Re: For those of you with PANDAS kids-QUESTION

November 2, 2009

Hi Judy, I have no idea about " numbers " with test results. Do you know what

type treatment is done for Lyme?

Only thought re strep is that strep can be ANYwhere in the body, don't need a

sore throat, can have it elsewhere.

Hope someone with PANDAS and titer knowledge can comment!

>

> Hi,

> Most of you know I have a child(age 8) that was recently diagnosed with

Chronic late stage lyme disease.He had the sudden onset of bad thought ocd and

now also has Tourettes. We have also questioned PANDAS in the past. Well, I just

had a series of extensive bloodwork

November 2, 2009

Hi

Thanks for responding.

My son is on two antibiotics, long term ,for the lyme.

Hugs

judy

November 2, 2009

Hi Judy - ok, so I know a decent amount about PANDAS, but not about Lyme. So I

can only guess at the odds of comorbid illness. I'd guess it is possible - not

likely - but possible. And given the extreme challenges, I think you are right

to explore both possibilities. Also, I don't think any of the Lyme literature

talks about TS symptoms, while the PANDAS literature definitely does.

So here are some general thoughts:

* It matters what antibiotic you are on - and the dosage matters as well.

Most people seem to be having success with Pen, Azithromyacin, or Augmentin.

Sometimes the initial dose needs to be quite high for a slightly longer period

of time. May I ask what 2 antibiotics you are on now? Since your doctor is

already on board with treating the Lyme with abx, then perhaps you can just have

a conversation with him about the possibility of PANDAS, and do a change in

perscription? I can assure you that the wrong anti-biotic will not help PANDAS.

* One of the tests for PANDAS is 5 days of Steroids. If the behavior

changes dramatically, that gives you another clinical clue. There is also a

test that can be run by a lab in Oklahoma, by a researcher called Cunninham.

Email me, Colleen or if you'd like that information. It is normally about

$200, but I know she will waive this if needed. Also, you need to submit the

bloodwork quickly, as the lab is closing on Nov 12th, until next year.

* There are PANDAS children, who need more intense medical intervention,

especially if it has been untreated for some time (how long has it been since

the first sudden onset?) I know that is cost prohibitive sometimes, but some

parents have been able to get this covered by insurance. It might actually help

you to have Lyme as well. There is a Neurologist in Baltimore that treats

PANDAS, and I believe she will also work on Lyme. Or she will consult with your

Lyme doctor. Would this be of interest to you?

Would it be ok with you if I post this on another forum & ask about your titer

numbers there? Keep in mind, that the important clinical signs are: onset,

pattern of remission, presence of strep if this can be documented, reaction to

treatment. Children often (but not always) also have urinary changes

(bedwetting, or needing to pee frequently), seperation anxiety or sensory

issues. Best - in NC

>

> Hi,

> Most of you know I have a child(age 8) that was recently diagnosed with

Chronic late stage lyme disease.He had the sudden onset of bad thought ocd and

now also has Tourettes. We have also questioned PANDAS in the past. Well, I just

had a series of extensive bloodwork done on my son. The lab showed he has a

streptozyme titer of 1:600, and it said he was positive for strep. My son has

had no sore throat for months.It also showed a DNase -B Antibody titer of 960.

> Would you think he has both Lyme and PANDAS.???? Does anyone know about these

tests?

>

> He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor on

top of it all.

> The last time his pediatrician did a strep test it was negative. His behavior

is no better on the antibiotics this time around.

> I'm doubly confused now.

>

> Thanks so much

> Judy

>

November 2, 2009

Hi, Judy. Should, or are the antibiotics also supposed to help with the

PANDAS/high titre count?

I'm glad you are getting some answers. Even if they aren't particularly good,

you at least know what you are dealing with now and can try to fashion a plan to

improve things. You've suffered so long with your son. I hope you can finally

get things turned around or have some improvement.

Hugs,

BJ

>

> Hi

> Thanks for responding.

> My son is on two antibiotics, long term ,for the lyme.

> Hugs

> judy

>

November 3, 2009

I was wondering what those of you with the PANDAS are doing about the H1N1

vaccine. Our doctor has the thimerosal free and the regular. I was a

little concerned because the nasal thimerosal free has the live vaccine vs.

the killed vaccine. Any thoughts or info on this and our PANDA problem?

From:

[mailto: ] On Behalf Of susangalway

Sent: Monday, November 02, 2009 9:03 AM

To:

Subject: Re: For those of you with PANDAS kids-QUESTION

Hi Judy - ok, so I know a decent amount about PANDAS, but not about Lyme. So

I can only guess at the odds of comorbid illness. I'd guess it is possible -

not likely - but possible. And given the extreme challenges, I think you are

right to explore both possibilities. Also, I don't think any of the Lyme

literature talks about TS symptoms, while the PANDAS literature definitely

does.

So here are some general thoughts:

* It matters what antibiotic you are on - and the dosage matters as well.

Most people seem to be having success with Pen, Azithromyacin, or Augmentin.

