RE: Strep

[Guest guest]

My son first had strep 11/25 - so close! And had had

it for 5 days before I realized it. He only ran one

slight fever - 99.9 for a couple of hours. He had a

penicillin shot but no follow up antibiotics.

However, his behavior became really really (REALLY!)

bad after that, and I kept suspecting he was not over

it. On Jan 10th - in the middle of our first

appointment w/Dr. G!! - I came down with it (Oh man

was I sick). I didn't know until we got home and went

to the doctor. They tested me and , but

resisted testing Garrett because he wasn't

symptomatic. I had to insist, asking them to spare me

having to drag him right to another doctor , and he

was also positive. I'm sure he had it since November,

but the antibodies were keeping it somewhat

suppressed. This time he had the penicillin shot, and

Dr. G suggested Biaxin for 10 days. After completing

the Biaxin, he said to have a follow up culture (not

rapid strep) about 48 hours after completing the

antibiotics to make sure it was gone. This time it

was. Some doctors suggest changing their pillow,

buying new tooth brushes, washing sheets real well,

etc after treating for strep.

I developed OCD after strep in my early teens. I had

to walk at a certain rhythm over sidewalks, couldn't

stand to bump a surface on one side without having to

go back and bump the other side to make it even.

Lasted for years! But I had had strep for a year and

a half repeatedly. Proper antibiotic treatment should

help your daughter recover from the new OCD. My son

changed back into a sweet loving child when properly

treated (although there is a little behavior

regression since finishing the antibiotics now). Dr G

prefers Biaxin to the broader spectrum antibiotics.

Don't worry - her OCD really should go away. A lot of

it could be a sensory need (I had to chomp on ice all

day) triggered by the strep. You may have to really

insist on proper treatment if this doesn't resolve

quickly. Don't forget acidophilus too!

--- " drewann2002 <drewann2002@...> "

<drewann2002@...> wrote:

> My 28 month old daughter has just tested positive

> for strep for the

> second time since 11/24. Both times I had to BEG

> her ped to test

> her. He said no way she had strep because she had

> no strep symptoms -

> no fever, throat looked fine. He was shocked she

> had it! He said

> something was going on but didn't have a clue of

> what it could be.

> The only reason I wanted her tested was becacuse I

> have read that

> strep has a connection. Also, around the same

> time (or a little

> earlier) she developed an OCD, starting chewing on

> her right hand

> (and only her right hand). Can anyone give me info

> on this? Is this

> related to PANDA? Thanks for any insight. Drew Ann

> Long

__________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

wow! you were a PANDA before they defined it. I also had unchecked strep for a

while and my father has a weak hear because of strep/rheumatic fever. Another

family I know has a girl who got diabetes I (autoimmune) after a long run with

strep, so it is definitely something to be vigilant about!

Re: STREP

My son first had strep 11/25 - so close! And had had

it for 5 days before I realized it. He only ran one

slight fever - 99.9 for a couple of hours. He had a

penicillin shot but no follow up antibiotics.

However, his behavior became really really (REALLY!)

bad after that, and I kept suspecting he was not over

it. On Jan 10th - in the middle of our first

appointment w/Dr. G!! - I came down with it (Oh man

was I sick). I didn't know until we got home and went

to the doctor. They tested me and , but

resisted testing Garrett because he wasn't

symptomatic. I had to insist, asking them to spare me

having to drag him right to another doctor , and he

was also positive. I'm sure he had it since November,

but the antibodies were keeping it somewhat

suppressed. This time he had the penicillin shot, and

Dr. G suggested Biaxin for 10 days. After completing

the Biaxin, he said to have a follow up culture (not

rapid strep) about 48 hours after completing the

antibiotics to make sure it was gone. This time it

was. Some doctors suggest changing their pillow,

buying new tooth brushes, washing sheets real well,

etc after treating for strep.

I developed OCD after strep in my early teens. I had

to walk at a certain rhythm over sidewalks, couldn't

stand to bump a surface on one side without having to

go back and bump the other side to make it even.

