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Re: To Eileen: PANDAS

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Eileen, I would treat the symtpoms, not the numbers. My daughter's titers are

within the normal range. However, the therapist said that since we never tested

her before she was symptomatic, we don't know what's " normal " for her. She has

responded well to the antibiotics in the past. Her symptoms are starting to

flare up again in the past few weeks so we are going to put her back on the

antibiotics. I didn't bother getting a strep test or a titer test this time

around, we're going straight to the antibiotics. My daughter is allergic to the

penicillin class of drugs so she takes 1 tsp. of arythromyecin daily (she's 4).

Last year, she was on that dose for about a month or 6 weeks and then went down

to half a dose for another 3 months before we stopped them altogether. We'll

start again tomorrow.

If your daughter is symptomatic, try the antibiotics regardless of what her

titers are. It will either work or not and then you'll know.

Good luck.

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thanks Jill - i think the doc means if she has no strep symptoms she

doesn't want to treat the titer numbers but I will call Fri and

mention what you've said - of course dd's symptoms have improved a bit

- I think the structure of school may have helped but the rituals are

still long and out of control at home so maybe I'll just request a

month of antibiotics - though we are starting ERP now so maybe I

should wait?? any thoughts??

thanks so much

eileen

Quoting Jill Schreibman <jillschreibman@...>:

> Eileen, I would treat the symtpoms, not the numbers. My daughter's

> titers are within the normal range. However, the therapist said

> that since we never tested her before she was symptomatic, we don't

> know what's " normal " for her. She has responded well to the

> antibiotics in the past. Her symptoms are starting to flare up

> again in the past few weeks so we are going to put her back on the

> antibiotics. I didn't bother getting a strep test or a titer test

> this time around, we're going straight to the antibiotics. My

> daughter is allergic to the penicillin class of drugs so she takes 1

> tsp. of arythromyecin daily (she's 4). Last year, she was on that

> dose for about a month or 6 weeks and then went down to half a dose

> for another 3 months before we stopped them altogether. We'll start

> again tomorrow.

> If your daughter is symptomatic, try the antibiotics regardless of

> what her titers are. It will either work or not and then you'll

> know.

> Good luck.

>

>

> ---------------------------------

> Want to start your own business? Learn how on Small Business.

>

>

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Eileen,

I think it's a two pronged approach- antibiotics and ERP. ERP will help her

learn how to challenge her OCD thoughts and to manage the ensuing behaviors.

The antibiotics will quiet the viral storm that's going on in her body so that

her system is not so overwhelmed.

My daughter hasn't tested positive for strep and hasn't had elevated titers

but she has been exposed to so many viruses in the past few weeks that they have

taken their toll. I've asked Dr. Geller on this site and my daughter's

psychiatrist and the consensus seems to be that because PANDAS is a relatively

new phenomenon, no one can answer my many questions too definitively. I had

posted last month asking the list and Dr. Geller if there is a cumulative effect

to multiple exposures to viruses, not just strep, and he said no one really

knows. Now that we're into the thick of winter (even though it's pretty mild

here in NY) I can state pretty emphatically for my daughter there definitely has

been a cumulative effect which has resulted in many of the OCD behaviors we saw

last winter. We started the antibiotics last night and I'm hoping she'll

regroup within the next few days. Her pediatrician said it might be a seasonal

thing for and she'll have to go on

antibiotics for the late fall/winter months. Things that we dismissed last

year as fatigue, crankiness, pickiness or her strong will (she's 4) we now

understand are the ways (with about a dozen other) that her OCD manifests. Last

night she started with a facial tic that I haven't seen since last year so I'm

very glad we started the Erythromyecin again. When I gave it to her last night,

she actually seemed relieved. I think she knows it helps her and she is in great

need of relief.

Good luck to you. Let me know how it goes.

Jill

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thanks again Jill - we're in NY too! can't complain about the weather

huh??? I could get used to this!

eileen

hope it helps - keep us posted please

Quoting Jill Schreibman <jillschreibman@...>:

> Eileen,

> I think it's a two pronged approach- antibiotics and ERP. ERP

> will help her learn how to challenge her OCD thoughts and to manage

> the ensuing behaviors. The antibiotics will quiet the viral storm

> that's going on in her body so that her system is not so overwhelmed.

> My daughter hasn't tested positive for strep and hasn't had

> elevated titers but she has been exposed to so many viruses in the

> past few weeks that they have taken their toll. I've asked Dr.

> Geller on this site and my daughter's psychiatrist and the consensus

> seems to be that because PANDAS is a relatively new phenomenon, no

> one can answer my many questions too definitively. I had posted

> last month asking the list and Dr. Geller if there is a cumulative

> effect to multiple exposures to viruses, not just strep, and he said

> no one really knows. Now that we're into the thick of winter (even

> though it's pretty mild here in NY) I can state pretty emphatically

> for my daughter there definitely has been a cumulative effect which

> has resulted in many of the OCD behaviors we saw last winter. We

> started the antibiotics last night and I'm hoping she'll regroup

> within the next few days. Her pediatrician said it might be a

> seasonal thing for and she'll have to go on

> antibiotics for the late fall/winter months. Things that we

> dismissed last year as fatigue, crankiness, pickiness or her strong

> will (she's 4) we now understand are the ways (with about a dozen

> other) that her OCD manifests. Last night she started with a facial

> tic that I haven't seen since last year so I'm very glad we started

> the Erythromyecin again. When I gave it to her last night, she

> actually seemed relieved. I think she knows it helps her and she is

> in great need of relief.

> Good luck to you. Let me know how it goes.

> Jill

>

>

> ---------------------------------

> TV dinner still cooling?

> Check out " Tonight's Picks " on TV.

>

>

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