Re: Pediatrics Journal PANDAS article

[Guest guest]

Wow! I totally respect the information collected and reported in this

article. However, I have to admit, I totally believe in the PANDAS theory for

my

son. If you met and got to know him right now, you wouldn't even notice any OCD

type symptoms. We say he seems " OCD free. " If that's possible. He hasn't

had strep throat in over 8 months. However, if you had met him last summer,

after another strep infection, there is no doubt you couldn't have ignored the

torment he was going through. I can literally give you the day it began. It

was an overnight change. One night I put him to bed as an average happy boy

and the next morning he wakes up tormented. My happy Garrett was gone for days,

months...... Absolute torture to watch and witness. Absolute torture for

him!!! He had blood work that showed his strep titers were off the charts.

[Guest guest]

You're in really a tough spot, trying to decide about your son's tonsils. I

think that if I were in your shoes, I'd have his tonsils removed. Just the

chance that you might avoid more PANDAS episodes would be pretty motivating for

me! You'd also avoid many more rounds of antibiotic use, which has it's own

risks (my daughter's ear infections eventually became resistant to three

different

antibiotics from having to take them so often in her first three years).

Obviously surgery is a huge step, but a tonsilectomy vs. PANDAS ?? I don't know

-

remembering my child's sudden onset of OCD is scary enough that I'd probably

remove her tonsils myself if I thought we'd have to go through something like

that again!!!! (just kidding - really!)

To get really good answers, I'd contact someone at NIMH doing PANDAS

research. Try sending e-mail to someone there and just ask whether removing

tonsils might prevent further PANDAS episodes. It can't hurt! Ask whether they

can

at least give you a name of someone who could answer your question. You could

also ask an Ear/Nose/Throat doctor about the strep part of it, although whether

he/she would know much about PANDAS is questionable.

Let us know what you learned and decided! You've come up with a great

question!

in NV

[Guest guest]

I agree with you. I was leaning towards the idea of a tonsillectomy, but

after receiving the most recent message from Tracey, I am so hesitant. It's all

so scary! I certainly don't want to purposely send him into another PANDAS

episode by having the tonsils removed.

I have taken your advice and emailed NIMH. I'm waiting for a reply. I'm

hoping they can help me.

Thanks everyone for all of the advice and support.

Corinna

[Guest guest]

Hi Corinna, doctors are also confused about what the proper treatment should

be. My understanding is the only treatment for high titers are the

blood-filtering procedures being evaluated for PANDAS. But since this

involves hospitalization, some medical risk, and is considered

investigational in PANDAS, I'm not surprised your ped didn't offer this. I

was told the only real reason to get titers is to " prove " for the record

that they are elevated at the same point in time that the child's OCD or TS

suddenly skyrockets--to strengthen the diagnosis of PANDAS. After awhile my

daughter no longer wanted to cooperate with blood draws just to satisfy

everyone's curiosity!

I believe the only way currently to access these treatments is to have your

child enrolled in one of the PANDAS studies that are investigating PEX or

IVIG. I'm no longer up on the studies or which ones are recruiting

participants, but the NIMH should be able to provide info for you.

Getting older has helped my child, she has apparently not had a strep

infection in almost three years. Earlier when she did have a strep

infection and a sudden worsening, an increase in her SSRI and/or the

addition of a small dose of a second SSRI helped to control and reduce her

symptoms. She hasn't had a strep exacerbation since she started therapy,

but I imagine intensified CBT/ERP would also help.

It will be nice once all the studies are done to everyone's satisfaction,

and the best and effective treatment for these elevated titers that cause

our children such misery is known with certainty. However the pace of

research is so slow that I am not counting on its providing practical

benefit for my child--maybe for my grandkids :-/

Take care,

Kathy R. in Indiana

----- Original Message -----

> Good point Kathy! From our point of view, parents of kids we believe have

> PANDAS, it's hard to believe this theory is still in question, isn't it??

I

> have to agree that these type of reports probably do affect the way

doctors treat

> or handle patients. In fact, the last time my son had a severe episode of

> OCD, his pediatrician did a strep throat culture that turned out negative.

She

> sent us out for some blood tests to check his strep tithers. As expected,

his

> antibodies were sky rocketing, but she didn't do anything about it. Is

that

> normal? She said it was too late to prescribe antibiodics because the

throat

> culture had come back negative. We just had to go home and wait it out.

From

> the research I've read, I'm really confused about what the proper

treatment

> should be.

>

> Corinna in TX