Lasted for years! But I had had strep for a year and

a half repeatedly. Proper antibiotic treatment should

help your daughter recover from the new OCD. My son

changed back into a sweet loving child when properly

treated (although there is a little behavior

regression since finishing the antibiotics now). Dr G

prefers Biaxin to the broader spectrum antibiotics.

Don't worry - her OCD really should go away. A lot of

it could be a sensory need (I had to chomp on ice all

day) triggered by the strep. You may have to really

insist on proper treatment if this doesn't resolve

quickly. Don't forget acidophilus too!

--- " drewann2002 <drewann2002@...> "

<drewann2002@...> wrote:

> My 28 month old daughter has just tested positive

> for strep for the

> second time since 11/24. Both times I had to BEG

> her ped to test

> her. He said no way she had strep because she had

> no strep symptoms -

> no fever, throat looked fine. He was shocked she

> had it! He said

> something was going on but didn't have a clue of

> what it could be.

> The only reason I wanted her tested was becacuse I

> have read that

> strep has a connection. Also, around the same

> time (or a little

> earlier) she developed an OCD, starting chewing on

> her right hand

> (and only her right hand). Can anyone give me info

> on this? Is this

> related to PANDA? Thanks for any insight. Drew Ann

> Long

__________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

My NT daughter had strep two times (one after another) and the second one was

completely without strep simptoms, she just did not fill well (she could not

explain it to me better). Probably we have so many mutations that it comes

sometime without simptoms at all. I am really surprised reading about doctors

who do not want to test for strep, it is the first things in our doctor's office

with ir without simptoms.

Regina

<thecolemans4@...> wrote:My son first had strep 11/25 -

so close! And had had

it for 5 days before I realized it. He only ran one

slight fever - 99.9 for a couple of hours. He had a

penicillin shot but no follow up antibiotics.

However, his behavior became really really (REALLY!)

bad after that, and I kept suspecting he was not over

it. On Jan 10th - in the middle of our first

appointment w/Dr. G!! - I came down with it (Oh man

was I sick). I didn't know until we got home and went

to the doctor. They tested me and , but

resisted testing Garrett because he wasn't

symptomatic. I had to insist, asking them to spare me

having to drag him right to another doctor , and he

was also positive. I'm sure he had it since November,

but the antibodies were keeping it somewhat

suppressed. This time he had the penicillin shot, and

Dr. G suggested Biaxin for 10 days. After completing

the Biaxin, he said to have a follow up culture (not

rapid strep) about 48 hours after completing the

antibiotics to make sure it was gone. This time it

was. Some doctors suggest changing their pillow,

buying new tooth brushes, washing sheets real well,

etc after treating for strep.

I developed OCD after strep in my early teens. I had

to walk at a certain rhythm over sidewalks, couldn't

stand to bump a surface on one side without having to

go back and bump the other side to make it even.

Lasted for years! But I had had strep for a year and

a half repeatedly. Proper antibiotic treatment should

help your daughter recover from the new OCD. My son

changed back into a sweet loving child when properly

treated (although there is a little behavior

regression since finishing the antibiotics now). Dr G

prefers Biaxin to the broader spectrum antibiotics.

Don't worry - her OCD really should go away. A lot of

it could be a sensory need (I had to chomp on ice all

day) triggered by the strep. You may have to really

insist on proper treatment if this doesn't resolve

quickly. Don't forget acidophilus too!

--- " drewann2002 <drewann2002@...> "

<drewann2002@...> wrote:

> My 28 month old daughter has just tested positive

> for strep for the

> second time since 11/24. Both times I had to BEG

> her ped to test

> her. He said no way she had strep because she had

> no strep symptoms -

> no fever, throat looked fine. He was shocked she

> had it! He said

> something was going on but didn't have a clue of

> what it could be.

> The only reason I wanted her tested was becacuse I

> have read that

> strep has a connection. Also, around the same

> time (or a little

> earlier) she developed an OCD, starting chewing on

> her right hand

> (and only her right hand). Can anyone give me info

> on this? Is this

> related to PANDA? Thanks for any insight. Drew Ann

> Long

__________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

----Original Message Follows----

From: " drewann2002

Can anyone give me info on this? Is this

related to PANDA? Thanks for any insight. Drew Ann Long

---------------------------------------------------------------------

Hi, Sorry for the delay in responding. There is a series of articles

that are listed below. Hope they help.

