Neurop suggested meds for sleep - Mothering Forums

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#1 of 13 Old 12-01-2009, 11:05 PM - Thread Starter
 
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Hoping someone has some experience with this. I am feeling really confused right now. DS has a dx of anxiety and Tourette's, and today his neuro confirmed ADHD. He has a sleep disorder that has been suggested as being confusional arousals, night terrors, or simply "parasomnia".

Basically he loathes sleep and getting him to get to sleep and stay asleep is hard. He takes a long time to relax to go to sleep, often wakes prematurely, and has some night of freqeunt waking/ screaming/ saying odd things.

After years of trying alternatives (melatonin, weighted blanket, eliminating dyes and dairy- a food that gives him other troubles as well- and recently theraputic brushing) we went for meds. Tenex worked well for sleep at first, he even.... took naps!... but made him lethargic and irritable. Then, it just quit working. The irritability stayed, but his ability to get at least 9 hours of sleep is gone. He is 6 y/o and could really use the 10 hours of more, but most nights gets 7-8. We try for bed at 8, but he gets to sleep by 9 or 930. He's up at 5, or 530 most days. About every other week or so he has nights of nightmarish crying, screaming, etc. This can last for hours. He gets about 5 hours of sleep on those nights.

It could be worse, he could be working on 5 or 6 hours of sleep daily, but even the 7-8 for him is bad. He gets "tired" = hyper, aggitated, teary, ticcing a ton.

His neuro today suggested some meds and gave me literature to review. I feel sick having to decide this. I know some of these drugs are controversial, but really do help children with dx's like bipolar, etc. I just don't know if we are there yet... if the risk is worth the benefit.

The literature he gave me is on Trazodone, Remeron, Geodon, and Ambien. He also mentioned Risperdal.

My initial reaction is no way. But there is a small part of me that wonders if getting appropriate sleep will help him be a happier little guy. Some days he is miserable. His tics harder when tired (a neck jerking tic) and it causes him physical pain, and when tired emotionally he is all over the map.

Does anyone have experience with any of these meds they can share?
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#2 of 13 Old 12-01-2009, 11:13 PM
 
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Have they done a sleep study on him to see if there is an underlying cause for his sleep issues?

If not I would talk to your Ped about this.
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#3 of 13 Old 12-01-2009, 11:50 PM - Thread Starter
 
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He had a sleep study done last year. It found he comes to a lighter stage of sleep more often than most, but not enough to be considered abnormal. The MD that ordered the study (at a slep apnea clinic, we have been bounced around trying to put pieces together) did say if this continues we can try another study, so I am thinking that might be needed.

Ds sees a specialist at a movement disorder clinic experienced with kids with sleep issues as well. When first discussing Tenex, the neuro explained many kids he sees with TS also have sleep issues, and he has experience with rx'ing meds for sleep. I will definately talk to our pedi clinic about this (we go to a local children's hospital and ds does not see 1 doctor for pedi care, but does see this neuro specifically) but I am thinking they will defer to him as a specialist in this area (?).
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#4 of 13 Old 12-02-2009, 12:50 AM
 
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I have done Trazodone, and Ambien and kiddos and Dh have tried Risperdal.

I dont really like they trazadone, I love the ambien. And we pulled kiddos and Dh off
risperdal. I wasnt helping much. and it is more for aggression.

My kids that melatonin doesnt work on take Clonidine and we have used it for 6 years. Works like magic. We have had zero problems, and getting the rest they need has abled them to make huge progress!

*~Kelly~*
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#5 of 13 Old 12-03-2009, 01:01 AM
 
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It really is tough to find yourself considering serious medications, especially if you normally choose a "natural" and healthy lifestyle. But we did have to look into meds for our son, and the main reason was what you mentioned---sleep. It just didn't seem at all healthy for Gabe to be getting by on what fractured sleep he was getting (he'd fall asleep OK, but wake up around 2 am and be up for the day, maybe catching a quick nap at 5 am). Because he also had some self-injurious behaviors, and was so wrapped up in his own world that he didn't seem capable of connecting with other people, we tried Risperdal. His pedi psychiatrist recommended it.

Gabe's been on it for about 2 1/2 years, and it's really worked well. His sleep is sounder (he'll still fall asleep easily, and he'll usually sleep a solid 8-9 before he wakes up), his self-injurious behaviors have lessened to the point where he can be re-directed through most of them, and he's taken an incredible interest in people, finally. We have not seen the very serious side effects that we were warned could possibly happen, and we haven't seen the less-concerning, although still serious, side effect of weight gain.

Your son's issues may warrant a different med; I just wanted to give you a little feedback on our experience with Risperdal. I still question, on a regular basis, what kind of long-term effects a med like this might have on my son, but after we weighed all of the pros and cons, I think we're doing the right thing. It's still tough, though.

I hope you can find something that works. Sleep deprivation is a truly horrible thing.

Joni and kids, incl. Gabe , 10, cutie with Down syn. and autism, and Michaela , 13, young lady with a funky spinal cord and scoliosis
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#6 of 13 Old 12-03-2009, 11:57 AM
 
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My grandson is 4 and has autism. he didnt sleep for three years lol ( it sure felt as tho he didnt) The Dr. put him on clonidine one tenth of a milligram. It really worked for him. He had night terrors and slep maybe 4 to 5 hrs a night. Lots of times he would wake up at 2 or 3 am stay up several hours and then go back to sleep a few hours it was exhausting for all of us. Im sure it wouldnt work for everyone but is worth a shot to ask Dr about. Good luck Ians Mamaw
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#7 of 13 Old 12-03-2009, 02:31 PM
 
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I'd like to third Clonidine. My son who has ASD has been taking it for 9 years now due to never sleeping. It works great and has very little side effects. The negative thing I've heard is that when you wean from it, you have to do it very slowly so your body adjusts, but I'm sure that's true for most meds.

