Even though we’re full throttle with mid-summer fun, camps are all-year-long good times and learning through winter and spring breaks too. When I spy a cool looking camp, the first thing I do is break out my food allergy Mama magnifier in search of allergen and asthma threats and fast access to emergency response. My friend Vanda had received her first, “no we can’t administer epinephrine” two months ago and now I have my own recent “no” under my belt too.
A friend called with information about a fun swim, golf and tennis day camp that we thought our kids could enjoy attending together. We chatted about pricing, carpooling and the kids having a blast…until I read the brochure: “Please notify us in writing if your child has any allergies. Then in bold…We cannot administer any medications.” Oh my.
photo courtesy of prometeogallergy.com
This was my first personal flat-out no. Even though, it was not the answer I was seeking, it was a honest answer that clearly outlined how this private camp was going to manage allergies; they were not. At this point of managing food allergies for 11 years, I would much rather hear the not-so-PC (politically correct) but true answer. I refuse to place my child at risk and in the hands of someone who is forced to manage something they do not want to manage. What do you think the odds are of those caregivers doing a great job? If this were a publicly funded camp, then my child would have been covered under the Americans With Disabilities Act and we would be having a completely different conversation. If I was very interested in this camp then I might have approached it as my friend Vanda did.
photo courtesy of abetterbagofgroceries.com
Vanda signed her child up for a day camp that he had attended over the last couple of years. After sending in her check and close to the beginning of camp, she got word that they could not administer epinephrine for liability reasons. Needless to say, Vanda was confused, her son had been attending this camp and knew the owners?!? Today, she is sharing her thoughts and approach that she used to help the camp owners better understand management of campers with food allergies…
photo courtesy of dashinspirations.wordpress.com
Vanda’s reasons camps should consider not be fearful of liability issues related to administering the epinephrine:
1) Epi-Pen® training is part of the American Red Cross and Heart Associations First Aid and CPR training. This training is usually required for childcare professionals. If it is part of a training they are already required to get, why would they be any more liable using an Epi-Pen® then giving CPR or following any other of the training that is included in the class. Why be required to take the class if they are not meant to use all the information? (Red Cross First Aid Guidelines, see page 3 for anaphylaxis guidelines)
2) Liability comes only when harm is done. Epinephrine is a benign medication… the administration of epinephrine causes no harm (note from Caroline: usually the epinephrine is prescribed by a physician for the child-therefore, the drug has been deemed safe. The only instance this could be an issue is if the child has a special heart condition and the physician should be aware of this). I could give epinephrine to my child right now, even if he did not need it and it would cause no harm. In this way, if is different from other medications which could be overdosed or could cause harm if given when not needed. The Epi-Pen® can not be overdosed as it is a single dose shot and even when given when not needed will do no harm. No Harm = No Liability.
3) The Good Samaritan Laws are meant to cover exactly this kind of situation. Under them, anybody on the street should be able to administer the Epi-Pen® ( note from Caroline: check your state’s Good Sam law for specifics), this would be especially true for a teacher who has been specifically trained and authorized by the parent of a food allergic child.
4) FAAN Guidelines for Managing Food Allergies at Camp in conjunction with the Association of Camp Nurses specifically for camps. It recommends that camp staff learn how to use the Epi-Pen®.
5) A court ruling regarding a child care facility who made the decision to not provide medications. The case was filed under the American with Disabilities Act law La Petite Academy of which food allergy is classified as a disability, and was included in the case. The ruling said that the child care facility was required to train two staff members to be able to dispense the medication, including the Epi-Pen®. FAAN said that they have worked with camps who have used this as justification with liability issues to continue to allow kids with eEpi-Pen® to attend the camp.
