Pandas

[Guest guest]

My son's PANDAS ws confirmed through a strep antibody blood test, plus he had

lots of tics over the years, after every bout of tonsillitis.  He had many high

fevers with hallucinations also.  PANDAS was pretty unheard of back then (this

was around 2002/2003), so there were very few drs who had heard of it.  We were

referred to an ENT by a psychiatrist who saw the signs.  So it was confirmed by

2 drs.  My son had a tonsillectomy/adenoidectomy and the ENT said that he had

never seen such badly damaged tonsils.  They were actually like chunks of

concrete (which explains why my poor son had so much trouble swallowing).

 

Anyway, after the surgery, our alternative dr flushed my son's liver (of the

anesthesia), and put him on Protrypsin to try to kill of the strep antibodies. 

We are not sure of the damage that was done to his Basal Ganglia, but he does

still struggle with dyslexia/dysgraphia and anxiety.  The tics disappeared along

with the constants strep infections and high fevers.

 

Y.

Re: copper-toxicity

Hi,

I believe there is an important relationship between levels of zinc and

copper...like they

need to be balanced in a certain ratio.

I don't know if this would be helpful to you but my son tested very low for zinc

at Pfeiffer

Treatment Center in Warrenville, IL. I don't recall exactly what his copper

level was but the

nurse told me that his ratio of zinc to copper was not what they would like to

see. They

have a web site hriptc.org if you want to find out more information.

Also my son has Pyrrole Disorder which means his body produces too

many pyrrole cells which bind with Vitamin B-6 and then that compound binds with

zinc

and the whole thing is flushed out of the body in urine, so zinc and B-6 become

very

depleted. Did you have your son's zinc levels tested? If not, that might tell

you something.

The Pyrrole Disorder was diagnosed through a urine test and the zinc/copper

levels were

diagnosed through a blood test.

Also, may I ask you about your mention of a former PANDAS diagnosis? My son may

be

dealing with that...we are waiting for an appointment to test for Strep A. But

he had

sudden onset OCD May 1st of this year and we have been managing it with Olive

Leaf

Extract every day. I am just at the point where I am thinking I should increase

his dose but

I am trying to wait for the doctor's appointment to see if he really does have

an issue with

strep A. How did you get rid of the PANDAS? Or was a just a misdiagnosis? Any

info would

be greatly appreciated.

All the best to you.

Thanks,

in Illinois

>

> Hello,

>

> I was referred to this group to find out the reason why both of my kids

> are copper-toxic, while my husband and I are not. (We did hair

> analysis.) I have a 12 yo dd diagnosed with ADHD/ODD and a 15 yo ds

> with dyslexia/dysgraphia , Scotopic Sensitivity Syndrome, and a former

> PANDAS diagnosis.

>

> Yori

>

[Guest guest]

Pandas (Pediatric Neuropsychiatric Disorder) is on the list

of autoimmune disorders

that LDN may benefit.

http://www.ldndatabase.com/forum/showthread.php?p=40#post40

I saw the news report. The videos of the boys behavior were

moving, as well as the

story that they had no clue that it was due to strep since

he had none of the typical

symptoms of strep infection.

Garnet

gerbspad wrote:

>

>

> No this is not a posting about the cute animals. There was an

> interesting article on the Today show about a book entitled " Saving

> sammy curing the boy who caught OCD " on an illness called PANDAS, which

> is autoimmune in nature. A 10-year old boy caught strep, which in turn

> caused an autoimmune attack focused on the brain. It caused him to

> display OCD type behavior. It took a year to find the right diagnosis

> because the boy showed no symptoms of strep. After treating him with

> antibiotics for a few days, the symptoms went away permanently.

>

> I thought I would mention this as a datapoint for analogies of triggers

> for autoimmune diseases. I know a cure like this isn't as readily within

> reach for most of the rest of us, but the more info that is discovered,

> hopefully the closer we get.

>

>

[Guest guest]

But do you think your child still had the strep. virus in him? or

just the symptoms that is caused.?

