director feels it is OK for the couselor to call her to DRIVE over in an emergency. Clearly this camp is not concerned about liability. Which is odd to me...or she hopes you leave so they don't have to deal with it.

FWIW, DD's school keeps the epi in the nurses office. I'm OK with it b/c they have a two pens in the cafeteria and the recess monitors take one outside as well.

What state are you in? Some states like Massachusetts are pretty good about food allergies for schools with regulations etc. I'm not sure whether it translates to camp.

I personally wouldn't want a director who doesn't seem to understand the severity of your situation or understand FA. And I agree w/ crl that going behind the director's back and asking the counselor to do it isn't fool-proof either (or fair to that counselor). I do understand you were in a bind for the first day. There needs to be a team approach here - an understanding by the director, all counselors and you on what the protocol is.

Good luck with your decision and :hug: to you.

ETA: I re-read your post. It sounds like you signed your DS up after the director told you the policy and in away discouraged you and now you have "buyer's remorse". At first read I thought you just found this out on the first day. I know as parents we have a lot of pressure to let our kids do things, but if you feel uncomfortable, I would pull him. Trust your instincts! This is another reason why I have not looked into camp for DD...it was so draining for me to make sure her school was OK that I couldn't face it.

[Hippoharbor]

He was very excited when I picked him up in carpool. The lead counselor for his group walked him out to the car and said there were not any concerns. I do not know if the director talked to him at all regarding the issue. I really feel I need to pursue this with the camp because it is unexceptable for them to not have the epipens transfer with the kids and, as I mentioned before, I assume that the other parents are unaware of this issue.

[justlearning]

This is a very emotional issue. As a mom of a child with severe nut allergies, that article on CNN scared me too. This summer he's only going to one 3-day day camp where food will be served. Although I'm paying the full price, I will be supplying his lunches and snacks on my own (even though they state that their food is nut-free, I don't want to trust that in case someone makes a mistake).

Regarding the epipen, my concern is that you're opening yourself up to a lawsuit in case another kid gets into your son's backpack, uses the epipen for fun, and has a severe reaction to the epipen. At my son's school, the only way that they will allow the teacher to keep an epipen in his classroom (in addition to the nurse's office) is if I supply it in a combination lock box. I bought mine at Staples for $20 and have it set to open with 9-1-1, which is what the nurse instructed me to do. They said that it has to be in the locked box to ensure that another kid doesn't get hold of it and use the epipen.

At my son's school, the teacher does take that locked box with her whenever they go on field trips, but she has been trained to know when and how to use the epipen. Personally, although I understand your motivation to protect your son, I do think it's a lot to ask a camp counselor who hasn't been trained to be responsible for knowing when and how to administer the epipen.

It sounds like the main director was sympathetic to your concerns, though, so hopefully they will take steps to make sure your child is safe. ((HUGS))

ETA that I wrote this post in response to your OP. I just saw your new post above mine and am glad that your DS enjoyed his camp and that you're taking steps to help them provide a safer environment for all kids.

[bubbaray]

I think the argument about a non-allergic child using an EpiPen and getting injured is just BS. That *used* to be the concern in our district, but no longer.

DD#1 has worn her EpiPen to camp every day last year (after finishing Kindy) and to school every day this year (Grade 1). She will wear it to camp every day this summer. I have a second pen that will be given to the camp as a backup each Monday.

I am just stunned that people would seriously think that having an EpiPen 10 minutes, 5 minutes or even 1 minute AWAY from an anaphylactic child is sufficient. It is not. The pen needs to go with the child everywhere the child goes. The only way to do that with a school-aged child (who can be in different classrooms, field trips, etc) is to have the child wear the pen. With younger children in a daycare setting (with much lower ratios than in schools), a caregiver can wear the pen.

OP, I would get your DS' allergist involved. Start your letter writing campaign now for NEXT year.

FWIW, I would not put my child in a camp that had those policies. For starters, money talks, so I would take my money elsewhere. Secondly, its not safe. JMHO.

