Camp not responding about being able to accommodate recent epilepsy diagnosis

[Anonymous]

not the camp for him. In college I ran a volunteer program matching college students with special needs elementary students from the most impoverished part of town (that wasn't that far from campus) and we did all sorts of fun activities. We accepted everyone and in retrospect had no idea what we were doing. I feel enormously grateful we only had one very scary incident and the child ended up being fine and the parent was incredibly forgiving. It was one big massive liability and while I think we offered a good service overall, it was not safe for all and we should have gotten way more guidance regarding who we accepted. We worked with a local organization and they just assumed we knew what we were doing.

I say all that because if this run by college students, there is no way they are trained well enough to deal emergencies and keep the other kids calm. Go where you have the utmost confidence people know what they are doing. Don't take the risk. I still feel guilty that I could have caused a child harm because we were so ill equipped to deal with the needs of every student we took.

[Anonymous]

I would say that the majority of summer camps depend on high school and college students to work as counselors. Given that, it's a lot of responsibility for them and I don't know that I would trust their level of experience in the case of an epileptic emergency.

[Anonymous]

Does the rescue medication need to be inserted rectally? Not many college age camp counselors getting paid $20 an hour are going to want to do that.

If swimming is involved he needs a 1:1 ratio. That isn’t a reasonable accommodation. That is something that a camp would find hard to provide because it is already hard for vamos to find staff.

[Anonymous]

OP, epilepsy is a very common condition, and one that your average camp full of kids is likely be able to accommodate. That said, I would ask if they can offer an activity other than swimming and not rely on the camp to provide enough coverage during swim times to keep my kid safe. Drowning is a very common cause of death with epilepsy.

-signed, a parent with a kid with a rare and catastrophic form of epilepsy who doesn’t get to go to camp because their version of epilepsy makes it impossible. But if my kid had regular epilepsy, I would definitely send them to camp.

[Anonymous]

Your post reminds me that my kid has new diagnosis, ESES epliepsy. He has not had any seizure but his risk of seizure is higher than other average kids. He has this diagnosis for more than 1 year, and it does not cross my mind that I have to disclose that to summer camp when I register online. I only disclose adhd, and he did fine last summer at camps. He is not medicated, should I disclose this diagnosis if it does not affect his behaviors?

[Anonymous]

Has your son attended this camp before (I can't remember how young it goes)? My son also received an epilepsy diagnosis before attending Headfirst. I will say they were somewhat receptive on the phone about providing 1:1 swim instruction or having him sit on the ledge of the pool when it wasn't his turn to be 1:1 with someone. That being said, it's a huge camp, and I ultimately opted for somewhere else with more support provided. A lot of my epilepsy anxiety was around overheating and dehydration and I didn't feel like Headfirst would be able to keep an eye on him to make sure he was taken care of in this way. The two we looked at instead were Beauvoir and Sheridan School's camp. They fill up early, but if you call and explain what's going on they might be able to find a spot or canceled spot for you. An epilepsy diagnosis can be so stressful! Sending love.

[Anonymous]

OP- I also have a child with epilepsy and wanted to make you aware that some of the older emergency medicines are rectal which Some places/camps are not comfortable with using. There’s also a nasal spray that can be used. You may already know this, but wanted to pass on just in case.

[Anonymous]

Anonymous wrote:Your post reminds me that my kid has new diagnosis, ESES epliepsy. He has not had any seizure but his risk of seizure is higher than other average kids. He has this diagnosis for more than 1 year, and it does not cross my mind that I have to disclose that to summer camp when I register online. I only disclose adhd, and he did fine last summer at camps. He is not medicated, should I disclose this diagnosis if it does not affect his behaviors?

DP- has your neurologist advised you that your child should not take baths alone or be near any body of water alone? I would be surprised if they have not told you that given the risk of seizures with ESES. Your camp 1000% needs to know that. There should also be a seizure action plan that tells them what they should do just in case.

[Anonymous]

Anonymous wrote:Does the rescue medication need to be inserted rectally? Not many college age camp counselors getting paid $20 an hour are going to want to do that.

If swimming is involved he needs a 1:1 ratio. That isn’t a reasonable accommodation. That is something that a camp would find hard to provide because it is already hard for vamos to find staff.

Yeah, parents of kids with epilepsy have to be OK with her child sitting out of swim activities. It’s the only safe option when you have a large ratio of campers to counselors, and/or youth counselors. (Parent of epileptic)

[Anonymous]

I would not let him swim as part of the camp.

My child attended a much sought-after camp in the area and on the second day of camp had an allergic reaction. It was not handled well at all and luckily my kid texted me and I came and helped. I'm glad they didn't end up in the hospital or worse.

Take care of your kid, the camp absolutely will not.

[Anonymous]

Anonymous wrote:OP- I also have a child with epilepsy and wanted to make you aware that some of the older emergency medicines are rectal which Some places/camps are not comfortable with using. There’s also a nasal spray that can be used. You may already know this, but wanted to pass on just in case.

Everyone uses the nasal spray now, it’s called Valtoco. The posts on this thread are really alarmist. Kids in pools should always be closely supervised, epilepsy or no.

[Anonymous]

Anonymous wrote:My child with epilepsy does many different camps. He is on seizure meds, though. Is your child? We disclose always. We provide a neurologists seizure plan.

Same. Our kid's epilepsy was controlled with medication and the neurologist was fine with camp, even sleep-away.

[Anonymous]

Listen to the camp when they are effectively telling you they are unable to accommodate your DS. Assuming best intentions, they're a camp that has at it's mission giving the most kids possible the most fun. They received your messages, they're concerned that they don't have the resources to respond (either number of staff persons, training, maturity etc), and moreso are concerned that if they say yes to you, and something does in fact go wrong, what's their liability. They don't want to disappoint you by saying no, and are probably really stewing with their response, but if they felt super comfortable about this, they would have responded already. Don't force this on them if they're not comfortable. That's not fair either.