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...

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.)

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!

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

I'm wondering if anyone has experience dealing with severe sleep disorders, and has found any relief from them. My nine year-old son has had night terrors since the age of 2 or 3. He was diagnosed with Tourettes at the age of 5. He has also been diagnosed with a generalized anxiety disorder, while also showing signs of inattentiveness, and depression. The night terrors used to occur about 5 times per week, but during the past year they've been constant. He usually wakes up screaming every night, sometimes many times per night. The resulting lack of deep, restorative sleep has really increased his other symptoms. The horrible images that he sees in his sleep also make him afraid to be alone -- he panics if someone is not with him during the night. He receives cognitive behavioral therapy to teach him to relax and sleep on his own, but it hasn't made a difference. We've tried melatonin and Natural Calm. A month ago, we started him on Clonidine. It seems to help the night terrors, but he still wakes up during the night in a panic, and has begun to have intense early morning nightmares, which are a side-effect of Clonidine. (Nightmares are different than night terrors and occur during a different stage of sleep, I believe.) I plan to discontinue the Clonidine after I've discussed it with my son's doctor. She mentioned trying Klonopin next, but what I've read about this drug frightens me to no end. Instead, I plan to try a food elimination diet to see if it helps. I really feel like a good night's sleep would make my son's other symptoms very manageable. In the meantime, we're both very, very tired!