ETA: the camps we use, ALL of the staff are trained in the use of EpiPens. I'm actually LESS worried about camp than I am about school.

[purpleeyes]

Aren't food allergies considered a disability? Doesn't that mean the camps are are required to provide "accomodations" like trained staff, safe place to eat, etc., like schools are?
Even if it is a private camp, aren't they bound by the same laws? My DD goes to a private school and they have to follow the same rules for her FA as they do in public schools.

[alien_host]

I'm glad your DS loved camp. I don't want to be negative, but I strongly encourage you to get your DS's "emergency action plan" documented in writing. The counselor said today was ok but if you just leave things as is, you give the camp the impression that the current protocol is acceptable/ok. It really isn't. As you said, you need to get it worked out with the "management" there. Play devil's advocate. What if the director isn't reachable or not there, what is the plan? Does everyone even know he has an allergy? And unless your child can self medicate, having his pen on him without someone to administer it doesn't do any good. Inexperienced/untrained counselers may not even give the pen if needed...they might be too scared or freeze up. It is important that everyone that is supervising your child be trained.

Do you have an emergency action plan for his school, can you start w/ that? I know it is hard, especially since he loves it but if it were me i'd be banging down the director's door and their superior's until something acceptable was put in place. It would be hard, but even if I had to I'd pull my DC if the camp can't step up. It might be too late for this summer, it took me moneths to get comfortable w/ DD's elementary school and I met w/ the principal and nurse 5 months before she started in Sept.
Please don't let the one counselor give you a false sense of security, go tomorrow AM and talk with them again. Bring paperwork from the allergist or school if you have it. Let us know how it turns out.

Sorry this is a mess, I'm on my phone.

[DrSally]

I'm so sorry. I know how emotional this situation can be, as we want our children to experience all the great things other kids experience, wo/discrimination. Some people just don't get it, and then we have to decide if we feel safe leaving them with those people.

I recently interviewed some care providers hoping to get a day off a week for myself. I was excited about this person, and then she backed out b/c she didn't feel comfortable w/DS's allergy. I was very upset, but I guess it was better that she told me.

FWIW, I think college aged kids are perfectly capable of administering an epipen. I also don't understand how giving a tutorial on administering one would cost extra money? It's not complicated.

[crl]

Aren't food allergies considered a disability? Doesn't that mean the camps are are required to provide "accomodations" like trained staff, safe place to eat, etc., like schools are?
Even if it is a private camp, aren't they bound by the same laws? My DD goes to a private school and they have to follow the same rules for her FA as they do in public schools.

I kind of think the Americans with Disabilities Act may apply here. But this is very, very far from my area of knowledge. A quick google search turned up this link. http://www.aafa.org/display.cfm?id=9&sub=19&cont=255. But I wouldn't really rely on the Internet for legal advice, you know?

Plus there is the law and there is reality. And my reality is that I would worry about a camp that is being forced to accommodate. I would much prefer voluntary buy-in.

Catherine

[egoldber]

I know that the ADA does apply to child care and there have been several lawsuits against child care chains, even ones related to allergies and the use of epipens.

You may find this interesting, especially #19 and 26.


http://www.ada.gov/childq%26a.htm

I think it is more ambiguous about whether or not ADA applies to private camps and what can be considered a reasonable accommodation.

The question of whether or not to continue him in a camp where the director does not get it is another question entirely. :hug:

If you do decide to pull him, I would make sure to ask for a full refund and would happily threaten them with an ADA lawsuit to get it. :o

[alien_host]

Plus there is the law and there is reality. And my reality is that I would worry about a camp that is being forced to accommodate. I would much prefer voluntary buy-in.

Catherine
ITA with this, *most* places at least try to be accomodating and one has to decide if it is good enough.

I hope things go well today and you can get reassurance. To be honest it bothers me that the camp sounds like it doeant want to bother I.e. the director said it wasn't a good fit (cop out or doesn't want the liability).

[ilovetivo]

Sorry i don't have time to read, but sending lots of hugs!! I'll read more later

There's fantastic resources on www.kidswithfoodallergies.org - nonprofit