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Post by lincldad on Mar 31, 2009 21:31:48 GMT -5
I always want my daughter to be comfortable, but how far do you go, before pushing for a totally new approach. We've had a bought with tics (clonus?) lately and were one foot from the hospital. Mind you, we are always just a breath away from hospitalization. We got another med added to our daunting list, but it is not totally working. What we did accomplish was the ability for her to sleep. The tics had gotten so bad she was having trouble sleeping (this happened very quickly, days) My feelings have kind of always veered towards, if it doesn't stop her from sleeping, then we can live a little while with it. Her O2 is always normal so I kind of hesitate to do anything until it affects her sleep. Again, how far do you take it? Thanks for your input.
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Post by Jocelyn on Mar 31, 2009 23:50:06 GMT -5
Hi My 2 children are currently experiencing the same sort of tics that you have with your daughter. We have been on a med called zonisemede which our Dr got from Japan for the past 12 months it has been very very good as far as controlling the tics but we are now finding the same with all meds that it too is becoming not as successful at holding them at bay. We have made a conscious decision like you that unless the tics are causing trouble at bedtime (and they have) we hold off using any other medications. We are at the end of the road as far as new meds to add or increasing the dosage, so we put up with the tics unless they get stronger during the day and cause distress. We use chloral hydrate starting with a small dose and increasing until they are a little sedated. We find this alot better at night when even after having their meds the tics are still keeping them from sleeping. Our doctor has told us that we are better to put up with them while we can because there will come a day when the only option will be to keep them sedated to stop the seizures. Hope this is of help to you. Regards Jocelyn
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Post by Martha from Tucson on Apr 16, 2009 19:51:43 GMT -5
My son is on 800mg of Zonegran and Carbatral. He does not have tics as such. Michael does not have Battens but has symptons close to it and was diagnosed for three years as having it. We are now going through a period of sleeping 20 hours a day for about a week or two. Also he is throwing up on the days he sleeps a lot. I know his seizure medicine is high. Is this increasing sleepiness part of the progress of Battens or the Meds? I guess that is what the neurologist was saying? I know in the last two years we have had seizures and have been increasing his meds when we had them under control before. My son is 23, feeding tube yet still can eat a little, catheter, c, cataplexy, tremors, blind, hard of hearing, bedridden. Martha
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Post by nikkiv on Apr 17, 2009 10:29:54 GMT -5
When you say "tics", are you talking about myoclonic seizure activity?
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Post by judy briggs on Apr 17, 2009 15:45:35 GMT -5
we were able to get off carbatrol and use lamictal and that helped both my boys with juvenile calm down and have less seizures we treat seizures with diastat. we did use the chloral hydrate to keep mitchell sedated in his last weeks of life but he had no seizures he did not have any seizures in the last 4 months of his life which was a worry because of the information we read but it never happened we use melotonins and valuim at bedtime sometimes he sleeps sometimes not so he always gets a nap time hes safe in his bed and can play with his toys if hes awake and listen to music dementia will produce bouts of sleeplessness its just part of the disease
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