Cheryl

February XXXV. Autoimmune Disorders, Part 8: Animal Models for

Noninflammatory Autoimmune Disorders of the Brain by ph Hallett, M.D.,

and Louise Kiessling, M.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/02febgen.htm

January XXXIV. Autoimmune Disorders, Part 7: D8/17 Reactivity as an

Immunological Marker of Susceptibility to Neuropsychiatric Disorders by

, M.D., and Wayne Goodman, M.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/02jangen.htm

December XXXIII. Autoimmunity, Part 6: Poststreptococcal Autoimmunity by

E. Swedo, M.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/01decgen.htm

November XXXII. Autoimmune Disorders, Part 5: Streptococcal Infection and

Autoimmunity, an Epidemiological Perspective by Debra E. Bessen, Ph.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/01novgen.htm

August XXIX. Autoimmune Disorders, Part 2: Molecular Mimicry by

Stocks, Ph.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/01auggen.htm

July XXVIII. Autoimmunity, Part I by Syed Morshed, M.D., Ph.D., Marcos T.

Mercadante, M.D., Ph.D., and J. Lombroso, M.D.

http://info.med.yale.edu/chldstdy/plomdevelop/genetics/01julgen.htm

Prospective Identification and Treatment of Children With Pediatric

Autoimmune Neuropsychiatric Disorder Associated With Group A Streptococcal

Infection (PANDAS)

Marie Lynd , MD; E. Pichichero, MD

http://archpedi.ama-assn.org/issues/v156n4/abs/poa10262.html

_________________________________________________________________

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[Guest guest]

Cheryl,

> On 7/24/03 2:34 PM, " Cheryl B " <clbro66@...> wrote:

> My son also developed the

> daytime urinary problems which were only recently discussed.

A bell went off in my head when I read this. My 5 year old daughter has

been complaining of a sore throat for months (we thought it was from

allergies... could she have a sore throat from this kind of strep?), has had

repeated bladder infections and a daytime urinary problem. In fact, she is

on long term antibiotics for the problem (but not responding well to the

treatment). I'm not sure if her antibiotic would target strep...

and our son is being treated for PANDAS.

Come to think of it, she has always been feisty, but she has really had some

nasty tantrums since this all started. My husband and I tell each other she

reminds us of Veruca Salt in " Charlie and the Chocolate Factory " ( " Daddy,

GET ME AN OOMPA LOOMPA NOOOOOW! AAAAAAGH.........! " ). I even tried taking

her off of soy to see if that helped.

Could you share info on the daytime urinary problems with me so I can get

her pediatrician to run a strep test? I had never heard of this connection

before. In fact, I even asked the Dr. at the big children's hospital in

Indianapolis if this could be related to strep and she sort of scoffed at

the idea.

Caroline

[Guest guest]

Hi Caroline,

It's usually not connected to a urinary infection. Although it's possible

to have two separate things going on that could confuse the issue. (Like

chronic things (type 2 inflammatory, allergy reactions)contributing to

autistic symptoms and acute (type 1 autoimmune reactions) manifesting as

OCD.

In his case, he would all of a sudden need to urinate. Then he'd need to

race quickly to the restroom, sometimes not making it in time. During those

times when his symptoms are at their worst. he could go through a whole

wardrobe of clothes in one day. Part of that was due to the OCD because

even if he didn't wet, if one drop had touched his clothes he had to change.

This was another major issue between me and the school. I can't tell you

how many times they tried to blame him for being too busy playing, too lazy,

etc. That wasn't the case as with all the other terrible symptoms we had to

deal with.

Cheryl

----Original Message Follows----

From: Caroline Glover <sfglover@...>

Reply-

< >

Subject: Re: Re: strep

Date: Thu, 24 Jul 2003 16:36:55 -0500

Cheryl,

> On 7/24/03 2:34 PM, " Cheryl B " <clbro66@...> wrote:

> My son also developed the

> daytime urinary problems which were only recently discussed.

