PANDAS and sleep help!

amother

Mon, Oct 19 2020, 11:07 pm

My pediatrician believes my child has PANDAS we will be going for testing. He has many signs including sudden onset of Anxiety/ OCD, separation anxiety, impulsive behavior... we are on our way to receiving the help he needs. But for the time being how did I get my child to sleep? He never gets tired and if I put him to sleep he jumps all around the room and literally fights anyone trying to help him. When I send him to let out his energy he just never finishes. Any tips please?! He has a hard time getting up for school and I need my night back at least.

FranticFrummie

Mon, Oct 19 2020, 11:12 pm

1mg Melatonin! 1/2 hour before bedtime, so he'll be sleepy enough to go in without a fight. You are not "drugging" your child, you are filling in the gap of what is supposed to be there in the first place.

Your body is supposed to make it's own melatonin, but if PANDAS disrupts hormone production, then his body is not making the melatonin he needs in order to sleep. That's why you supplement.

amother

Mon, Oct 19 2020, 11:24 pm

amother [ Brown ] wrote:

Consistent magnesium and epsom footsoaks. Gaba, l theanine, ashwahganda, melatonin, 5 htp

Thanks! R some of those typos? And do u find kids get addicted to the melatonin? Like they will always rely on it?
Also wondering if you are talking from experience because I tried melatonin one night and found it worse I was thinking maybe it’s the sugar my son used to be out cold by 715 and now on a good night it’s 930 I really hope to get back to his usual bedtime

amother

Honeydew

Mon, Oct 19 2020, 11:31 pm

I don't find it addicting, my child is up all night without it. It's takes some trial and error to figure out the dosage. I know people who give 0.5mg, my child needs 4mg. Each is different. Maybe discuss with your pediatrician

amother

Beige

Tue, Oct 20 2020, 12:15 am

When my child was diagnosed with pandas we were going crazy from bedtime, the doctor said give him melatonin. I was petrified to do it. But it was a life savor during those really hard times. It’s months later and Bh I don’t haveto give it anymore and he didn’t become addicted. I tried here and there not to give every night. Ask your doctor about the melatonin and how much to give or your health food store. I think we have melechew ... it

amother

Tue, Oct 20 2020, 12:19 am

amother [ Beige ] wrote:

Thanks so good to hear. Right now it feels like no end in sight. I know it wasn’t the topic of my question but we were just introduced to this diagnosis last week can I ask how your child is doing now and how long until u saw improvement?

amother

Brown

Tue, Oct 20 2020, 9:43 am

amother [ OP ] wrote:

no typos.
I don’t think it’s addictive but kids may need it for a long time. When we started, 1/6th of a mg did the trick, now 3 years later we give 1/4mg. It’s a lifesaver. I regret struggling for 1.5 years and not giving because it’s “controversial”. Too high a dose can have a paradoxical effect, I know when I tried HD melatonin for covid I was up all night.

amother

Tue, Oct 20 2020, 8:17 pm

Thank you all so much bedtime tonight was like a dream! He tried his usual behavior but then sat down on my lap and told me he was tired and was sleeping by 740! I haven’t had that in weeks

amother

Bronze

Tue, Oct 20 2020, 8:49 pm

I have torture with my son at bedtime. Some ppl on this site thought it was pandas based on my posts. I brought it up to my doctor today and she said it probably isn't since he sleep nicely in my room but not his.
What made you think it's pandas??

amother

Tue, Oct 20 2020, 9:12 pm

There was also a more sudden switch in behavior not just a sleep issue- anxiety, impulsive- he hits and kicks. Again I’m not positive it’s pandas we took him for a blood test yesterday so it think results will be in tomorrow we will see iyh

amother

Brown

Tue, Oct 20 2020, 9:13 pm

amother [ Bronze ] wrote:

the fact that he sleeps well in your room certainly doesn’t rule it out. What else does he have going on?

amother

Brown

Tue, Oct 20 2020, 9:14 pm

amother [ OP ] wrote:

bloodwork is great and often full of clues but just so you know, pandas is currently a clinical diagnosis.

amother

Firebrick

Tue, Oct 20 2020, 9:21 pm

Hi, I am thinking my child might have PANDAS also, what workup did your Dr. recommend to get a clear diagnosis?

amother

Tue, Oct 20 2020, 10:00 pm

Not sure exactly what each is but prescription says ASO titers and CBC with diff, SMAC TSH I brought him into a psychologist as well and hoping to get to the bottom of it he’s sweet as sugar kah and he’s rlly having a hard time I feel so bad

amother

Brown

Tue, Oct 20 2020, 10:03 pm

amother [ Firebrick ] wrote:

Hi, I am thinking my child might have PANDAS also, what workup did your Dr. recommend to get a clear diagnosis?

diagnosis is based on presentation alone. That’s why you need an experienced provider

amother

Brunette

Mon, Nov 09 2020, 3:18 pm

Bumping this up as struggling with this too now.

Op did bloodwork show anything? We did a workup today.

amother

Mon, Nov 09 2020, 4:03 pm

Yes op here bloodwork did show high numbers so my child was put on strep medication for the time being although we haven’t seen a major change started therapy too