Re: Re: STREP PREVENTION for PANDAS kids

[Guest guest]

Hi Darcy, I do the things you mentioned plus regular sleep, this has always

been my daughter's vulnerability and when she's short of sleep she seems

extra susceptible to catching something, not always strep of course. This

is getting harder as she is getting older and all her friends seem obsessed

with sleepovers. Often they call here to get Kel to invite them!!

We have used garlic in our family, but I'll warn you that it makes a person

smell of garlic!

The problem is knowing for sure whether this or that is truly reducing the

number of illnesses and OCD exacerbations. (Other illnesses besides strep

also have caused my child to experience the abrupt worsenings.) As my

daughter has gotten older, she catches fewer things (due to maturing immune

system?) and this I believe has given her some stability of her symptoms.

My neighbor who works in a health-food store says since people have become

worried about the flu, they can't keep Oil of Oregano, Grapefruit Seed

Extract, some mushroom-based supplements, Olive Leaf Extract or Garlic in

stock, it sells out so fast. So I suppose you could check these out, I

haven't used them though so can't recommend one.

I have never had the nerve to make an issue of handwashing since this is

such a common OCD compulsion...

Kathy R. in Indiana

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

> Hi.

>

> After apparently having the PANDAS form of OCD starting suddenly last

spring

> and coinciding with two cases of strep in March and May, my 13 year old

son's

> symptoms have waned so much that they have virtually disappeared. That

took

> from the last case in late May until about the end of August. Of course,

now we

> are really trying to prevent any new cases of strep by giving him a good

diet,

> a multivitamin and about 350mg of Vit C daily. We have considered trying

> garlic too but haven't done that yet. Is anyone out there trying other

things to

> to beef up immunity and help your child stay healthy? I guess regular

> handwashing would be a good idea too. Ideas??

>

> Darcy

[Guest guest]

Knowing about my son's PANDAS, his teacher has been much more vigilant

about handwashing in his classroom. They have those dispensers of

liquid antibacterial soap that doesn't need water in the classroom, and

they have always washed before going to lunch. Now, he also tries to

have them wash when they enter the room.

The custodial staff also makes a point of wiping down the desktops,

chairs, tables and other surfaces which are likely to be contaminated

more thoroughly. Everyone around me also knows to let me know if their

child has strep, so we can keep an eye out for it.

The only problem is, the only way we've ever known he has actually had

strep is by the change in his blood levels---he never shows any other

typical physical symptoms. (If anything, he'll sometimes appear to

have a cold).

BTW-does anyone know anything more than I do about ASO levels.

Although his have been slowly decreasing, they appear to be abnormally

high. In July, they were 1440. They are now 1160 and may still be

dropping, so I don't know what his baseline is. Still most other

people with PANDAS kids seem to be reporting levels around 500. (His

AdB(?) is also extremely high, I just don't remember the numbers)

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

[Guest guest]

Jeanne, I think I read recently that ASO <200 was " normal. " I do not

remember the source but was surprised at the low number. My question, would

an ASO value of 200 support symptoms in a PANDAS kid, is so far unanswered.

Anyone know?

Kel is another kid who has shown no physical symptoms with a strep infection

(fever, etc.) only the abruptly worse OCD symptoms. At the initial episode

that kicked off OCD, she did have rash, but not since.

Have your son's OCD symptoms fallen in tandem with his ASOs?

I wonder if some PANDAS kids' titers ever fall to the " normal " range.

Kathy R. in Indiana

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

> Knowing about my son's PANDAS, his teacher has been much more vigilant

> about handwashing in his classroom. They have those dispensers of

> liquid antibacterial soap that doesn't need water in the classroom, and

> they have always washed before going to lunch. Now, he also tries to

> have them wash when they enter the room.

>

> The custodial staff also makes a point of wiping down the desktops,

> chairs, tables and other surfaces which are likely to be contaminated

> more thoroughly. Everyone around me also knows to let me know if their

> child has strep, so we can keep an eye out for it.

>

> The only problem is, the only way we've ever known he has actually had

> strep is by the change in his blood levels---he never shows any other

> typical physical symptoms. (If anything, he'll sometimes appear to

> have a cold).

>

> BTW-does anyone know anything more than I do about ASO levels.

> Although his have been slowly decreasing, they appear to be abnormally

> high. In July, they were 1440. They are now 1160 and may still be

> dropping, so I don't know what his baseline is. Still most other

> people with PANDAS kids seem to be reporting levels around 500. (His

> AdB(?) is also extremely high, I just don't remember the numbers)

[Guest guest]

On Saturday, January 3, 2004, at 11:07 PM, Kathy wrote:

> Jeanne, I think I read recently that ASO <200 was " normal. "   I do not

> remember the source but was surprised at the low number.  My question,

> would

> an ASO value of 200 support symptoms in a PANDAS kid, is so far

> unanswered.

> Anyone know?

>

I've actually read about this! My understanding is that combined with

symptoms (and possibly a postive culture and/or elevated AdB) this

could support a diagnosis of PANDAS. They key would be too watch the

levels and see if they drop. Conversely, I've been told that even an

ASO reading of around even 500 might not indicate PANDAS if it is

confirmed that the child simply has an above average baseline. The key

seems to be watching what the levels do. If they continue to drop,

then the initial level indicated a recent strep infection. If they

don't, then it doesn't.

>

>

> Have your son's OCD symptoms fallen in tandem with his ASOs?

He had more tic symptoms and the answer is, " maybe " They did seem to

be getting better gradually (although with over 1100 still, I would

hardly consider him to be strep <antibody> free). Then, however, he

started with the OCD stuff, so who knows what that means. He gets

another blood draw in a week. I'll be very curious to see what happens.

>

> I wonder if some PANDAS kids' titers ever fall to the " normal " range.

>

I think I understood my son's doctor to be indicating that they thought

it was possible that some didn't, but that was another thing they were

investigating. I do know that my son't extremely high level (combined

with his symptoms) was enough to pretty much indicate that something

wacky was going on with the strep.

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)