On Nov 6, 2009, at 8:38 AM, danasview wrote:

>

> > If you had this or know of someone that has... how do you go

> about testing for it or treating it?

>

> PANDAS is a strep syndrome, and I eliminated strep here with OLE.

>

> Dana

>

>

[Guest guest]

> If you had this or know of someone that has... how do you go about testing for

it or treating it?

PANDAS is a strep syndrome, and I eliminated strep here with OLE.

Dana

[Guest guest]

Strep is a bacteria. By using OLE as recommended for strep/PANDAS my son no

longer has OCD symptoms either and does not have an OCD diagnosis. When we first

took him to get help, that was our number one concern - the OCD. One time he has

had a slight flare of OCD type behaviors, and I believe he was exposed to strep

and we retreated with OLE for awhile and he was fine.

>

> If you had this or know of someone that has... how do you go about testing for

it or treating it?

>

[Guest guest]

was he mean too?

On Nov 6, 2009, at 5:04 PM, mosaictm wrote:

> Strep is a bacteria. By using OLE as recommended for strep/PANDAS

> my son no longer has OCD symptoms either and does not have an OCD

> diagnosis. When we first took him to get help, that was our number

> one concern - the OCD. One time he has had a slight flare of OCD

> type behaviors, and I believe he was exposed to strep and we

> retreated with OLE for awhile and he was fine.

>

>

>

>

> >

> > If you had this or know of someone that has... how do you go

> about testing for it or treating it?

> >

>

>

[Guest guest]

Not sure I understand the question. Mean? As in " behaving mean? " My kid raged 20

hours a day. Threw things. Hit, spit, biting, punching, kicking ALL the time.

His clothing hurt his skin, his shoes were never tied " right " , his pants did not

have the " right " number of pockets or beltloops, nothing ever was " right " and

life was hell.

We do not have this AT ALL anymore.

That's when I knew biomed was our ticket to healing.

> > >

> > > If you had this or know of someone that has... how do you go

> > about testing for it or treating it?

> > >

> >

> >

>

>

>

>

[Guest guest]

this is my child exactly. it seems like it happens with the least bit

of corn, but i always question the panda thing. what is biomed? is

that like biofeed back? i just always remember that she had a lump

under her ear after birth. i always thouhgt it may be an infection

from the hep b vaccine. perhaps its not pandas. i just don't know.

On Nov 7, 2009, at 10:08 AM, mosaictm wrote:

> Not sure I understand the question. Mean? As in " behaving mean? " My

> kid raged 20 hours a day. Threw things. Hit, spit, biting,

> punching, kicking ALL the time. His clothing hurt his skin, his

> shoes were never tied " right " , his pants did not have the " right "

> number of pockets or beltloops, nothing ever was " right " and life

> was hell.

>

> We do not have this AT ALL anymore.

>

> That's when I knew biomed was our ticket to healing.

>

>

>

>

> > > >

> > > > If you had this or know of someone that has... how do you go

> > > about testing for it or treating it?

> > > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

i just don't know if she ever had strep.

On Nov 7, 2009, at 10:08 AM, mosaictm wrote:

> Not sure I understand the question. Mean? As in " behaving mean? " My

> kid raged 20 hours a day. Threw things. Hit, spit, biting,

> punching, kicking ALL the time. His clothing hurt his skin, his

> shoes were never tied " right " , his pants did not have the " right "

> number of pockets or beltloops, nothing ever was " right " and life

> was hell.

>

> We do not have this AT ALL anymore.

>

> That's when I knew biomed was our ticket to healing.

>

>

>

>

> > > >

> > > > If you had this or know of someone that has... how do you go

> > > about testing for it or treating it?

> > > >

> > >

> > >

> >

> >

> >

> >

[Guest guest]

biomed = biomedical approach to healing autism, such as healing the gut,

treating yeast, dealing with nutritional deficiencies (vitamin/mineral),

chelating out metals, eliminating toxins from his environment, etc. - not just

therapies for behaviors, which did NOTHING for us until my son was no longer so

physically sick.

