Has anyone addressed SLEEP DISORDER?

[dut]

nancy - hi, yes my dd's cortisol levels were low through all four testing points in the day and my ds' were low in the am and raised at night. Ds also had off the lab's scale high DHEA (still can't find much on that except virilisation and hirsutism in women - he is uber boy) and both kids had low 17 OH progesterone.. again not sure what this means.

 

When researching adrenal fatigue, especially thinking of dd, many of her symptoms that we put down to PANDAS, crossover with low cortisol, so we're hoping that some of what we see may be fixable if we can better support their adrenal function. Night waking, difficulty falling asleep, night stomach pains and nausea, even anxiety,can be adrenals. Se has PAND(A?) but she has historically remitted very well with abx and steroids but not so much this time. A recent steroid burst totally got rid of the OCD we were seeing,within 24 hours of the first dose, but sleep issues and anxiety remain. Just wondering if PANDAS directly messes with the HPA axis or if the stress of it all has just shot her adrenal efficiency?

[7upMom]

My son's first symptom to come and last to leave is a huge sleep disorder. If I would pay attention I would maybe have a bit of a heads-up to the onset of PANDAS each time. My son can't get to sleep at night and can't wake up in the mornings, even for fun stuff. During the height of PANDAS it's sometimes 4 or 5 am before he can fall asleep and 2 or 3 in the afternoon before I can wake him up. And when I say wake him up that means every 15 mins shaking him, yelling at him, doing all I can.

Now that he's no longer in what I consider a full blown episode (better as of April) we still have big time sleep issues. This is the main reason he was partially home bound from school last year and I really want him back in regular classes this year. He went 4th hour last year.

I saw on the mystery diagnoses clip about Sammy how he wouldn't sleep in his bed because of a stripe on his comforter. My son will not sleep in his room at all, hasn't since onset in September. But now that he's better and can talk to me about stuff, he still won't tell me why. Just says 'it's hot' (and I'll give him that, summer on our second floor is warm) but still it's an excuse. He sleeps on the couch on the first floor.

We're in the 'do not disturb' phase of PANDAS where we are so relieved that things are going well we just don't want to mess with anything and we don't want to go to even one more doctor for fear of triggering something. Do you think a sleep doc could help? Anyone tried it?

 

This was a HUGE problem for us also, sounds just like my son's sleeping pattern. He went on clonidine for his tics though and that helps him fall asleep now at a regular time, but there is no way he will get up early. We had a sleep study done at the sleep clinic and she said this is really common for tourettes but she was not familiar ( but was open) with PANDAS. We found out from my 9 y/o sleep study that he has apnea episodes. They gave him a cpap- which worked wonders- when he would wear it- once again try explaining ocd issues and PANDAS and why he won't wear a sleep mask even though it makes him feel great in the morning. So they did t&a, he has another sleep study in 2 months as a followup. I think he will still flunk because he still falls asleep from the clonidine but once again can't get up in the morning. We are nervous about school also- thinking of maybe trying to put this in an iep ?? don't know if thats possible but worth a shot!!!