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summer camp

Mon, 06/28/2010 - 23:48

I'm new to the website and am looking forward to the community support.  My 14 yr old daughter was diagnosed three weeks ago with complex partial epilepsy.  Starting in mid April she had two tonic clonic seizures a week and a half apart, both during the first part of her sleep cycle.  This was the first seizure activity we were aware of.  They put her on an initial 500mg of Keppra 2x a day hoping to put off seizure activity until our first pediatric neurology visit.  No luck, she had two pretty strong auras.  After being diagnosed they've up'd meds to 750mg 2x a day and for the last three weeks things seem pretty calm.  We have some pretty strong water safety restrictions from the doc until we know if the med dosage is correct.  Summer camp is three weeks away and the more I think about it I scared to death.  We've said no water activities without a life vest, but I think we need to have a plan.  Part of me hopes I'm overreacting, but I also think she may not have just a "bit" of epilepsy due to the frequency within a months time.  I'm very, very nervous about camp.  Your thoughts are appreciated.  I can't believe how difficult it is adjusting to our new normal.

Comments

Re: summer camp

Submitted by phylisfjohnson on Tue, 2010-06-29 - 10:00

 

If I were a caring mother, I'd be scared to death too. However, I went to summer camp with TLE for 13 years and survived.

One idea is to get her the kind of Med Alert bracelet or necklace that carries her medical information (epilepsy, meds, doses, contact info, etc.)  There are many of these offered on line. Just google Medical Alert Bracelets and take a look. It may ease your mind...

I hope this helps...     Phylis Feiner Johnson   www.epilepsytalk.com

 

If I were a caring mother, I'd be scared to death too. However, I went to summer camp with TLE for 13 years and survived.

One idea is to get her the kind of Med Alert bracelet or necklace that carries her medical information (epilepsy, meds, doses, contact info, etc.)  There are many of these offered on line. Just google Medical Alert Bracelets and take a look. It may ease your mind...

I hope this helps...     Phylis Feiner Johnson   www.epilepsytalk.com

Re: summer camp

Submitted by nabmom on Tue, 2010-06-29 - 11:52

Hi Alsia,

Contact your local Epilepsy Foundation affiliate and ask for their help in working with the camp staff to come up with a seizure action plan and help educate the staff on recognizing seizures and first aid.  There is a lot of myths and misconseptions that need to be addressed.

Btw, our affiliate Epilepsy Foundation Eastern PA runs a camp for teens with epilepsy.  The kids have a blast.

 

Hope this helps!

Ellen Baca

Hi Alsia,

Contact your local Epilepsy Foundation affiliate and ask for their help in working with the camp staff to come up with a seizure action plan and help educate the staff on recognizing seizures and first aid.  There is a lot of myths and misconseptions that need to be addressed.

Btw, our affiliate Epilepsy Foundation Eastern PA runs a camp for teens with epilepsy.  The kids have a blast.

 

Hope this helps!

Ellen Baca

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