Mary M Posted May 1, 2010 Report Share Posted May 1, 2010 The diagnostic criteria from Dr K indicates sleep issues as a component of PANDAS but does anyone know if this has to do with a change in the child's biological clock/circadian rhythm? Does anyone have a suggestion to help improve sleep? Dd has progressively extended her bed time hour this week from 10pm to 5am..in 4 days she's shifted her sleep schedule by 7 hours. Thank you in advance for any suggestions.... Link to comment Share on other sites More sharing options...
Suzan Posted May 1, 2010 Report Share Posted May 1, 2010 The diagnostic criteria from Dr K indicates sleep issues as a component of PANDAS but does anyone know if this has to do with a change in the child's biological clock/circadian rhythm? Does anyone have a suggestion to help improve sleep? Dd has progressively extended her bed time hour this week from 10pm to 5am..in 4 days she's shifted her sleep schedule by 7 hours. Thank you in advance for any suggestions.... I know melatonin is often recommended here and we take it every night. We take the 2.5 mg peppermint sublinguals. My dd's have taken it for several years and it literally saved me. Our doctors know they are on it and say it is totally safe. It helps them fall asleep but not stay asleep. Luckily that seems to be much better for us. I hear people have used a time released melatonin to help stay asleep. I know you will get some other suggestions as well. Good luck with it. I know you need your sleep and your dd does too! Susan Link to comment Share on other sites More sharing options...
kimballot Posted May 1, 2010 Report Share Posted May 1, 2010 We use melatonin. My ds is sensitive - for several years only took .75. Now he 13 and takes 1.5 most nights / 3.0 when he taking prednisone. It really helps to give him a calm feeling to fall asleep without drugging him to sleep. Link to comment Share on other sites More sharing options...
peglem Posted May 1, 2010 Report Share Posted May 1, 2010 We do melatonin here too. Also valerian root. But, during exacerbation, sleep schedule still gets messed up! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted May 1, 2010 Report Share Posted May 1, 2010 We do melatonin here too. Also valerian root. But, during exacerbation, sleep schedule still gets messed up! Ditto for us, here! Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted May 1, 2010 Report Share Posted May 1, 2010 I have so much empathy for you on this topic. Our 7 year old son was sleeping a total of 6 hours a night pre-IVIG. And he would wake up for at least 1 hour in the middle of the night with horrific hallucinations and then be up for the day at 4:00 am. So, melatonin did help with falling asleep, but it did not help with keeping our son asleep. I think this sleep issue is a symptom of the brain inflammation and hopefully, the antibiotics and the prednisone help your son. I have to say that now that our son is healing, he is sleeping 9 hours a night! So, you will get there soon. Elizabeth Link to comment Share on other sites More sharing options...
Stephanie2 Posted May 1, 2010 Report Share Posted May 1, 2010 I'm guessing the sleep problem comes from a seratonin imbalance (which I believe is caused by pandas in our cases, hence the depression/irritability), which is why melatonin helps so many of our kids (seratonin creates melatonin). Melatonin completely changed our bedtime battles. It has been a lifesaver around here. Now that my sons are on spironolactone, I'm not sure they need it anymore, but I have not tried going without it yet... Stephanie The diagnostic criteria from Dr K indicates sleep issues as a component of PANDAS but does anyone know if this has to do with a change in the child's biological clock/circadian rhythm? Does anyone have a suggestion to help improve sleep? Dd has progressively extended her bed time hour this week from 10pm to 5am..in 4 days she's shifted her sleep schedule by 7 hours. Thank you in advance for any suggestions.... Link to comment Share on other sites More sharing options...
Mary M Posted May 1, 2010 Author Report Share Posted May 1, 2010 I have so much empathy for you on this topic. Our 7 year old son was sleeping a total of 6 hours a night pre-IVIG. And he would wake up for at least 1 hour in the middle of the night with horrific hallucinations and then be up for the day at 4:00 am. So, melatonin did help with falling asleep, but it did not help with keeping our son asleep. I think this sleep issue is a symptom of the brain inflammation and hopefully, the antibiotics and the prednisone help your son. I have to say that now that our son is healing, he is sleeping 9 hours a night! So, you will get there soon. Elizabeth We are so hopeful for IVIG with Dr K after our initial visit May 26...really need that visit today but I'm glad to learn from you that sleep may return. It just seems that sleep deprivation would only makes our kids' symptoms all worse. We tried melatonin one night this week but she stayed awake so long we thought maybe it was making the insomnia worse, perhaps we'll try it some more. I would imagine it would take a few days to get any effect from the melatonin. Link to comment Share on other sites More sharing options...
kimballot Posted May 2, 2010 Report Share Posted May 2, 2010 (edited) We are so hopeful for IVIG with Dr K after our initial visit May 26...really need that visit today but I'm glad to learn from you that sleep may return. It just seems that sleep deprivation would only makes our kids' symptoms all worse. We tried melatonin one night this week but she stayed awake so long we thought maybe it was making the insomnia worse, perhaps we'll try it some more. I would imagine it would take a few days to get any effect from the melatonin. I have to say that the first time we tried melatonin it was not so great. My son seemed to have very active dreams and it was difficult to wake him up in the morning. I cut it in half - then half again to get just the right dose. One thing with melatonin is that having the lights on could make it harder for the melatonin to work. Once my son started taking melatonin I was able to talk him into turning his lights off and letting me lay down with him (that way he was not feeling so anxious about something bad happening). Over time, he got used to turning his lights off when that sleepy feeling hit. Now he (usually) reads for 20 minutes and then turns the light off himself - just a hall light on. When he is an exacerbation he asks me to lay down for a few minutes, but I can often talk him out of that. here is a website that may help http://www.talkaboutsleep.com/circadian-rh...n-correctly.htm Edited May 2, 2010 by kimballot Link to comment Share on other sites More sharing options...
Mary M Posted May 2, 2010 Author Report Share Posted May 2, 2010 here is a website that may help http://www.talkaboutsleep.com/circadian-rh...n-correctly.htm Thanks for the website. I read it all. Some much to learn. Link to comment Share on other sites More sharing options...
earnestfamily7 Posted May 2, 2010 Report Share Posted May 2, 2010 I am a big Melatonin fan - it has changes our bedtime 'time; dramatically! My DD7 takes the 2.5 orange sublingual - my ped recommended that my DS10 go up to 5mg when he is having trouble settling for the night.... I agree with everyone as far as things being worse during exasperations... for us it seems like it takes the melatonin A LOT longer to kick in (normally 20 min... during exasperation can be 1 hr + Also it does not keep my kids to sleep either. We tried the time release and it make my DD hyper... didnt settle for 2 hrs and I havent tried it again since.... I never made the connection with the seratonin/melatonin relationship.. but that makes sense Link to comment Share on other sites More sharing options...
Mary M Posted May 2, 2010 Author Report Share Posted May 2, 2010 I appreciate everyone sharing their experiences...more than anything it helps to know others are experiencing similar circumstances. Link to comment Share on other sites More sharing options...
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