PANDAS/Sleep

[Wilma Jenks]

I use to be able to get my child to sleep (although) restless with lamictal and some Inositol. In the last 2 months, nothing puts her to sleep. Last night up til 4am. It has been this way for 2 weeks. It seems to have started after the Azith, and Nystatin. She was taken off of that so she could be treated for Clostridia. Her OCD is severe at night. It is worse than I have ever seen. Before that, she was psychotic looking at night and engaged with imaginary friends. You could not talk to her, ever. At least now, with the OCD, I can have a converstation with her. I have tried Clonodine, 6mg of melatonin, and seroquel. The seroquel will eventually get her to sleep, but does not stop the OCD, and the seroquel makes her mean the next day and in a total confused state. Any suggestions? I have our psychiatrist and Scott Smith working with my child. This not sleepping and severe OCD at night is really tearing us into pieces. We are considering IVIG, and need to investigate more....Forgot to mention, we are now trying Rilutek. Last night was first night and it helped a bit with OCD, but made insomnia even worse.

[Phasmid]

Wilma,

if I were in your shoes, and if I was confident in the PANDAS diagnosis, and if the treating physicians were confident in the PANDAS diagnosis, and other psychiatric disorders had been properly ruled out, and if the standard psych meds were failing to address the symptoms, then there would be nothing I would need to think about before moving to IVIG.

The thing that worries me in your child's case is the failure of antibiotic therapy to reduce the symptoms. Hopefully your child's docs have looked into the various metabolic disorders that can present with psychiatric symptoms. At this point, if I were you, I would be admitting this child into the hospital as soon as possible for observation, testing and inpatient care. She may certainly have PANDAS, but your child sounds like she may have other things going on. I would want her admitted so that she gets proper treatment and so she can be observed.

Edited February 24, 2011 by Phasmid

[Wilma Jenks]

Yup. I am calling doctors today.

[kimballot]

I use to be able to get my child to sleep (although) restless with lamictal and some Inositol. In the last 2 months, nothing puts her to sleep. Last night up til 4am. It has been this way for 2 weeks. It seems to have started after the Azith, and Nystatin. She was taken off of that so she could be treated for Clostridia. Her OCD is severe at night. It is worse than I have ever seen. Before that, she was psychotic looking at night and engaged with imaginary friends. You could not talk to her, ever. At least now, with the OCD, I can have a converstation with her. I have tried Clonodine, 6mg of melatonin, and seroquel. The seroquel will eventually get her to sleep, but does not stop the OCD, and the seroquel makes her mean the next day and in a total confused state. Any suggestions? I have our psychiatrist and Scott Smith working with my child. This not sleepping and severe OCD at night is really tearing us into pieces. We are considering IVIG, and need to investigate more....Forgot to mention, we are now trying Rilutek. Last night was first night and it helped a bit with OCD, but made insomnia even worse.

 

I am wondering if you have ever tried 5htp or valerian root. You could ask Scott Smith about those

[PhillyPA]

Have you tried steroids? How was her reaction?

 

My son did really well on steroids. Steroids make him sleep really well. Steroids make my son relaxed and calm. After his first round of steroids (month long taper) in March 2010, he never had sleeping problems/night wakings again.

 

Ironically, if you give my son valium, he will be up all night.

Edited February 24, 2011 by PhillyPA

[Wilma Jenks]

Scott Smith is hesitant to try steroids because so many things activate her. And steroids have that tendency.