PANDAS

[Guest guest]

Dear All,

We just received a blood test results of my son and we found

out that his ASO TITER was 393. This blood test was done 1 ½ month

ago, after a sudden and dramatic onset of very severe OCD, where he

was " frozen " at home for a few days. His OCD continues to be severe.

Furthermore my son 's presents the following signs and

symptoms:

Presence of tics and hyperactivity (psychiatrists have suggested

that he has the Triad of Tics/ADD/OCD).

Involuntary and irregular movements of his face and arms (chin and

arms trembles)

Irritability, temper tantrums and mood liability: dramatic increase

in teasing and fighting with brother, aggression towards self (used

knife to threatened stabbing self, choking self) and unusual

roughness with pets (cats) and younger sister

Age regression: wetting the bed, sucking his thumb

Separation anxiety: very clingy, wanting to sleep with parents,

worried when we leave room or go to out.

Nighttime difficulties: mentioned above

New bedtime fears and nightmares: minimal nightmares and sleeps well

(10 hours), sometimes wakes at 4 am to use bathroom

Everything started when, at the end of November, 2005, when he had a

sudden fear of food poisoning, he started showing very strange

behaviors around the house; not wanting to step onto lines or

carpets or under doorways, not wanting to go through imaginary lines

between points (creating a portal), needing to return from a place

the same way he went, many things did not feel right, clothes,

shoes, towels, sheets. His principle fears are that he will go into

a different dimension; or go back in time, and that something bad

will happen to us, his parents. His compulsions are repetitions, not

stepping onto the rugs, lines etc, sweeping his feet to

clean " stains " . In just few days we went from strange behaviors, to

being " frozen " and not be able to do anything; his feet seemed glued

to the floor, in a " safe " spot he chose in the house.

According to his pediatric records, had Strep throat 2 years

ago. Now retrospectively we realized that at the time some of his

behaviors were OCD but we did not realized because not only we did

not know anything about OCD but also as it appears in a couple of

weeks was gone. Equally when we was 4 years old we remember he was

very ill when we moved to Mexico City and weeks later his teacher

told us that after a higyne class he was cleaning his hands

compulsively. Again this was during a couple of weeks and it went

away so we never gave it any importance. Now in this sudden onset he

was not ill with strep throat recently and although the ASO Titer

blood work indicated high levels, as stated before, his throat

culture for strep came out negative. However I had step throat which

he could have passed to me and his was with not symtomps.

For the 6 weeks he has been taking Prozac and Klonopin. He started

on Prozac with 10 mg increasing to 20 and 30, increasing 10 mg each

week, and now staying on 30 mg for the last four weeks. He started

with Klonopin .25 mg morning and evening. During the crisis we went

to three .25 mg Klonopin and currently he is only on one .25 mg in

the morning, continuing with the 30 mg Prozac. He also has been

going to CBT-ERP therapy with Doctor Hoffman and Dr.

Spielman for the last six weeks. He started the first month with

intensive therapy, every day, five times a week for 1 ½ hour. Now we

are currently reduced to three days of which two of them are 1 ½

hour and the other is 3/4 hour. Furthermore, we have changed our

dynamics and communication in the family so we do not create

codependence and reward negative behavior, i.e. we have started a

reward system using a goals chart and use praise and positive

discipline, following the guidelines of the psychologists.

After all these efforts, is not frozen anymore but he still

is in scale of 1 to 10, as said by his Psychiatrist, Dr.

Cremer, in a very severe case of OCD between 7 and 8. His obsessions

and rituals have changed, and his tics have dramatically increased

and they are dozens of them.

We have seen a video tape where and Wayne Goodman

presented PANDAS at the OCD Foundation's annual meeting in 1997 and

we are very interested in knowing more about PANDAS.

Any one out there that their kid has been identified as PANDA?

What treatment are you following? Is to be PANDA something positive

because you can control more the OCD disorder or is negative because

the antibodies responsible can also been damaging other helthy

organs structures?

We are looking forward to your comments.

With gratitude,

Cybele