Seizure medications and not sleeping...

[D L and K's Mom]

My DS is 21 but is at the developmental age of an 18 month old..no language, diapers etc. He has seizures (Grand Mal, Catatonic and Drop). He is now on Banzel, Lamictal and Topamax for the seizures. We have tried lots of others and lots of different "mixes" and these seem to work well. He also takes Rozerem and Ambien to help him sleep. We have used Melatonin in the past but that didnt work. Well, he doesnt sleep. We have called the Dr and told him that DS is up all night making happy noises and running laps around the house. The Dr told us to up the Ambien....nope, he sleeps for an hour and then is up the rest of the night. We were told to give him one of the Clonazepam wafers he takes when he has a Grand Mal. The Dr said that will make him sleepy and he will sleep through the night. Nope. We were told to try 2...nope. Weve tried natural supplements and Benydryl nothing seems to work. I dont like giving him any more meds than he needs but this is horrible. He sleeps about 2 hours a night if that. I am going crazy. DH travels quite a bit and it is me who is home alone quite a bit. Last week Wed night he slept 2 hours...Thurs he never slept...just was on the go all night. Fri he fell asleep for 1 and 1/2 hours and Sat we were lucky and it was 2 1/2. If we put him in his room he gets out of bed and keeps us all up. If we keep him down stairs in the dark, no TV, no talking etc he likes to bang his feel and run laps around the house. There is no way to quiet him down. Imagine a 6 foot tall 18 month old babbling loudly, giggling and laughing. Dont get me wrong he is a doll, he giggles and laughs and claps his hands..but at 3am after not sleeping for days it gets very frustrating!!!!!I have called both our Ped and our Nerologist and they both just keep adding meds. I have asked if this could be an ongoing seizure...but have been told no. Ive called and been in tears. We have tried to tire him out but we just seem to get a cranky wide awake kid...weve taken him for car rides etc...nothing. Anyone on any of these meds and have the same type of problem? I am ready to switch Drs but it is very hard to find somene to see DS with all his special issues. The Drs we have are fantastic in every other way but thye just seem to be taking the sleeping issues to lightly. We try to switch off but it really doesnt matter because you can hear him all through the house...hes so happy!! This used to happen every once and awhile but it would last for a week or so and then he would crash and things would be back to normal...He had a Grand Mal seizure 1 month ago and had to go to the hospital becuase he was having trouble breathing and we could not stop the seizure. The not sleeping started again right after that. I swear it is just an ongoing seizure of sometype but was told no. Hes just "on" 24 hours a day...

 

[peemagg]

Have you tried putting a TV in his room, where he can watch the pictures (or maybe a electric picture frame), but no sound as long as he stays in bed? Maybe tape several of his favorite cartoons that could get you 6+ hours of watching for him, without the sound.

With the picture frame you could put it on slide show and he could lay there and watch it and maybe he would accidently fall asleep.

 

[SueM in MN]

First

My DD occasionally has trouble sleeping, but she is not mobile, so all we get is knocking on the wall. And, if someone comes in, she will usually be quiet. She understands well, so we can reason with her, but she sometimes just wants someone with her. I can’t imagine what you are going thru, so send lots of pixie dust.

I would suggest checking with the Pharmacist to see if your DS may be having some strange reaction to one of the medications or if any of them may be interacting in a weird way. Also, there have been reports of Ambien causing some strange reactions in a few people (usually soon after starting the medication). One of the reactions is a kind of sleepwalking where the person is sleeping, but is acting as if they are awake; there have been cases of people walking around and even driving while fast asleep. They appear to be awake and even converse with people.

Since this is not about WDW, I am going to move it to the disABILITIES Community Board, where it will be more on topic and hopefully will get more replies.

 

[LockShockBarrel]

I actually get the reaction Sue is talking about with Ambien. It's rare for me but it does happen. Apparently I "wake up", go about my business having fully conscious conversations and whatnot, end up back in bed and then wake up with no memory of whatever I've done. It's stupid stuff too, I'll take out clothes for the next day, or put a movie in the dvd player or grab a book. Then when I really wake up I'll find a book I don't remember in my bed or I'll turn on the dvd player and find it's not the movie I'm expecting. I also take the max dose of Ambien.

Anyway I agree with Sue, you may want to explore a possible medication interaction or paradoxical reaction. You may end up needing to play with doses or one by one elimatinate things to see if something is the culprit (obviously with doctor's ok) I really can't imagine what you're going through, or even what your son is going through. I feel like hammered doodoo if I don't sleep. Another thought that's coming to mind...does he act like he doesn't feel well at all? If I don't sleep and I've taken an Ambien (which I take every night) I get very sick to my stomach, could it be that he's feeling ill in addition to not sleeping?

 

[D L and K's Mom]

Thanks for moving this! He does have a TV and we have tried shows that usually calm him (he has others that he loves to dance and move to) it has not worked. We usually wait until he starts to settle and we walk him up to his room and he lays down, we put up the baby gate, turn on the monitor and hes out for the night.....that was before. Now, he bangs and bangs, gets up and stamps by the gate. He has now even started to climb over the gate (hes about 6 feet). The part about the sleep walking makes me think perhaps he is sleep walking in his own odd way. He has had a complete check up becasue I insisted and the Dr DS has is always pretty good about listening when we say, "something is wrong but we dont know what". I am going to video tape DS and bring it with me ...he is wired and I want them to see it. I somehow fell its like constant seizure activity. Thanks for all the kind words....

 

[SueM in MN]

Videotape is a good idea. I have a feeling that they really are not understanding the extent of the problem.

I would still talk with the Pharmacist too about the medications. Most people just think of them as measuring out the medication, following the doctor’s prescription. But most Pharmacists know more about the medications than doctors do because medication is the field they studied. We have Pharmacists with Doctor degrees (call Pharm D) in the hospital who studied as long as the MDs, just studied medications that whole time.

 

[LockShockBarrel]

There's gotta be something to it. Could there be like..a hormone or something that's being effected? Like maybe there's something with adrenaline causing all that energy? I'd bet they'll eventually want to do something like a sleep study with an EEG to see if they can find something going on when this happens.