We did have to pull out all his food intolerances/allergies, too.

For us it was soy, high phenols, artificial everything, processed white

flours/sugars, most dairy products, most sugars. Anything that is not tolerated

will show up somehow, usually in behaviors, gut issues, etc.

Sounds like you have some food issues going on that will have to be addressed.

It could be hep B reaction AND PANDAS. Get some tests run and find out.

> > > > >

> > > > > If you had this or know of someone that has... how do you go

> > > > about testing for it or treating it?

> > > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

are there tests for PANDAS?

On Nov 7, 2009, at 2:00 PM, mosaictm wrote:

> biomed = biomedical approach to healing autism, such as healing the

> gut, treating yeast, dealing with nutritional deficiencies (vitamin/

> mineral), chelating out metals, eliminating toxins from his

> environment, etc. - not just therapies for behaviors, which did

> NOTHING for us until my son was no longer so physically sick.

>

> We did have to pull out all his food intolerances/allergies, too.

> For us it was soy, high phenols, artificial everything, processed

> white flours/sugars, most dairy products, most sugars. Anything

> that is not tolerated will show up somehow, usually in behaviors,

> gut issues, etc.

>

> Sounds like you have some food issues going on that will have to be

> addressed.

>

> It could be hep B reaction AND PANDAS. Get some tests run and find

> out.

>

>

>

>

> > > > > >

> > > > > > If you had this or know of someone that has... how do you go

> > > > > about testing for it or treating it?

> > > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hi. Suggest you google PANDAS + strep. Here is one site to help understand.

And, by the way, strep can become sort of invisible to the immune system,

especially if someone has taken a lot of antibiotics. It is still there,

wreaking havoc. Best wishes.

We also have a family member who rages.

http://www.worrywisekids.org/anxiety/pandas.html

>

> are there tests for PANDAS?

[Guest guest]

> But do you think your child still had the strep. virus in him? or

> just the symptoms that is caused.?

Strep is a bacteria. No one at my house has strep any more, based on no

observable symptoms of ANY strep issues, either physical or behavioral, for over

3 years.

Dana

[Guest guest]

What is the treatment protocol? My dd is very OCD and I like OLE for other

antivral antibcterial purposes...

debra

[ ] Re: PANDAS

Strep is a bacteria. By using OLE as recommended for strep/PANDAS my son no

longer has OCD symptoms either and does not have an OCD diagnosis. When we first

took him to get help, that was our number one concern - the OCD. One time he has

had a slight flare of OCD type behaviors, and I believe he was exposed to strep

and we retreated with OLE for awhile and he was fine.

>

> If you had this or know of someone that has... how do you go about testing for

it or treating it?

>

[Guest guest]

Kerri,

I feel your pain...we chelated for two years prior to getting PANDAS as

well...antibiotics made it worse and he seems to be allergic to most. I am with

you-while some may have resolved the issue with chelation, not all of our kiddos

are the same with the same intricate issue surrounding PANDAS. When we figure

it out, we will become one sane and happy family again. Penicillin seems to

work for us but my guy is allergic (rash) so we are working with Dr. Hong

(bioset-allergy-homeopath) to hopefully clear the intolerance so his body

doesn't react as if Penicillin is the enemy. It will be a long process to heal

his body but I think immune is key (allergies, etc). We just finished first

IVIG and now trying to figure out how to keep the strep away...tried it all

natural and antibiotic.

Kersten

www.chicagonow.com/fightingautism

> > > > >

> > > > > My son was born 12 weeks early, he's been diagnosed with a seizure

> > disorder, food intolerances, PDD which has been recently changed to ADHD-C

> > w/ lingering PDD issues and anxiety. He doesn't quite fit anywhere

> > well...not preemie, not ASD and not ADHD. So I lurk a lot in a bunch of

different

> > places. That's the quick intro version.

> > > > >

> > > > > I'm posting today because I haven't seen any mention of this on the

> > list and wanted to make sure that you are all aware.

