kcdc3 Posted December 20, 2009 Report Share Posted December 20, 2009 DD's doc thinks there is a strong liklihood of a sleep disorder as well as PANDAS. Has any of you tried any of the sleep disorder meds coupled with antibiotics and seen any improvement? Or have any of you tried just the sleep meds without the abx? Looking for some feedback on this theory. He noted that her Ferritin was at 20 and he would like to see it above 50. He said any level below 50 strongly suggested low brain iron, which strongly points to a sleep disorder. Link to comment Share on other sites More sharing options...
dcmom Posted December 20, 2009 Report Share Posted December 20, 2009 What type of sleeping disorder? For my dd pandas caused lots of sleeping issues: difficulty getting to sleep, difficulty staying asleep, bad dreams, waking up not rested. When the pandas went into remission, she started sleeping peacefully again. My other dd had sleep apnea caused by enlarged tonsils- went back to peaceful sleeping post T&A. Link to comment Share on other sites More sharing options...
dee45 Posted December 20, 2009 Report Share Posted December 20, 2009 Hi, during really bad periods Anthony would wake screaming I do think there is a connection. He is now on Topamax, Augmentin and a probiotic and is doing fantastic at this time. Deanna Link to comment Share on other sites More sharing options...
peglem Posted December 20, 2009 Report Share Posted December 20, 2009 What I observed with my daughter is that she is more susceptible to compulsion impulses when she is tired, and those compulsions keep her from settling down to sleep. If I can prevent her acting on them, she has a big ragey meltdown and then quickly falls asleep. But, when in full exacerbation, she will awake from a dead sleep to perform compulsions...its not fun. The only sleep aids that have worked for her are melatonin (but we do go through the rageys 1st) and valerian root. Link to comment Share on other sites More sharing options...
Worried_Dad Posted December 20, 2009 Report Share Posted December 20, 2009 Whenever in exacerbation, our son had terrible trouble getting to sleep and staying asleep. At various times, he was pulling 2-3 all-nighters per week. Early on, docs tried a bunch of things to help him sleep - valium, ambien, sonata - and if anything, they made things worse. Desyrel (along with melatonin) did seem to help for a while but lost its effectiveness. For our son, IVIG and mega-dose augmentin have been most effective at stabilizing his sleep cycle. We still do melatonin, an herbal sleep aid called somulin, and occasional Advil PM, but no prescription meds. Wish I could offer more insight here! Link to comment Share on other sites More sharing options...
kcdc3 Posted December 21, 2009 Author Report Share Posted December 21, 2009 Well, I'm not sure what you would call it, but her doc said that because of her Ferritin levels, that she has a "high liklihood" of having a "sleep disorder" - meaning that she is not necessarily having trouble getting to sleep or waking up during the night (neither of which she has trouble with), but that her brain is not actually cycling like it should during sleep and not putting her in a deep sleep wherin the brain has time to grow and develop. His theory is that partly due to this, she is waking up not rested and therefore, causing more compulsions on top of the PANDAS. He suggested Miropex or Requip - both prescription meds. Link to comment Share on other sites More sharing options...
mom md Posted December 21, 2009 Report Share Posted December 21, 2009 We saw a neuropsychiatrist who diagnosed my son with "dysomnia, possible ressless leg syndrome" . His ferritin was 24. After one year we are up to 36. We did try Mirapex and it made him MUCH worse. One week later we got the PANDAS diagnosis and he staring improving with his sleep after azithromycin. After PEX he was sleeping perfectly. Mirapex is a dopamone agonist and that is why I think the PANDAS got worse. Wiyhin 4-5 days it was clear it was making things worse. I think the dysmonia is caused by the PANDAS. I do think iron supplementation is important as iron is a building block for the neurotransmitters but replacement takes a while. Link to comment Share on other sites More sharing options...
peglem Posted December 21, 2009 Report Share Posted December 21, 2009 I think until the PANDAS is under control, its really difficult to tease out what is PANDAS and what may be co-occurring conditions. But, sometimes you just have to treat symptoms, whether PANDAS or not, because the children are so miserable if you don't. The trick is to find treatments that actually help. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted December 21, 2009 Report Share Posted December 21, 2009 My son also had a low Ferritin level and one of our doctors suggested that our son's low blood levels in this area as well as other areas was the result of "PANDAS" and the infection that his body had been fighting so long. We did use Melatonin to help him fall asleep, but it did not prevent the nightly nightmares and 4:00 am rising for the day. His sleep is much better post IVIG, although during our bumpy healing periods, he will sometimes regress in this area. Elizabeth Link to comment Share on other sites More sharing options...
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