6) Insurance companies look for liability issues. There might be another liability issue with the decision to not administer medication in general. Hypothetically, if a parent agreed to send their child to a camp knowing that you will only call 911 in an anaphylactic reaction… what if the child then had a reaction… REMSA (the ambulance service in Reno) says they take almost 9 minutes to respond in town. That is a scary amount of time for an anaphylactic reaction. In that time, if the child died and the teacher did not give him the epinephrine, even if the child was wearing it around his waist and the teacher had been trained to use it (at the mandatory First Aid and CPR training), it might make the teacher negligent/liable in another way. This might put the camp in a worse personal liability situation to avoid an insurance liability situation. (note from Caroline: this may be a great question to ask your lawyer)
7) Food allergy is just more common these days. Anyone working with children might just need to accept that knowing how to, and being willing to, administer the Epi-Pen® just is part of the job.
8) The immediate, life-threatening, and time sensitive nature of anaphylaxis may be most closely compared to responding to choking. This is part of the Red Cross CPR training, as well. If a child was choking, a teacher would not call 911 and wait for the ambulance. They would give the Heimlich maneuver and would likely not even hesitate. Waiting for an ambulance, in this case, is much more dangerous than giving the Epi-Pen®, or giving the Heimlich maneuver.
9) The new Washoe County School District Management of Students with Food Anaphylaxis have taken a very proactive and supportive role with the management of food allergy. I think any local school district sets a tone for the level of care and treatment of the children who live there and the other service providers who operate in the district. This document errs on the side of prevention, education, support, and inclusion in these matters, rather than exclusion.Success was Vanda’s! She convinced the small private day camp to continue their policy and procedures and her child enjoyed a safe and wonderful camp. Kudos to Vanda for taking the time to not just sit at her table complaining but for picking up her pen and phone and working with the owners by doing some research and taking action.
judie
Most of these fun camps are funded by non-profit agencies with a limited budget. They hire a ‘Camp Medic’ who may only have a CPR/First Aid certification. Without large donations or a plump grant, they find it difficult to staff a full-time nurse or paramedic who can administer medications. Rather than lose the opportunity to give many students a fun week (or few days), they limit campers based on health issues.
It’s a double-edged sword, Caroline. Suing the camp/agency might mean that the camp goes away completely -and no child enjoys the opportunity. The camp may not have the best trained person to administer meds or treat your child in the case of an emergency. To save costs, they may hire or accept as a (volunteer) nurse the one who works cheapest -rather than the best trained. The camp may charge a fee for the event that is above the means of their usual demographic -possibly taking away the opportunity for lower income children to have a camp experience.
Sometimes, we’ve gotta pick our battles. When it comes to our children’s health, there are many other options to choose from for summer fun.
Caroline
Thanks Judie for your comment, but both of these camps were private. Therefore, they are not required to have any medical staff on site. Actually, the only camps my kids have attended that ever did have medical staff were the American Lung Association camps. Every camp they have ever attended, both public and private never had any sort of medical staff member available, with only a few CPR trained employees. Think of school after care. You are right about picking battles and we all must choose the one that suits our needs. For working parents who require summer childcare this is a huge issue for other just seeking fun, it is different.
judie
Private camps are different -just like private school, we can choose to pay alot of money for the service with less restrictions. I am concerned that these camps do not have any trained medical staff on site.
After school sites must have trained medical staff & they are usually American Red Cross certified in CPR/First Aid. The program is very good, but as a parent it is my responsibility to ensure that my children are in the right environment for their special needs.
Caroline
You are right! It is our job as a parent to decide if the environment is safe. Even though I’ve seen some trained staff in the past, I did not feel that person was capable. Bottom line, we must trust our own judgement and do the right thing.
judie
i’m glad that you can highlight opportunities & weaknesses for us, Caroline!
Caroline
We need each other don’t we? I always learn from you and so many others. We do have a nice community.
Lucinda
My daughter does not have life threatening allergies but she is allergic to all milk protein, casien and whey. She has a delayed reaction which includes sinus issues and headaches – the severity is based on the amount of her allergen consummed and is cummulative, so we don’t have many of the same issues that you have.
But, I was wondering about how you deal with food at the camps. Do you expect them to provide food that is free of the allergen? Or do you bring your own food even though the camp fees cover food?
