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

[Guest guest]

HI Colleen,

My son is on Zithromax 500mg a day for 5 months and Rifampin 300mg a day for 5

months.He has been on these for one month so far with no change in his ocd or

tics , actually his adhd  and his mood is a million times worse.

I would appreciate any info

thanks so much!

Hugs

judy

________________________________

To:

Sent: Wed, November 4, 2009 10:30:15 AM

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

 

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

>

>

[Guest guest]

Hi Judy,

The only other things I can think of is trying a steriod burst (if you haven't

already).  It can calm down the PANDAS and " bring your child back " .  Dr. K uses

a steriod burst as a kind of PANDAS test - if the child does better on it, it

reinforces the idea that it is PANDAS.  Also, I found my daughter still had a

lot of problems with the antibiotics until I got her on regular probiotics to

counter the yeast that can develop.  She drinks a cup of kefir every day, and

also takes Yum-Yum dophilus by Jarrow Formulas.  I'm sure there are many good

brands.  I give her her antibiotics in the morning and the kefir in the

afternoon so they don't undo each other's effectiveness.  I hope you and your

son get some relief soon.

Best wishes for health and peace,

Peggy

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

Colleen

To:

Date: Wednesday, November 4, 2009, 8:42 AM

 

HI Colleen,

My son is on Zithromax 500mg a day for 5 months and Rifampin 300mg a day for 5

months.He has been on these for one month so far with no change in his ocd or

tics , actually his adhd  and his mood is a million times worse.

I would appreciate any info

thanks so much!

Hugs

judy

____________ _________ _________ __

From: colleen <dicesare@embarqmail .com>

To: @ yahoogroups. com

Sent: Wed, November 4, 2009 10:30:15 AM

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

 

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

>

>

[Guest guest]

Hi Peggy,

My son was on prednisone three times for severe posion ivy and there was no

improvement in his behavior.( or what the doc thought was poison ivy!!)

I give my son 4 billion units of probiotics a day, because he had C-difficle in

the past. I have heard of kefir, but don't know where to purchase it. I have

also heard you can make your own?

Thanks so much for sharing!

Hugs

Judy

________________________________

To:

Sent: Wed, November 4, 2009 2:19:20 PM

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

Colleen

 

Hi Judy,

The only other things I can think of is trying a steriod burst (if you haven't

already).  It can calm down the PANDAS and " bring your child back " .  Dr. K

uses a steriod burst as a kind of PANDAS test - if the child does better on it,

it reinforces the idea that it is PANDAS.  Also, I found my daughter still had

a lot of problems with the antibiotics until I got her on regular probiotics to

counter the yeast that can develop.  She drinks a cup of kefir every day, and

also takes Yum-Yum dophilus by Jarrow Formulas.  I'm sure there are many good

brands.  I give her her antibiotics in the morning and the kefir in the

afternoon so they don't undo each other's effectiveness.  I hope you and your

son get some relief soon.

Best wishes for health and peace,

Peggy

From: jchabot <jchabotsnet (DOT) net>

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

Colleen

To: @ yahoogroups. com

Date: Wednesday, November 4, 2009, 8:42 AM

 

HI Colleen,

My son is on Zithromax 500mg a day for 5 months and Rifampin 300mg a day for 5

months.He has been on these for one month so far with no change in his ocd or

tics , actually his adhd  and his mood is a million times worse.

I would appreciate any info

thanks so much!

Hugs

judy

____________ _________ _________ __

From: colleen <dicesare@embarqmai l .com>

To: @ yahoogroups. com

Sent: Wed, November 4, 2009 10:30:15 AM

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

 

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

>

>

[Guest guest]

Hi Judy,

Here in Northern California, I can find Kefir in Whole Foods and Safeway grocery

stores, near the yogurt.  It comes in a bottle - it's a pretty thick drink.  I

know some parents have had success making their own.  I'm not sure how

different it is from  " regular " yogurt, I just noticed an improvement that

coincided with trying my dd on it, so I've just kept giving it to her.  How I

wish adequate research was being done on this disease, and that we had more

facts to work with.

Best wishes,

Peggy

From: jchabot <jchabotsnet (DOT) net>

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

Colleen

To: @ yahoogroups. com

Date: Wednesday, November 4, 2009, 8:42 AM

 

HI Colleen,

My son is on Zithromax 500mg a day for 5 months and Rifampin 300mg a day for 5

months.He has been on these for one month so far with no change in his ocd or

tics , actually his adhd  and his mood is a million times worse.

I would appreciate any info

thanks so much!

Hugs

judy

____________ _________ _________ __

From: colleen <dicesare@embarqmai l .com>

To: @ yahoogroups. com

Sent: Wed, November 4, 2009 10:30:15 AM

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

 

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

>

>