ODD? Sleep problems?

[thereishope]

First, I'll say my son has never been on SSRI's so I am not speaking from first hand experience. Even when my son was bad, I just couldn't go down that route. But, there are some kids on here who do stay on a SSRI if the parent thinks it is helping. This forum isn't full force "Get your child off all psych meds asap". We just say be careful, watch dosing, and trust your instinct. I think a good amount of psychiatrists take the stance that if they don't see improvement, they up the dose, the change the med, they add another one on. But with some PANDAS kids, they may need a lower dose than the norm or it just isn't needed and it's actually an adverse reaction. As with all medical aspects of PANDAS, educate yourself, speak up to the doctor if you have concerns, and do trust that inner voice.

 

If anyone decided to take their child off a SSRI, discuss it with your doctor. Even if they want your child to stay on, it is ultimately the parent's decision and you can ask them how to wean your child off of them. Just don't stop all meds. Often, they need to be weaned.

 

 

If your child is not already on a SSRI and you are thinking of adding that in, in my personal opinion, try different antibiotics first, see if there's anything else you can try before you can go down that route. I don't judge those who have their child who is very bad off on SSRI's but I cannot advocate them either.

 

 

 

Anyone have theirs on SSRI? I am aware of the warnings, aside from additional complications with PANDAS, but if it helps???????

Edited March 21, 2010 by Vickie

[momaine]

At this poing in time, I can't imagine making my pandas child sleep alone. It kills her to be alone. The melatonin does help a lot for her and it relaxes her enough that she can usually fall asleep in half an hour or so. (sitting up on the couch with her feet touching the floor, which is the only ways he can sleep at all) If she is having a particularly difficult night (unable to stay on the couch) I sometimes tell her I'm going upstairs unless she can pull herself together. She needs me there SO badly, that is usually enough to get her to settle down. Without the melatnonin its a lot harder on her.

 

Previous to pandas, she enjoyed sleeping alone in her room for a couple of years so I know its related to pandas and not a normal part of her personality. You really can't impose the same conditions on these kids as you would if they were normal. They have inflammation in their brain that makes it difficult to filter out which thoughts are something that is worth worrying about, vs. thoughts that have no real danger.

 

Angela

[Stephanie2]

We use melatonin drops that go under the tongue. I started my 5 year old on .5 ml, I have heard that 3.0 ml is the max dose. When he is having an especially bad day with his tics, I up the melatonin to 1 ml. It has bought us hours of night time relaxation which is desperately needed around here. He used to go to sleep at 9 or 10 during exacerbation, now goes to sleep about 20 minutes after melatonin (around 7 or 7:30).

 

We had terrible sleep issues that only cropped up with pandas, also nightmares and leg cramps. And yes, oppositional behavior here too. Only during pandas...

 

We are 4/5 years into this, late diagnosis as well. Luckily I caught my 2 year old very early (first exacerbation at 18 months, I didn't even recognized that it was pandas until the neurologist suggested it. I almost fell out of my chair b/c I had just learned of my 5 year old's pandas!!!).

 

Best of luck!

Stephanie