My daughter is at a gymnastics day camp for this week at the gym where she trains 20 hours a week year round. The camp has not been very accomodating in their food choices. My main question is, how much can you demand (if at all), that they provide food safe for her since the fee covers lunch?
Thanks for your advice.
judie
Lucinda: Don’t depend on the camp to provide her food. It is mass produced for the campers. Send her enough milk, salad dressing, etc to get thru the week & label it. Meet with the cook to discuss meals & find a solution. The camp’s director can get you the contact info before camp begins. Follow up with the cook & director when you arrive at camp. make sure your child has plenty of probiotics & ranitidine and benedryl on hand for the week.
Remind your daughter of her food restrictions and talk to her counselor with her present. Tell her to have fun.
Caroline
Hi Lucinda, Judie is right about not expecting the camp to provide food. Here’s the deal: the chef and camp are not geared towards special diets and may not fully understand how foods can be cross contacted!
Even though you are paying for lunch, they truly may not be able to provide a safe meal for your child. Since your child is not anaphlyactic, she will not fall under the protection of the Americans with Diasbilities Act section 504. But…honestly, it sounds like you have a relationship with the gym, so I suggest ask them to accommodate her if they safe can, if not, ask for a price reduction since your child is not eating lunch and send her in with a bag lunch.
My son is attending an overnight camp in a few weeks. I emailed with the director of the program who immediately put me in contact with the chef. I met with the chef to determine if she understood allergens, cross contact and the severity of the situation. She was wonderful and did understand fully about cross contact. She offered to make my son’s meal separate or she could create all the meals nut and sesame seed free with the exception of dairy that would be served on the side (cheese for self made burritos). It is important to make sure you visit your physician for a plan for your child in case she is accidentally exposed so the camp knows how to respond and help your daughter.
I always have a plan B in mind, in case the camp can not manage the allergy. Plan B usually involves bread, sunbutter and Jelly!
did this help?
Liz Hillen
I am just about to fight this battle tomorrow – my daughter, age 7, was all set to attend a local day camp next week which is run through our city’s park and rec department in California. This would be her third year there. They have always been fantastic about the epi-pen – we have signed waivers in the past and have had nothing but wonderful support from them. All of the sudden, they are now telling me that their staff is FORBIDDEN to administer epi-pens. That their rules will change next year, but that this year they cannot do it. I would assume that if it’s through the park and rec department that this would fall under ADA?
Thanks for any advice you can give me!
judie
Liz -This is still a grey area when your child is not at a public school. First & foremost, do you really want the program to help your child with the epi pen if they are not trained?? The staff know to call 911 & your child is old enough to understand that she needs to eat only the food that you provide for her. As her parent, you can choose to provide & pay for safe daycare in your home. Everywhere else your child goes is a crapshoot. There are no guarantees -even when you are responsible for her care.
My intent is not to come across as rude, but to remind parents that WE are responsible for our children. If a program provides services like epi pen administration, we are fortunate. Since you are a resident of the city where the parks & rec program is located, you might use this opportunity to speak with your mayor & council members, the program’s director, & the city’s risk management director. In Reno, we have our wonderful blogger (Caroline) to help provide food allergy education to restaurants, schools, etc.
In the end, it’s your child’s health & wellbeing that matters most. She needs to recognize her triggers, know how to ask for help, and when/how to administer her meds. She needs a med-alert bracelet & documentation in her files at all times. Most importantly, she needs to have the chance to enjoy being 7 years old just like her peers.
Liz Hillen
Hi Judie – I appreciate your response. This particular camp has the same director, repeat staff year after year… all have been fantastic with the food allergies in prior years. My daughter has been registered for 3 months now and it is literally the highlight of her Summer. It’s all set to start next Monday (it runs all Summer long and you sign up by the week) and I find out TODAY that they are refusing to administer the epi-pen. I was told this by the wonderful program director, but the policy change is coming from the park and rec administrator. They are using the “liability reasons” and “staff not trained,” yet if they have been trained in CPR, which they have already told me they have, then they should be trained with the epi-pen, correct?
