New to PANDAS PLEASE Advise us!

[sleeplessinVA]

On my phone, so I'll keep it short. It's the right treatment, IMO, or at least a good start. If you've started the steroids, though, I think it will make you ineligible for the NIH study, so if you're seriously going to look into that study hold off on the steroids. Also, we got approval from our childs psychiatrist before starting the steroids that dr b in ct had prescribed for my son...they can cause rages and other problems in kids who don't have pandas, but instead have other mental health disorders not due to inflammation (such as true bipolar).

[sleeplessinVA]

OK, He has had ONE steroid pill so far. We were planning to start the two pill/day dose today. Is it too late to hold off or can I stop right now?

[sleeplessinVA]

We got the okay to hold off on the steroids so I guess that it's just wait and see. When the bloodwork comes back, what will I be looking for?

[tpotter]

We got the okay to hold off on the steroids so I guess that it's just wait and see. When the bloodwork comes back, what will I be looking for?

 

 

I would suggest you call NIH first thing Monday morning. They will do all the bloodwork and more. They pay for everything, including your travel. You can't do better than the study. Even if your child gets the placebo, you can opt to get treated with the real stuff shortly afterwards. Cal, call, call (I wish I had had that option.)

[DeterminedMomVA]

Hi SleeplessinVA,

 

I just wanted to check in and see how you and your DS were doing? Is he improving at all on the antibiotics?

 

I also wanted to make sure that you knew that a lot of us see very positive effects from giving ibuprofen as an anti-inflammatory. I did that with my DS while we waited for our first appt. with a PANDAS doc, and we did start to see him improve with that, even before we started ABX and did a steroid taper. My DS10 is still taking 200mg twice a day, along with the Augmentin that Dr. B prescribed.

 

If you are unable to get into NIH, or don't want to pursue that option, and you are willing to travel, you might want to make an appt. with Dr. B in CT (who takes some insurance, unlike Dr. L). I think you could get an appointment before August (don't know for sure, though), so you could get expert help sooner than August.

 

Hang in there,

 

DeterminedMom