PANDAS Question - for those who have used Prednisone

October 16, 2009

Since my son has almost all of the symptoms of PANDAS (he is much like Sammy in

the book), I have been working on finding a local pediatrician willing to

consider it. Thanks to , and Mila on this board I have found one who

has never treated PANDAS but was willing to listen and called Dr. K. in Chicago.

My son has started a 5 day course of Prednisone to see if he gets better. His

first dose was yesterday. Well, after taking the pill in the morning, his mood

changed dramatically by afternoon. His usual irritation and sometimes anger over

OCD subsided. He even asked and went on an outing with us last night, although

he needed lots of reassurances. His OCD has slooowly been improving on Luvox

these past few weeks, along with his mood. However, the change yesterday in

mood was pretty dramatic. He invited his Dad to play a game with him, talked to

us happily, and today to my great relief told his brother over the phone, who is

away at college, he can come home now. In July, after they got into an argument

because my older son was studying for the MCAT and under a lot of pressure and

tired of hearing his brother rage and cry, I sent my older son to live

elsewhere. My OCD son couldn't even look at him without getting angry. It really

broke my heart, but what could I do? From there, he went to college and I've

been hoping he can come home for Thanksgiving. My question is for those who have

tried the Prednisone to test for PANDAS, is this possibly a sign it is working

and he does have PANDAS? Dr. K. said to look for improvements between days 3 and

14. I guess I'm anxious to know.

Anita

October 17, 2009

Anita,

I'm so glad to hear you've hooked up with Dr Kovacevic and that you're seeing

such hopeful changes. It's such an exciting feeling to catch a glimpse of the

child you've lost.

When we did prednisone, it took about 10 days for us to see changes we'd

consider dramatic. But everyone is different. My son was in a bad spot after

being sick for so long and he had severe tics, which tend to be more resistant.

So I think you can be hopeful that the prednisone is showing that you're dealing

with PANDAS, but I'd give it a few more days before making any proclamations

(especially to your son in college).

Some families experience a remission after Prednisone. But if your son has strep

colonized somewhere in his body, you may see symptoms return. Prednisone is a

test, not a treatment that will necessarily get rid of things on a more

permanent basis. My son had strep in his adenoids (so throat swabs were

negative). When we stopped the prednisone, we saw a backslide because the

resident strep re-started the whole thing. A few weeks later, he had a

tonsillectomy and adenoidectomy and after that, we saw a much steadier and

longer lasting improvement, because the source of the strep had been removed.

I would keep a journal for the remainder of the 5 days. Assuming the

improvements continue, Dr Kovacevic will discuss next steps. But it looks like

you have a great weekend ahead of you. Turn off your computer and go enjoy your

son!

October 17, 2009

Hi Anita - the path you are on is certainly less than simple. You'll need a

few more days to really know if he is responding to the Prednisone. However,

this was the same result that we saw. On day 1, we saw a nearly immediate

calming. By day 3, she was subclinical on OCD, and was able to use small piece

toys (building a model) without frustration, something she had not been able to

do in a year (7 year old). My husband & I were shocked. However, about 2 days

after the 5 day course of Prednisone that we saw a flooding back of the OCD. I

don't tell you this to discourage you, but so that you can be ready for this,

especially with another child to consider. Prednisone is usually not the

treatment to gain remission - it is usually used for diagnostic purposes. Take

notes everyday, even after the Prednisone, so that you can chart the prednisone

& the OCD for Dr. K.

However, if this lasts, it will give you the confidence that you have found one

side of the answer for your son, and encourage your efforts to find medical

help. I would encourage you to also use ERP therapy (Exposure & Ritual

Prevention) as many children have more than one onset. And giving them the

tools to deal with the onset is very important. Especially given your other son

- ERP therapy may be critical.

All my best - in NC

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> Since my son has almost all of the symptoms of PANDAS (he is much like Sammy

in the book), I have been working on finding a local pediatrician willing to