Sometimes the initial dose needs to be quite high for a slightly longer

period of time. May I ask what 2 antibiotics you are on now? Since your

doctor is already on board with treating the Lyme with abx, then perhaps you

can just have a conversation with him about the possibility of PANDAS, and

do a change in perscription? I can assure you that the wrong anti-biotic

will not help PANDAS.

* One of the tests for PANDAS is 5 days of Steroids. If the behavior changes

dramatically, that gives you another clinical clue. There is also a test

that can be run by a lab in Oklahoma, by a researcher called Cunninham.

Email me, Colleen or if you'd like that information. It is normally

about $200, but I know she will waive this if needed. Also, you need to

submit the bloodwork quickly, as the lab is closing on Nov 12th, until next

year.

* There are PANDAS children, who need more intense medical intervention,

especially if it has been untreated for some time (how long has it been

since the first sudden onset?) I know that is cost prohibitive sometimes,

but some parents have been able to get this covered by insurance. It might

actually help you to have Lyme as well. There is a Neurologist in Baltimore

that treats PANDAS, and I believe she will also work on Lyme. Or she will

consult with your Lyme doctor. Would this be of interest to you?

Would it be ok with you if I post this on another forum & ask about your

titer numbers there? Keep in mind, that the important clinical signs are:

onset, pattern of remission, presence of strep if this can be documented,

reaction to treatment. Children often (but not always) also have urinary

changes (bedwetting, or needing to pee frequently), seperation anxiety or

sensory issues. Best - in NC

>

> Hi,

> Most of you know I have a child(age 8) that was recently diagnosed with

Chronic late stage lyme disease.He had the sudden onset of bad thought ocd

and now also has Tourettes. We have also questioned PANDAS in the past.

Well, I just had a series of extensive bloodwork done on my son. The lab

showed he has a streptozyme titer of 1:600, and it said he was positive for

strep. My son has had no sore throat for months.It also showed a DNase -B

Antibody titer of 960.

> Would you think he has both Lyme and PANDAS.???? Does anyone know about

these tests?

>

> He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor

on top of it all.

> The last time his pediatrician did a strep test it was negative. His

behavior is no better on the antibiotics this time around.

> I'm doubly confused now.

>

> Thanks so much

> Judy

>

November 3, 2009

We don't even have the vaccine around here, and the schools are swamped with

H1N1. I am just waiting for my kids to get it.There are colds , regular flu's

and stomach bugs all around the schools here, as well as the H1N1 and I'm

panicking.

I was only able to get my son the regular flu vaccine, but they wouldn't even

give that to my other kids, so they had nothing.

Hugs

Judy

November 3, 2009

This is a very controversial question in the PANDAS community. I am voting

" yes " , but I think this is a personal decision, depending on underlying illness

and reco by doctor. If you want to read more than you will ever want to know

, you can go on Latitudes, under the PANDAS forum & click on any of the H1N1

posts.

>

> I was wondering what those of you with the PANDAS are doing about the H1N1

> vaccine. Our doctor has the thimerosal free and the regular. I was a

> little concerned because the nasal thimerosal free has the live vaccine vs.

> the killed vaccine. Any thoughts or info on this and our PANDA problem?

>

November 4, 2009

Judy,

Both of those strep titers are very high and possibly indicate he has had strep

for a long time. The Anti-DNase B should be less than 170, so 960 is very high.

The streptozyme should be less than 100 and your son's is 600.

ONLY the first episode with PANDAS must be strep. Every other episode can be

caused by any type of strep (not just strep A), other bacterias, and viruses.

In my opinion, your son definitly meets PANDAS criteria and now has the labs to

back you up. It seems like you are constantly being told by your physicians

that it is not PANDAS when everything I have ever read that you have posted,

screams PANDAS.

What antibiotic, what dose, and for how long is he on it? This is extremely

important b/c when someone has had strep for a long time untreated, they cannot

just be on a " regular " course of antibiotics. You have to literally knock out

the strep.

Your son is dealing with not only strep in his body right now, but also Lyme's,

which just makes the PANDAS worse b/c it is a bacteria.

I would also recommend that you do the blood work with Dr. Madeleine Cunningham

and can give you more info if you like.

Bottom line is making sure he is on the right antibiotic and dose.

Colleen

>

> Hi,

> Most of you know I have a child(age 8) that was recently diagnosed with

Chronic late stage lyme disease.He had the sudden onset of bad thought ocd and

now also has Tourettes. We have also questioned PANDAS in the past. Well, I just

had a series of extensive bloodwork done on my son. The lab showed he has a

streptozyme titer of 1:600, and it said he was positive for strep. My son has

had no sore throat for months.It also showed a DNase -B Antibody titer of 960.

> Would you think he has both Lyme and PANDAS.???? Does anyone know about these

tests?

>

> He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor on

top of it all.

> The last time his pediatrician did a strep test it was negative. His behavior

is no better on the antibiotics this time around.

> I'm doubly confused now.

>

> Thanks so much

> Judy

>

November 4, 2009

Judy,

I would apply for SSI for your son. Have you tried this? If approved, it would

give you some extra money to pay for all of these medical expenses. Louis

should know more about this.

in WA

Subject: Re: For those of you with PANDAS kids-QUESTION

To:

Date: Wednesday, November 4, 2009, 10:30 AM