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#8 of 13 Old 12-06-2009, 11:11 AM
 
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Unfortunately I have a lot of experience with many of these meds. (well my 8 year old does anyway)

Have you tried Benadryl? Very benign compared to the rx meds and worth a shot before you try the big guns.

A combo of risperdal and melatonin works awesome for my child. But then again, she does fine on just melatonin when we are discussing JUST sleep issues. It took years to get that way though.

I second (third? fourth?) the clonidine. If the benadryl doesn't work, this is the med I would try next.

Kim
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#9 of 13 Old 12-06-2009, 11:17 PM - Thread Starter
 
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You guys confirmed what I was thinking... clonidine! I work with a little boy who's Mom works as a case manager, and she mentioned that she sees a lot of kids on this med for sleep.

When broaching the subect of new medications last week with the neuro I asked about this and he said it wouldn't work. That since it was in the same class as Tenex, and since Tenex wasn't working anymore, he didn't even see a point in trying clonidine.

I am going to push to try clonidine before trying anything else. He might end up needing a medication for mood as well, but maybe getting more sleep will enable him to control mood issues without the help of a med.

I did try benadryl once in the middle of an 8 hour long crying/dazed/trance-like fit (in the middle of the night, lasted until morning) and it didn't help. I figured he was just one of those kids that has the opposite reaction to it, but that was over a year ago. Trying it again would probably be a good idea!

MommyKelly- do you take the ambien for just getting to sleep (as opposed to staying aslep, rising early, or parasomnia)? I was really suprised the doctor even recommended this, knowing ds's parasomnia. I read all of the reactions people have had to this med... cleaning while sleeping... driving while sleeping! (not that ds is gonna reach for the keys, lol) and geez. As if ds's isn't up at night enough doing and saying strange things. Have you experienced any one this? Probably not since you said it ha helped you, but I thought I'd ask.

Thanks ladies for the ideas and for sharing your stories about your kiddos. It does help to feel less alone!
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#10 of 13 Old 12-07-2009, 11:12 PM
 
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Quote:
Originally Posted by glorio View Post

MommyKelly- do you take the ambien for just getting to sleep (as opposed to staying aslep, rising early, or parasomnia)? I was really suprised the doctor even recommended this, knowing ds's parasomnia. I read all of the reactions people have had to this med... cleaning while sleeping... driving while sleeping! (not that ds is gonna reach for the keys, lol) and geez. As if ds's isn't up at night enough doing and saying strange things. Have you experienced any one this? Probably not since you said it ha helped you, but I thought I'd ask.

Thanks ladies for the ideas and for sharing your stories about your kiddos. It does help to feel less alone!
I could only hope to clean while I slept! LOL I have no problem falling asleep, I cant stay asleep due to panic attacks and night terrors sometimes.
I have never had an odd reaction to the ambien.

*~Kelly~*
 Waldorf Mom to 9 blessings ~6 by birth and 3 by fost/adopt~

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#11 of 13 Old 12-08-2009, 01:18 AM
 
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Clonidine didn't work for DD1. We were going to try other meds (I was on a massive waiting list for a new doc ) but then somehow she started sleeping again. I'm not holding my breath that it will last.

There is no way to happiness, happiness is the way.
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#12 of 13 Old 12-08-2009, 01:49 PM
 
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So, Ambien. A wonderful drug, but could interact with other drugs to produce the hallucinations or even more dramatic effects. I'm not sure how it works with pediatric patients, because you have to be ready to go to sleep when you take it. If you give it to him and he's actively fighting sleep, the odds of a wacky response are much greater. And if he's on anything for the anxiety or ADHD, he is also at a greater risk of hallucinations and other side effects if the Ambien is mixed in.

We had to do a sleep study for DD a while ago, and what I learned from that is that different doctors read the results in different ways, and there is a lot of discrepency in what constitutes a problem. It seems hard to get good information from a sleep study with a pediatric patient; more, IMHO, of a way for the hospitals to cover their butts before recommending other things.

I agree with you that sleep is a high priority, and getting good quality sleep is a reason to consider strong drugs. Behaviors can change so much once a child is getting enough quality rest. Good luck!
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#13 of 13 Old 12-17-2009, 03:11 PM - Thread Starter
 
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Quote:
Originally Posted by 3girlmom View Post
We had to do a sleep study for DD a while ago, and what I learned from that is that different doctors read the results in different ways, and there is a lot of discrepency in what constitutes a problem. It seems hard to get good information from a sleep study with a pediatric patient; more, IMHO, of a way for the hospitals to cover their butts before recommending other things
I didn't know this... I wonder if the neuro took a look at it if he would see anything else? I will ask him his opinion on this.

I still haven't decided what to do. I am leaning towards really pushing for clonidine even though he doesn't think it will help since Tenex quit helping. Or asking about Klonopin. In reading about parasomnias I keep coming across info that says some off-label uses for Klonopin are for parasominas and anxiety. This sounds like a good option for ds. Then I read the side effects and adverse reactions and feel like this

It's an emotional day. He had another night of waking several times, for several hours. In his sleep he was thrashing and then inches from my head he was pounding on his pillow and crying. Eyes closed, totally asleep, but losing it. I am sleep deprived and grumpy, he is at school and probably feeling similarly- and he has a school play tonight that is going to delay his bedtime. He is already nervous about it, I can't imagine how lack of sleep is going to make him feel.

Don't know particularly why I am posting this, other than a need to get it out. I talked to my Mom, but there is not much she can say.... she hears it pretty frequently. Thanks for listening!
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