> > > > >

> > > > > Right now Pepsi is running a contest to grant 32 groups/month with

> > $250K/$50K/$25K/$5K for a total of $1.3 million/month. In order for a

group

> > to win they need to receive one of the top 10 amount of votes in their

> > category in a given month.

> > > > >

> > > > > Dr. Cunningham's PANDAS research is in it's second month running for

> > $50K, only made it to #21 in May, and is needing some more support to

> > reach that top 10 category this month. There is some stiff competition and

so

> > I am here to grovel for support.

> > > > >

> > > > > As you are probably aware Dr. Cunningham's research could have

> > profound implications for a wide variety of our kids.

> > > > >

> > > > > Please take the time to register & vote for this worthy effort. If

> > you do not have firefox browser, this is the easiest way to vote:

> > > > >

> > > > > Vote for PANDAS to receive a $50K grant for research:

> > > > > http://www.refresheverything.com/search/?q=p.a.n.d.a.s & ic=0 & im=0

> > > > >

> > > > > If you do have firefox, you can easily click the tab to view all the

> > information that has been provided about the grant application.

> > > > >

> > > > > For those who do not have firefox and want more information:

> > > > >

> > > > > Information on PANDAS:

> > > > > http://intramural.nimh.nih.gov/pdn/web.htm

> > > > >

> > > > > Information about Dr. Cunningham & PANDAS:

> > > > > http://www.pandasnetwork.org/

> > > > >

> > > > > I apologize for popping in just to ask for a favor, but our kids

> > really need the support on this. Please take the time to vote daily, your

> > participation is critical to winning. Please also consider spreading the

word.

> > > > >

> > > > > Thanks,

> > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

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

> >

> > =======================================================

> >

[Guest guest]

What test was it that came up 194? There is no PANDAS test. Was it ASO or

ANtiDnase B or something else. On either of these, yes 194 is high, but

not really " very high. " There are many kids whose parents I talk to with

numbers over 1000.

NeuroScience Labs used to have a phenomenal test that checked for 6 or 8

things, mostly antibrain antiboides as markers for PANDAS. A few years ago

they discontinued several of their tests and this was one of them. I wish

they'd bring it back.

Kerrie

In a message dated 9/18/2010 11:34:34 A.M. Eastern Daylight Time,

freemanbk@... writes:

nosis. Our son had a positive pandas score from Dr. Cunningham's lab in

Oklahoma (194 - very high!!). Any patients who have been treated for

PANDAS, I would greatly appreciate hearing your stories. Please email me

offline if you would prefer.

Thank you.

[Guest guest]

Have you used inositol at all? Studies prove that even in typical people,

adults and kids,with OCD it is a big help. My son takes 3 grams 3x a day.

Kerrie

In a message dated 9/18/2010 10:31:27 A.M. Eastern Daylight Time,

susan_fund@... writes:

My sons OCD is through the roof and he is having severe separation anxiety

from me (his primary care giver). He keeps checking on wher I am in the

house every few minutes. These are 2 typical symtoms of PANDAs

[Guest guest]

antibiotics never help my son's flares. We take them to kill off anything

he's exposed to as a preventative. The flare is the immune response, the

antibodies attacking the brain. You really have to wait out the immune

response because the body thinks the basil ganglia is strep, and even if the

flare

was triggered by exposure to actual strep, once you kill that strep the

immune response is going to continue because the brain is still there.

For us, flares quiet down but it takes a long time for it to slowly taper

back down to a point of being okay. He's never 100% the way he was before

PANDAS.

Kerrie

In a message dated 9/20/2010 1:11:27 P.M. Eastern Daylight Time,

susan_fund@... writes:

My son is in the midst of a Pandas flare up (OCD, separation anxiety,

aggressiveness, moody). How quickly should the antibiotic start working? I am

wondering if I should ask for a different antibiotic. Should it take a few

days or weeks to begin to see a reduction in symptoms?

