Sleep- Insomnia- Night Seizure Activity-Please help!

[Guest guest]

Hi,

I wanted to know if anyone on this board has found someone who specializes in

sleeping disorders or have found any success with an alternative type of

solution to sleep? We have seen two sleep specialists here in NYC with no real

solution and we feel like we are desperate to get help. Not only is Ruby not

getting a full nights sleep, but we are all affected by not getting sleep. She

takes Clonidine at night to fall asleep, and then an anti-seizure medication for

the abnormal epileptic activity at night. Not considered full seizures but

seizure activity, the belief is the activity keeps her from getting her brain to

slow down and sleep, however, the medications that we have tried have not

worked.

We have tried melatonin, valium, ambien, klonzepam, lyrica, keppra, and now are

trying lorezepam which 3 out of 7 nights will work ok, the other nights she will

be up at 3 and restless, talking, moving around, and will not fall back asleep.

We have had sleep studies while on most of these medications which have shown

the seizure activity to be highly active and not under control. The lorezepam

does not work that well but so far it is the only medication that has not

altered her personality to be drugged out or highly volatile.

I have this hope there is some specialist out there doing research or someone

who has had the same kind of situation, who has a great idea for us to try. We

are willing to travel to meet with a specialist, if it means that we will find

some answer. So far our neurologist has been trying all kinds of medications,

and his most recent idea is to do a controlled medication experiment on her in

the hospital where they give her high doses of valium and other controlled

medicine to see if anything can reduce the seizure activity over the course of a

few days.

(sounds like a very expensive and scary thing to do and I am feeling a little

skeptical that this is the only alternative for her sleep problem).

Thank you for any ideas or leads!

(Ruby-5yrs old, right hemisphere polymicrogyria)