This is NOT day care – it’s a public camp through the rec department. We have a 504 for her epi-pen at (public) school.
To answer the question, “do you really want the program to help your child with the epi pen if they are not trained?” This is the thing that always gets me – There is no training given to the parent or patient when an epi-pen is prescribed! The directions are on the pen itself – it’s not brain surgery. My 7 year old happens to be a smart, outspoken and mature kid who knows what to eat, when to ask questions (always) and therefore has NEVER consumed an allergen (other than the first time which prompted the diagnosis at age 2.5.) However, the same kid also has anxiety issues and panic attacks and there is just no way for me to know how she will handle the situation in an emergency. She does know the symptoms, the signs, and what to look for, but she’s still 7. So to answer your question, YES. I really don’t care who helps her with it. Just as Vanda outlined in section 2, it’s pretty much fail safe – IF it’s administered.
So tomorrow I will go to the City’s rec dept. office and fight this with the administrator. The Camp Director all but admitted that this policy change is not her doing. She even admitted to me that they would have the policy changed by next Summer. So last Summer and next Summer are ok, but this Summer is not.
If I don’t win this battle, my daughter will still attend camp, as I have decided to attend the camp with her if they refuse to administer the epi-pen. And on the three days I have to work next week, my Mom has agreed to go to camp with her. Telling her she can’t participate at this point is NOT an option. She’s 7. She WILL go to camp.
And please know that I really do appreciate your comments – I just get very passionate when this subject comes up, as I’m sure all you other mommies out there do.
judie
Liz -Thank you for taking my comments as intended. They are never meant to hurt a parent. The epi-pen may be easy to use, but it’s a very dangerous medication that should be used in the most dire of circumstances. One may be trained in CPR/First Aid, but using the skills is very different. The most important thing is to call 911 if anyone suspects an accidental ingestion -there is no charge for fire & paramedic response in most areas (only if a patient is transported via ambulance).
Teaching your daughter to take care of her needs is a gift… and a very important one. She must forever advocate for herself. Caroline’s AAPE group & the American Lung Association are two ways that can offer you support and give your daughter leadership skills through volunteer work. No one will ever care for your daughter in the way that you do, so it’s imperative that she use her voice.
Having been in your shoes, I understand the anxiety. I wish I could tell you it becomes easier, but different concerns arise during the pre-teen & teen years. Keep reaching out via this blog & use Caroline’s experience -she’s pretty amazing.
Caroline
Hi Liz, Sorry I’ve been out all day long. Phew it was a long one too. Included sitting at my son’s reading class since the teacher won’t administer epinephrine and even if we worked with him, I still don’t trust his ability. So, I bring along my iPad and write blogs and have started the ball rolling for future reading classes since they take place and are provided by a public entity that must address the Americans with Disabilities Act, section 504.
Go for it Liz! The City will not change their policy until someone lets them know their is a problem. The biggest tip I think any of us can give you is that you need stay calm. unemotional and matter of fact like. Meaning, head down to the City, ask for the Director of Parks and Recs and tell them your conversation is urgent and has to with a disability and you are trying to avoid contacting the Office of Civil Rights by working out the situation with the director. Politely make it clear that you need to speak to a decision maker to correct this situation quickly. It’s important to be polite, but very firm that you are there to help the city make good choices that support the Americans with Disabilities Act..including kids with food allergies, asthma or other health issues that limit their actions.
In Reno, our former Director of Parks and Rec actually worked with our allergy group and brought in our training program until it was decided that a nurse needed to perform the training, which was done during the CPR training. Where in CA are you? Contacting your local parent food allergy parent support group may help as someone else may have dealt with this issue with the city. The problem with waiting for an ambulance is the response time may be too long and unacceptable. Also, if I recall, in CA not all ambulances are equipped with epinephrine, so waiting for medical personnel just won’t cut it.
