Has Anyone Overcome Sleep Problems?

[kat]

A helpful forum member suggested I post about my son's sleep issues here in the PANDAS forum. My 8 year old was diagnosed with TS when he was 5. His main "side" issues are anxiety, mild depression, lack of focus, and, most relevant to this post, horrible nightmares and nighttime panic attacks which have him up throughout the night. On bad nights, he wakes up in terror (but lucid) up to six times per night. Usually, it's just once or twice.

 

The nightmares began by the time he was three. They've waxed and waned until last year, when they became a nightly occurrence. As you might expect, the poor kid is always exhaused, and his anxiety/depression/ADD symptoms are worsened by the lack of deep sleep.

 

We've seen a behavioral pychologist for over a year, to learn self-soothing techniques. We then saw a psychiatrist, who subscribed Clonidine, then Klonopin, neither of which made any difference. Haven't had luck with melatonin, either, though it does help him get to sleep initially.

 

We're starting on a Gluten/Casein free diet shortly, and I plan to have a sleep study performed, as well as PANDAS testing. (To my recollection, my son has never been diagnosed with a strep infection, although his older brother had them constantly -- it makes me wonder whether he's been frequently infected without my notice.)

 

Now for the questions: Have any of you experienced similar a sleep disorder with your PANDAS child? If so, have you had any success in dealing with it?

 

Kat

[Suzan]

A helpful forum member suggested I post about my son's sleep issues here in the PANDAS forum. My 8 year old was diagnosed with TS when he was 5. His main "side" issues are anxiety, mild depression, lack of focus, and, most relevant to this post, horrible nightmares and nighttime panic attacks which have him up throughout the night. On bad nights, he wakes up in terror (but lucid) up to six times per night. Usually, it's just once or twice.

 

The nightmares began by the time he was three. They've waxed and waned until last year, when they became a nightly occurrence. As you might expect, the poor kid is always exhaused, and his anxiety/depression/ADD symptoms are worsened by the lack of deep sleep.

 

We've seen a behavioral pychologist for over a year, to learn self-soothing techniques. We then saw a psychiatrist, who subscribed Clonidine, then Klonopin, neither of which made any difference. Haven't had luck with melatonin, either, though it does help him get to sleep initially.

 

We're starting on a Gluten/Casein free diet shortly, and I plan to have a sleep study performed, as well as PANDAS testing. (To my recollection, my son has never been diagnosed with a strep infection, although his older brother had them constantly -- it makes me wonder whether he's been frequently infected without my notice.)

 

Now for the questions: Have any of you experienced similar a sleep disorder with your PANDAS child? If so, have you had any success in dealing with it?

 

Kat

 

We have had lifetime problems with sleep and are in a really good spot right now. I use melatonin every night to help calm anxiety and go to sleep. The extended release might help with not waking up, have you tried that?

 

I co-slept with my kids for years to help them go back to sleep when they woke up. We used sensory heavy pressure which helped (heavy weighted blankets, etc.).

 

Supplements that help calm, epsom salt baths before going to bed and magnesium supplements or oils.

 

Her sleep also got much better after tonsils and adenoids were removed and we are on a gluten free diet as well. She wet the bed until she was 7 too and once we got that under control, the sleep was better. I think the gluten free diet helped our sleep issues too. We did not have the terrors that you describe but we did have anxiety and fear and inability to get back to sleep.

 

HUGS!

 

susan

[peglem]

We haven't had night terrors but, almost a lifetime of sleep problems. Mostly under control now with bedtime supplements: melatonin (gets her to sleep, doesn't keep her sleeping- with just melatonin she wakes up EXACTLY 4 hours after dosing), valerian root (stinky stuff- you probably can't use it if your child doesn't swallow capsules), magnesium, ibuprofen. She almost always sleeps through the night with that...but if she's in a PANDAS episode she wets the bed in the middle of the night and doesn't go back to sleep for several hours after that.

 

I've heard lots of people use benedril. For my daughter, it does eventually make her sleep well, but 1st we get at least an hour of hellish ragey meltdown.

[dcmom]

Hi Kat- I feel for you, sleep problems are tough on the parents. It is hard enough to be patient, etc during the day- but you need some quiet time at night to recharge.

 

My dd has pandas, and has had some minor sleep issues. We used benadryl a few times and it helped. I know someone posted that it may eventually stop working, or that he may eventually not get the deep sleep necessary- but- sometimes if you break a pattern it can help. I am wondering (if benadryl will work for him) if you could try it for a week, and then stop and see if breaking the pattern was helpful?

 

Have you considered pandas for your son? I don't know much about TS, but all of the symptoms you describe in your post could be pandas. Just a thought...

[KeithandElizabeth]

Hi Kat:

 

My son had severe night issues. He had problems going to sleep, staying asleep, waking at 4:00 am for the day and he had intense night hallucinations that kept him up for at least an hour in the middle of the night. Melatonin did help with going to sleep, but not staying asleep. About 3 weeks after his IVIG treatment, my son start sleeping longer and stopped waking up in the middle of the night. The hallucinations also ended! It was an up and down process though. I think other people may have had similar success with high dose antibiotics.

 

My thoughts are with you because the sleep deprivation is so hard on the WHOLE family!!!

 

Elizabeth

[kat]

Great advice, Suzan -- thanks! I just ran out to buy the time-released version of Melatonin. It would be great not to spend most of the night sleeping in a kid-sized bunk bed!

[kat]

Thank you! I'm so glad to hear you've found some relief for your daughter.

 

My son also wakes exactly 4 hours after the melatonin. I'll try out the valerian root/ibuprofen. (He already takes magnesium, and Benadryl makes him hyper, unfortunately.)

[kat]

I never thought my son fit the PANDAS profile, but I'm rethinking things lately. In addition to what I've already mentioned, he's had a history of G.I. problems -- constipation one minute, diarrhea the next. The next step is to figure out how and where to have him tested, I guess!

 

Thank you!

 

 

Hi Kat- I feel for you, sleep problems are tough on the parents. It is hard enough to be patient, etc during the day- but you need some quiet time at night to recharge.

 

My dd has pandas, and has had some minor sleep issues. We used benadryl a few times and it helped. I know someone posted that it may eventually stop working, or that he may eventually not get the deep sleep necessary- but- sometimes if you break a pattern it can help. I am wondering (if benadryl will work for him) if you could try it for a week, and then stop and see if breaking the pattern was helpful?

 

Have you considered pandas for your son? I don't know much about TS, but all of the symptoms you describe in your post could be pandas. Just a thought...

[FallingApart]

We haven't slept in a year. But when things are at their worst we get about 4 - 6 hours/day. We have done all the things mentioned here but also added one more. Our doc feels that GABA helps keep children asleep. So melatonin to put them to sleep and GABA to keep them asleep. WHen DD is in an exacerbation we cannot use Benadryl. If she is healthy, we will sometimes use both Benadryl and Melatonin. Like I said, we haven't slept in a year and are pretty desparate. In the last 12 months we have only been healthy for less than 60 days (both IVIG times)

 

I posted a question like this just prior to our PEX and I do feel that the GABA addition might be what made the difference for us. Good luck to you. I hate waking up for the day so early. One day we woke up at 12:45 FOR THE DAY!!!

[peglem]

valerian root stimulates GABA release. I think that's why it works. I've recommended it to several adults with sleep problems (not because of their kids, like our sleep problems!) and so many are thrilled with it. I haven't tried it myself- I easily drop off as soon as the kiddos are asleep.