Re: Re: prophlatic antibiotics for PANDAS

[Guest guest]

I know there is a blood test to check for antibodies to strep. it is the ASO

titer and Anti Dnase B. With PANDAS they increase with increase of symptoms.

The NIMH has done trials with 250mg penicillin 2x day but the results didn't

prove that prevented strep. although i think i remember reading about a 15%

group that it did improve depression and anxiety symptoms. There is also a

theory that the initial infection to cause OCD in PANDAS is strep but then

any antibodies to bacteria and viruses may cause it thereafter.I ask because

i am thinking about asking the pedi to put her on it prophalacticly [sp?]

erica

[Guest guest]

Grace, Lyme disease also has SOME of the symptoms that your daughter

experiences. Has she been tested for that? in Southeastern PA

nmlinnen wrote: Hi a,

Does your daughter stay on the antibiotic, or does she take it with

sore throat symptoms? I just read a recent article that says strep A

(implicated in OCD) does not present with swollen glands or discharge

so often is not cultured. I don't remember if PANDAS usually refers

to strep B.

My daughter has had recurring sore throats(among other " somatic "

symptoms) that were never cultured for those reasons, until one

incident with sore throat and delusions, which did not detect strep,

but maybe they did not do the 3 day culture. This article stated too,

that the untreated effects of strep A can build up leading to OCD

symptoms over time, so it is best to treat at the first incidence of

possible strep A (which would seem to mean you would have to have a

suspicion of predisposition to OCD in the child-maybe mild OCD or

other anxiety symptoms?). I don't have the link, someone posted it at

the pickaderms e-list, which I visit b/c my daughter with

OCD/BDD has skin picking.

She just today complained of aching cramping legs, after a hiatus in

those symptoms, and tonight had a relapse of BDD after nearly 4 good

weeks.(Suddenly decided she would not leave the car unless I took her

home to change clothes, panic attack, is refusing to go to school

tomorrow) and too, she has been off her antibiotic for nearly two

weeks (minocyclin for acne- however she does not really have acne,

just a spot or two which she exacerbates with picking), since she did

not tell me she had run out, and I did not go to refill the

prescription quickly. I started to wonder in Nov.if the antibiotic

had a beneficial side effect on her physical symptoms (constant

fatigue, sore muscles and joints, mild sore throats, headaches,

extreme exhaustion with exertion) when she started doing so much

better (we had just had a 1st appt with a new therapist, but no ERP

homework yet) and thus helped her OCD too. I know it is all very

speculative, since she has not been cultured for strep A, and she is

not taking an antibiotic for OCD, but for " acne " .

I wonder if there can be other auto immune conditions that act like

strep A (exacerbating OCD)since lupus, fibromyalgia and colitis are

in my family (she was tested for lupus last year, but it can be

difficult to diagnose) and those persons also seem to be afflicted

with anxiety disorders.

Grace

> Is anyone out there on prophlatic antibiotics for PANDAS? My

daughter

> Kendall is doing remarkably well 9 weeks post Strep and severe,

acute

> exacerbations of OCD. I want to protect her health and keep her

this way.

> We're almost back to " normal " WHAT BLISS...erica cronin

>

>

>

[Guest guest]

PANDAS has been linked to Strep A. Of course, that doesn't necessarily mean

that something else couldn't cause it but no one has discovered it yet.

Judy

Re: Re: prophlatic antibiotics for PANDAS

Grace, Lyme disease also has SOME of the symptoms that your daughter

experiences. Has she been tested for that? in Southeastern PA

nmlinnen wrote: Hi a,

Does your daughter stay on the antibiotic, or does she take it with

sore throat symptoms? I just read a recent article that says strep A

(implicated in OCD) does not present with swollen glands or discharge

so often is not cultured. I don't remember if PANDAS usually refers

to strep B.

My daughter has had recurring sore throats(among other " somatic "

symptoms) that were never cultured for those reasons, until one

incident with sore throat and delusions, which did not detect strep,

but maybe they did not do the 3 day culture. This article stated too,

that the untreated effects of strep A can build up leading to OCD

symptoms over time, so it is best to treat at the first incidence of

possible strep A (which would seem to mean you would have to have a

suspicion of predisposition to OCD in the child-maybe mild OCD or

other anxiety symptoms?). I don't have the link, someone posted it at

the pickaderms e-list, which I visit b/c my daughter with

OCD/BDD has skin picking.

She just today complained of aching cramping legs, after a hiatus in

those symptoms, and tonight had a relapse of BDD after nearly 4 good

weeks.(Suddenly decided she would not leave the car unless I took her

home to change clothes, panic attack, is refusing to go to school

tomorrow) and too, she has been off her antibiotic for nearly two

weeks (minocyclin for acne- however she does not really have acne,

just a spot or two which she exacerbates with picking), since she did

not tell me she had run out, and I did not go to refill the

prescription quickly. I started to wonder in Nov.if the antibiotic

had a beneficial side effect on her physical symptoms (constant

fatigue, sore muscles and joints, mild sore throats, headaches,

extreme exhaustion with exertion) when she started doing so much

better (we had just had a 1st appt with a new therapist, but no ERP

homework yet) and thus helped her OCD too. I know it is all very

speculative, since she has not been cultured for strep A, and she is

not taking an antibiotic for OCD, but for " acne " .

I wonder if there can be other auto immune conditions that act like

strep A (exacerbating OCD)since lupus, fibromyalgia and colitis are

in my family (she was tested for lupus last year, but it can be

difficult to diagnose) and those persons also seem to be afflicted

with anxiety disorders.

Grace

> Is anyone out there on prophlatic antibiotics for PANDAS? My

daughter

> Kendall is doing remarkably well 9 weeks post Strep and severe,

acute

> exacerbations of OCD. I want to protect her health and keep her

this way.

> We're almost back to " normal " WHAT BLISS...erica cronin

>

>

>

[Guest guest]

Dear Grace,

While I wouldn't want to discount your daughter's symptoms at all, I

would consider the possibility that she is experiencing the hypochondria that

is pretty common with OCD. I know that Annie has constant headaches,

stomachaches (or just " a gooshy feeling in her stomach " ), leg aches, sore

fingers, sore throats, etc. I think they are usually just the normal bodily

sensations that most of us can just ignore, but to her ever nerve is

magnified. Her heart beating can keep her awake for hours if she thinks it is

too fast or too slow. A twinge is a scary big thing to her - to me it's just

a weird pain for whatever reason. When she is distracted or happy, they go

away. When her OCD is flaring up she has every illness imaginable. That is

often the first thing I notice - sudden complaints about all kinds of

physical symptoms. As her OCD is better controlled, so are her physical

complaints.

Of course to HER these sensations are real, and I don't doubt that

she is occasionally feeling really bad, but they are usually pschosomatic.

Which is much harder to deal with than the flu!! With her we have a " visual

vomit " rule (we have to SEE her vomit before she can stay home from school -

worrying about feeling nauseated doesn't cut it) and she has to have a fever

or a clearly inflamed throat to stay home as well. (Unless I decide she

deserves a mental health day, but they we make that clear to her).

Just something to keep in mind.

Good luck, and have a peaceful, lovely holiday.