[Guest guest]

My son is in the midst of a Pandas flare up (OCD, separation anxiety,

aggressiveness, moody). How quickly should the antibiotic start working? I am

wondering if I should ask for a different antibiotic. Should it take a few days

or weeks to begin to see a reduction in symptoms?

[Guest guest]

What antibiotic are you using? Ery-Tab works great for me, but I'm an adult.

 

Robyn

From: Fund <susan_fund@...>

Subject: Pandas

Date: Monday, September 20, 2010, 10:11 AM

 

My son is in the midst of a Pandas flare up (OCD, separation anxiety,

aggressiveness, moody). How quickly should the antibiotic start working? I am

wondering if I should ask for a different antibiotic. Should it take a few days

or weeks to begin to see a reduction in symptoms?

[Guest guest]

I can feel an improvement within 3 days of doxycycline (a lot of kids are too

young to take that).  But it does take at least a couple of weeks to really

start to 'wake up' out of it.  But I feel it in a reduction of anxiety - at

least within 5 days.

There are a few antibiotics that seemed to make my mind flicker more -

zythromycin being the only one I can remember for sure - but in the early days,

even it helped, because any treatment of strep brought improvement.

Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky dry

coughs with a wheeze, too.

Certain probiotics can set it off.  Don't give yogurt, and never ever give

culturelle or something high in l.rhamusus.  L.bacillus is not good for me, but

I think some kids have probably been able to tolerate it.

(I'm of course an adult, but been dealing with this round since 2003.)

HTH

________________________________

From: Fund <susan_fund@...>

Sent: Mon, September 20, 2010 12:11:10 PM

Subject: Pandas

 

My son is in the midst of a Pandas flare up (OCD, separation anxiety,

aggressiveness, moody). How quickly should the antibiotic start working? I am

wondering if I should ask for a different antibiotic. Should it take a few days

or weeks to begin to see a reduction in symptoms?

[Guest guest]

Hi .

One of the probiotics that was recommended from Great Plains was l. Rhamnosus.

He has pandas and we treat with zithromycin. Is Dr. G or Dr. treating

kids with pandas? If so, what protocol do they use?

Thanks,

From: [mailto: ] On Behalf Of

Sent: September-20-10 10:25 PM

Subject: Re: Pandas

I can feel an improvement within 3 days of doxycycline (a lot of kids are too

young to take that). But it does take at least a couple of weeks to really

start to 'wake up' out of it. But I feel it in a reduction of anxiety - at

least within 5 days.

There are a few antibiotics that seemed to make my mind flicker more -

zythromycin being the only one I can remember for sure - but in the early days,

even it helped, because any treatment of strep brought improvement.

Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky dry

coughs with a wheeze, too.

Certain probiotics can set it off. Don't give yogurt, and never ever give

culturelle or something high in l.rhamusus. L.bacillus is not good for me, but

I think some kids have probably been able to tolerate it.

(I'm of course an adult, but been dealing with this round since 2003.)

HTH

________________________________

From: Fund <susan_fund@... <mailto:susan_fund%40> >

<mailto:%40>

Sent: Mon, September 20, 2010 12:11:10 PM

Subject: Pandas

My son is in the midst of a Pandas flare up (OCD, separation anxiety,

aggressiveness, moody). How quickly should the antibiotic start working? I am

wondering if I should ask for a different antibiotic. Should it take a few days

or weeks to begin to see a reduction in symptoms?

[Guest guest]

, can you tell me why Culturelle or L. rhamnosus would cause a Pandas

flare? My son has been on Culturelle for a while as well as L. rhamnosus. He has

been on Culturelle for clostridia, and hasnt had Pandas flares constantly - they

wax and wane. Neither have strep bacteria in them that I know of! thanks,Pam

>

> I can feel an improvement within 3 days of doxycycline (a lot of kids are too

> young to take that).  But it does take at least a couple of weeks to really

> start to 'wake up' out of it.  But I feel it in a reduction of anxiety - at

> least within 5 days.

