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Seizures in the pool
Thu, 11/02/2006 - 20:22Topic: New to Epilepsy.com
Hi! My name is Lotten and this is my first visit to this site. My daughter Emily is 9 years old. She doesn't have a diagnosis, which is fine with me since I'm sick to death of all the labels and restrictions. At least nobody can tell us that because she has ????? she will never do ?????
Emily had seizures at birth, after a birth which damaged her brain stem, I can't convince the Doctors though since then they would have to take some responsibility. Sorry, I ramble, this isn't the time to go into her history. I took her off the meds at about 5 months old since they made her comatosed.(seriously, she had to get a feeding tube, cold water wouldn't even rouse her) She never had any more, although the neurologist saw possible activity in the right temporal lobe on subsequent EEG's. As Emily got older, she sometimes had absence seizures but nobody worried about them since they were infrequent and quick. I'm finally getting to the issue. Em has enjoyed a swim program for 3 years without any problems. She does get eye flutters when firs submerged but quickly starts to enjoy it. In the last 2 months however, Emily has had 3 seizures at the pool! Much more serious, eyes rolled back, jaw pulled down to chest and general body stiffness. We took several weeks off in between sessions hoping it was a "freak" thing, but the physio convinced me to try again. She is out of the pool now of course but I wonder if this happens to any of you guys. Emily doesn't talk so I never knows how they affect her, but she is great right after and goes right back to her routine. I would hate to put her on meds since she sleeps about 15 hours a day as it is. Thanks for letting me put this down. All Em's support staff say-run to Children's right away, but I feel that I know more than the doctors about my daughter by now. Then I stumbled on to this site and felt really excited. Lotten
Comments
Re: Seizures in the pool
Submitted by caradee on Sat, 2006-11-04 - 18:18
Hi there, and welcome. I agree with everything Cathy said. I get real nervous when someone is discribing seizures, but is reluctant to give up driving or carrying a gun or swimming. For your daughter's sake, don't let her swim anymore until she is seizure free for a very long time. I know a woman who just told me last week that her grand daughter died in a swimming pool from a seizure. She was six and her mother and father with holding her at the time. But because of the sudden stiffness, the uncontrollable jerks, and the spiradic breaths, she instantly inhaled the pool water and she drown. This is very serious and I wouldn't even let your daughter take a bath. (shower is safer)
The medication does sound like it is a trade from one horrible thing to another when it has so many side effects, but if you explain to the doc what is happening, maybe he can find another med that will be better for her. Also, after she builds up a good amount in her body, alot of the fatigue will subside.
I had a sz today (at WalMart). I fell, hit my head and smashed my elbow. The sz is gone now. I have no memory of it... but my arm still hurts and I'm sure its gonna bruise. Its not the sz that hurt so much, its our surroundings during the fall that leave the marks.
I hope you can understand why I'm telling you all of this. E is frustrating, embarrassing, hopeless, and depressing, but its a big part of me. It may be a big part of your little girl; even if they don't give it a label. Keep an open mind, seek treatment, and be safe. I hope to hear from you again.
Cara
Re: Re: Seizures in the pool
Submitted by lotten lagerquist on Tue, 2006-11-07 - 00:47
Hi Cathy and Caradee. Thank you both for your answers and support. Emily will definately not be in a pool or a bathtub after these seizures. Very interesting about that other kind of neurologist, gotta look into that. I just don't get how Em could be free of sz's for years and be triggered in the pool when she's been doing it for so long-but I guess I can't have answers to everything. How do I make a choice to put her on meds if the only time she has had the sz's is in the pool? such a big step! thanks again, Lotten
Re: Seizures in the pool
Submitted by Cathy_C on Sat, 2006-11-04 - 14:51
Hello Lotten and welcome to the forums. This is the place you want to be as far as information and support. The first thing I would do for your daughter is "get a second opinion" and quickly. It does sound like she is needing whatever medications she is on now reajusted some or even try something new. What she does definately sounds like seizures to me. I don't think I would have her in the pool unless you were right next to her in the pool also. I don't know what type of a doctor you talked to, if it was just a family doctor or not. I would hurry and find a neurologist in your area and even better yet try and find an Epitologist. The Epitologist has 3yrs more medical studies then the neurologist and they only study on Epilepsy & seizures. I know a mom wants the best for her children as do I, but we can't always see the whole picture and you really do need to find Em the right docto who can give her what she needs. I started having seizures at 16 and because no one back then knew anything about epilepsy I still have them now, I just had surgery to get rid of them. In my daughters case she was 7 when she started, at that time I knew alot about them and took her immmediately to the neurologist and she was put on Medications and by the time she was 8 1/2 her brain had healed itself and she is off medication and hasn't had a seizure since and she is now 16yrs old. So for your daughters sake, please don't wait. I hope I have been some help and encouragement. May you and Em have the best of luck. And again welcome to the forums.