Son in PANDAS flare and needs sleep-Help!

[McMom]

Need some advice...my son is in another PANDAS flare and, as is typical with him, his racing thoughts and agitation from preventing him from getting sleep. Going on day 3 of only a couple hours each night. What has worked for you? We haven't found anything that helps him other than riding it out, but I'm so tired!

[MomWithOCDSon]

Valerian root a couple of hours before bedtime to chill him out a little, melatonin (a small dose will usually do -- 1 to 2 mg.) a half-hour to hour before bedtime. Lights out!

 

Good luck!

[wisdom_seeker]

We also add melatonin (0.5 - 1 mg) when DS16 has a rough time with PANS anxiety. Perhaps because we use the melatonin infrequently, he still responds well to a very small dose of melatonin, sublingual: 0.5 -- or even 0.25mg, but I would not hesitate to use 1-3 mg if my kiddo was still not sleeping after a smaller dose. Just beware that getting up the next day may be hard. But -- as you know -- sleep is what your kid needs, so he'll need to catch up

 

FWIW, DS16 has also been on a small stable dose of trazodone ( 1/2 of a 50mg tablet) each evening, for at least 4 years. This helps him fall asleep and stay asleep. Trazodone is an old medicine, a quadricyclic antidepressant that is frequently used as a sleep aid for kids -- and it's been a life-saver for my kid with obstructive sleep apnea, who used to wake every few minutes from phase I/II sleep.

 

Before the trazodone he felt like he never really got into good sleep. With trazodone he still had sleep apnea, but he got to deeper sleep, was less likely to wake completely from each episode of hypopnea (mostly closed off airway, but not completely stopped). And as a result he didn't feel like he spent most of the night awake. It's made a big difference in his quality of life.

 

I bring this up because I think that the small dose of trazodone also keeps PANS from wreaking havoc on DS's sleep, so he doesn't need the melatonin as often.

 

Find a helpful doctor, and don't hesitate to use multiple meds together if one doesn't quite do it for your son. Sleep is so important, for your kiddo and yourself as well.

 

Tapering:

The body tries to compensate for any meds that cause sleepiness, increasing the internal drive to stay awake. How do we handle that? we do melatonin for > 3 days, we then taper the dose slowly over a few more days, which prevents a night or two of rebound wakefulness.

[McMom]

Thank you for the advice! Wisdom _ seeker it's interesting that you mentioned Trazadone because my niece has been ailing with an autoimmune disorder after a mycoplasma pneumonia infection for almost 2 years. She takes it because her painful muscles and joints keep her up at night. I never thought to ask my son's psychiatrist about it. The doctor prescribed Clonidine which seems to have no effect. I like the more "natural" suggestions too. Will definitely try them. Again, thank you both.