> There are a few antibiotics that seemed to make my mind flicker more -

> zythromycin being the only one I can remember for sure - but in the early

days,

> even it helped, because any treatment of strep brought improvement.

> Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky

dry

> coughs with a wheeze, too.

> Certain probiotics can set it off.  Don't give yogurt, and never ever give

> culturelle or something high in l.rhamusus.  L.bacillus is not good for me,

but

> I think some kids have probably been able to tolerate it.

> (I'm of course an adult, but been dealing with this round since 2003.)

> HTH

>

>

>

>

> ________________________________

> From: Fund <susan_fund@...>

>

> Sent: Mon, September 20, 2010 12:11:10 PM

> Subject: Pandas

>

>  

> My son is in the midst of a Pandas flare up (OCD, separation anxiety,

> aggressiveness, moody). How quickly should the antibiotic start working? I am

> wondering if I should ask for a different antibiotic. Should it take a few

days

> or weeks to begin to see a reduction in symptoms?

>

>

>

>

>

>

>

>

>

>

[Guest guest]

No - Dr. Cunningham's CamKinase test. You need to email her and get the test

done on your child. Our son was negative for AntiDnase and ever other

standard test. She has a small lab in the University of Oklahoma. They are

hoping it will become the standard for testing for PANDAS.

From: [mailto: ] On Behalf Of

ratlenhum@...

Sent: September-18-10 2:41 PM

Subject: Re: PANDAS

What test was it that came up 194? There is no PANDAS test. Was it ASO or

ANtiDnase B or something else. On either of these, yes 194 is high, but

not really " very high. " There are many kids whose parents I talk to with

numbers over 1000.

NeuroScience Labs used to have a phenomenal test that checked for 6 or 8

things, mostly antibrain antiboides as markers for PANDAS. A few years ago

they discontinued several of their tests and this was one of them. I wish

they'd bring it back.

Kerrie

In a message dated 9/18/2010 11:34:34 A.M. Eastern Daylight Time,

freemanbk@... <mailto:freemanbk%40ns.sympatico.ca> writes:

nosis. Our son had a positive pandas score from Dr. Cunningham's lab in

Oklahoma (194 - very high!!). Any patients who have been treated for

PANDAS, I would greatly appreciate hearing your stories. Please email me

offline if you would prefer.

Thank you.

[Guest guest]

It wouldn't technically be PANDAS by the very definition of the name starting

with " Pediatric " .  But mine first happened age 9.

________________________________

From: S <iferstevens@...>

Sent: Wed, September 22, 2010 6:17:01 AM

Subject: Re: Pandas

 

I didn't realize an adult could develop PANDAS afer a strep infection.

>

> I can feel an improvement within 3 days of doxycycline (a lot of kids are too

> young to take that).  But it does take at least a couple of weeks to really

> start to 'wake up' out of it.  But I feel it in a reduction of anxiety - at

> least within 5 days.

> There are a few antibiotics that seemed to make my mind flicker more -

> zythromycin being the only one I can remember for sure - but in the early

days,

>

> even it helped, because any treatment of strep brought improvement.

> Mycoplasma pneuomonia can aggrevate pandas too, so look out for little hacky

>dry

>

> coughs with a wheeze, too.

> Certain probiotics can set it off.  Don't give yogurt, and never ever give

> culturelle or something high in l.rhamusus.  L.bacillus is not good for me,

>but

>

> I think some kids have probably been able to tolerate it.

> (I'm of course an adult, but been dealing with this round since 2003.)

> HTH

>

>

>

>

> ________________________________

> From: Fund <susan_fund@...>

>

> Sent: Mon, September 20, 2010 12:11:10 PM

> Subject: Pandas

>

>  

> My son is in the midst of a Pandas flare up (OCD, separation anxiety,

> aggressiveness, moody). How quickly should the antibiotic start working? I am

> wondering if I should ask for a different antibiotic. Should it take a few

days

>

> or weeks to begin to see a reduction in symptoms?

>

>

>

>

>

>

>

>

>

>