I’m glad that you’ll be attending camp too. When my son first attended Asthma Day Camp, the leaders asked me to stay as they very honestly explained that foods allergies were very new to them and they did not want to endanger my son, but wanted to learn more while keeping him safe. Even though, they had a respiratory therapist, a nursing supervisor and about 10 nursing students, they wanted the savvy Mom on site and educating them regarding cross contact, etc. They approached it as a learning experience for their staff and volunteers.
Please post back and let us know how the Parks and Rec Dept is responding or if you need links to various sites. http://www.advocacybyfate.com is written by Thanita, a food allergy advocate and Mom living on the East Coast who has amazing knowledge. Visit her website too, or shoot her an email. She is my go to girl!
GOOD LUCK!!!
Caroline
Correction! Thanita’s site is Advocatebyfate.com Oh it has been a long day!
expungement
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Kelly Knickerbocker
I am so grateful to have found this website as I am experiencing a similar situation. My daughter is 5 years old with an anaphylactic tree nut allergy who is signed up for summer day camp through the city of Shoreline, Washington. We recently moved from Texas and since April have been looking forward to starting camp, especially looking forward to meeting new friends as this is such an integral part of growth and development in addition to her being an only child. She is scheduled to start day camp in one week so I contacted the Camp Shoreline Rec Center to discuss/set-up protocol but was SHOCKED to hear that they do not administer any medication for any reason regardless of a life-threatening food allergy! I questioned this matter-of-factly and he told me he would contact the city attorneys office and get back to me to be 100% sure. He called me back within minutes stating loud and clear that there is no administration of epi pens! He continued to tell me that although staff is CPR/first aid certified that they call 911 and this is all they can do. Although he supports sending letters via email to all parents of 26 kids asking to please be considerate and avoid packing lunches/snacks with nuts due to a child having allergies and also suggested my daughter and I stop by to meet staff this Saturday,
I am sitting here in disbelief, heartbroken that I may have to tell my daughter she is not going to camp, we have literally counted down the days. All day we practiced and had “drills” of what to do but as another mother stated in previous posting… we can practice all we want but in an emergency/crisis situation there is no telling what this could turn into! I learned textbook anaphylaxis but seeing it happen 3 years ago (my daughter was 2 and ingested a pistachio cracker) is a whole different story.
I am not sure how to handle the situation and as a mother of a child with a life-threatening food allergy, which many of you can empathize with, know the limitations of our children in school, at birthday parties, play dates, etc. and watching them receive “special treatment” is so very difficult. The idea of my little girl not being able to attend camp opened pandora’s box and I am ready to stand up for her (and all of your children living with an epi pen attached to their hip!).
Does the ADA protect us if this is not a private camp but rather a camp through the city? Your feedback and suggestions would be appreciated! Please tell me what to do so I can stand up for this cause!!!
Kelly Knickerbocker
kellymknickerbocker@gmail.com
281-650-4154
Caroline
Hi Kelly,
I’m not sure where you live, but more and more camps are popping up. Have you visited the Food Allergy and Anaphylaxis Connection Team website for camp TAG—a food allergy camp in several locations? http://www.foodallergyawareness.org/programs/camp_tag_%28the_allergy_gang%29-2/
I really feel for your daughter. It’s tough! We’ve all walked in your shoes and know there is an army behind you. Can you make it to the Food Allergy Bloggers Conference in Las Vegas or join a local group. Send me a private email and I’ll who is near you so I can introduce you to folks who might live close by. Caroline@gratefulfoodie.com
Also, we had the same situation in my city I believe the ADA only covers if federal funds are used. Not City. BUT…my city risk managers did review their practice and decided that they would be held more liable. Also, dependent on your state, OR and FL both have adopted entity laws, meaning a camp and stock and use epinephrine. Please visit Laurel Francouer’s website: http://www.greenlaureldocuments.com for information about the ADA. She is a rock star with 504 plans, etc. She is a lawyer and charges a super low fee, but also offers quite a bit of great information for free on her website.