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dont know where to turn

Sat, 01/06/2007 - 02:18
my 13 yr old daughter has had about 8 big seizures, in a few months, she has been admitted to hspital twice, her seizures are nocturnal, she is incontinent, vomits, and bites her tounge, this morning at 4.50am, she woke very confused with all the above symptoms, im at my wits end. the hospital, say the waiting list for an eeg, is about 15 weeks, any advice, shall i go private, she is soooo stressed, and is now so afraid to go to sleep, please help me.

Comments

Re: dont know where to turn

Submitted by lisabdcat on Sat, 2007-01-06 - 11:14
wow, sounds like my daughter. She is 18, has had seizures for 5 years. She also has big ones, where she is incontinent, vomits, bites her tongue, goes unconscious and then is very confused. She has these about 8 per month and has ended up in the hospital 3 times in the past 3 months, and the seizures continue. 15 weeks waiting list for eeg!!! wow, I would, if at all possible, go private. The eeg may give detailed information about your daughter's seizures that indicate certain medications above others. Right now, the doctors are really "flying blind" with trying medications. We've been through this very thing, and although the eeg and other testing has not been very conclusive for my daughter, certain meds were ruled out as being ineffective for the type of E she does have. Wish you luck with your daughter. Have you thought about a baby monitor so you can monitor her in her sleep for seizures? I use one and it seems to give a measure of comfort to my daughter when she sleeps knowing that I will know when she seizes. Lisa in Maine

Re: Re: dont know where to turn

Submitted by nicbeth35 on Sat, 2007-01-06 - 13:04
what upsets me the most is she is getting no treatment what so ever, they even told me if she has big seizures now there is no point bringing her back the the emergency department of the hospital coz there is nothing they can do till she gets this eeg. its crazy, thankyou so much for your advice, your right, our daughters seizures are scarily similar, i will ring my sister right away, and steal her old baby monitor i know she doesnt use it anymore, lol.....after this last seizure this morning i will ring my doc, on monday and insist they push this test through, i refuse to let this thing control my childs life, and at the moment thats exactly what it is doing. thankyou again.xxxxxxxxx

Hi There, Yes, it may seem

Submitted by GodivaGirl on Sat, 2007-01-06 - 23:39
Hi There, Yes, it may seem like 15 weeks is a long wait list for an EEG, but wait lists are long for medical care in general. Not sure where you're from but where I live in Ontario, Canada I'm glad I have my neuro & a family doctor. My boyfriend & I are common-law & have been living together for 5 years, and he still can't get a family doctor. The wait list in our region is about 45,000 people that's just for a family doctor. MRI's and EEG's for someone like me diagnosed, it's at least a year, so my neuro doesn't do them. And, well the family doctor I do see now has a sign on her door that says "appointments are one issue at a time - 10 minutes only". So, 3 mths for an EEG. Yup, it sucks, but unfortunately it's the way of health care today in some places. If you can afford alternatives and they are there, then do that. Instead, why not work with a medical team a little more in other ways. Have you looked at what causes your daughters seizures? Keep a seizure journal. What's different diet wise, sleep patterns, hormonal, stress, etc. Try reading up on alternative treatments if they won't do anything now. Omega 3 is supposed to help. Valerian Root can be good for some people St. John's Wort can be good for some people Meditation Stress Counselling Gym Memberships Massage Therapy ....these are just a few things I've heard of. I've personally found Omega 3, a gym membership & stress counselling helped me. I also found out that hormonal shifts, aspartame, routine changes, weather changes and feeling sick triggered my seizures. Took time, but I've found these triggers. To be honest since age 22, as much as the medical team has helped, I do just as much of the work myself searching for triggers and complementary treatment to the Keppra, Topomax and Clobazam I'm on. Personally, I look to find better alternatives so I can be on less seizure medications. I always work with my doctors, research and read up on things, but the alternatives are there. Read up on them, then ask a doctor if there's any harm in trying them short term. After all - what harm can there be in chocolate milk with Omega 3, yogurt with Omega 3, or perhaps valerian tea? Talk to doctors & pharmacists about not only moving up the tests but short term alternatives. After all, EEG results take time as well. Good luck to you!

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