A bell went off in my head when I read this. My 5 year old daughter has

been complaining of a sore throat for months (we thought it was from

allergies... could she have a sore throat from this kind of strep?), has had

repeated bladder infections and a daytime urinary problem. In fact, she is

on long term antibiotics for the problem (but not responding well to the

treatment). I'm not sure if her antibiotic would target strep...

and our son is being treated for PANDAS.

Come to think of it, she has always been feisty, but she has really had some

nasty tantrums since this all started. My husband and I tell each other she

reminds us of Veruca Salt in " Charlie and the Chocolate Factory " ( " Daddy,

GET ME AN OOMPA LOOMPA NOOOOOW! AAAAAAGH.........! " ). I even tried taking

her off of soy to see if that helped.

Could you share info on the daytime urinary problems with me so I can get

her pediatrician to run a strep test? I had never heard of this connection

before. In fact, I even asked the Dr. at the big children's hospital in

Indianapolis if this could be related to strep and she sort of scoffed at

the idea.

Caroline

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Cheryl,

I apparently didn't catch the beginning of this thread. . .could you please give

me more info. or point me to the previous posts? My son has just started

having urinary accidents which sound just like the situation described below.

It seems as though he is going often and sometimes is not making it in time.

Was the main idea that it was strep-related???

Thanks!

Heidi

Re: Re: strep

Date: Thu, 24 Jul 2003 16:36:55 -0500

Cheryl,

> On 7/24/03 2:34 PM, " Cheryl B " <clbro66@...> wrote:

> My son also developed the

> daytime urinary problems which were only recently discussed.

A bell went off in my head when I read this. My 5 year old daughter has

been complaining of a sore throat for months (we thought it was from

allergies... could she have a sore throat from this kind of strep?), has had

repeated bladder infections and a daytime urinary problem. In fact, she is

on long term antibiotics for the problem (but not responding well to the

treatment). I'm not sure if her antibiotic would target strep...

and our son is being treated for PANDAS.

Come to think of it, she has always been feisty, but she has really had some

nasty tantrums since this all started. My husband and I tell each other she

reminds us of Veruca Salt in " Charlie and the Chocolate Factory " ( " Daddy,

GET ME AN OOMPA LOOMPA NOOOOOW! AAAAAAGH.........! " ). I even tried taking

her off of soy to see if that helped.

Could you share info on the daytime urinary problems with me so I can get

her pediatrician to run a strep test? I had never heard of this connection

before. In fact, I even asked the Dr. at the big children's hospital in

Indianapolis if this could be related to strep and she sort of scoffed at

the idea.

Caroline

_________________________________________________________________

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Thanks, Cheryl...

I always appreciate your input. Sometimes I feel like the hypochondriac

medical students who think they have every terrible disease they study!

Caroline

> On 7/24/03 4:43 PM, " Cheryl B " <clbro66@...> wrote:

> Hi Caroline,

>

> It's usually not connected to a urinary infection. Although it's possible

> to have two separate things going on that could confuse the issue. (Like

> chronic things (type 2 inflammatory, allergy reactions)contributing to

> autistic symptoms and acute (type 1 autoimmune reactions) manifesting as

> OCD.

>

> In his case, he would all of a sudden need to urinate. Then he'd need to

> race quickly to the restroom, sometimes not making it in time. During those

> times when his symptoms are at their worst. he could go through a whole

> wardrobe of clothes in one day. Part of that was due to the OCD because

> even if he didn't wet, if one drop had touched his clothes he had to change.

>

> This was another major issue between me and the school. I can't tell you

> how many times they tried to blame him for being too busy playing, too lazy,

> etc. That wasn't the case as with all the other terrible symptoms we had to

> deal with.

>

> Cheryl

>

>

> ----Original Message Follows----

> From: Caroline Glover <sfglover@...>

> Reply-

> < >

> Subject: Re: Re: strep

> Date: Thu, 24 Jul 2003 16:36:55 -0500

>

> Cheryl,

>

>> On 7/24/03 2:34 PM, " Cheryl B " <clbro66@...> wrote:

>

>> My son also developed the

>> daytime urinary problems which were only recently discussed.

>

> A bell went off in my head when I read this. My 5 year old daughter has

> been complaining of a sore throat for months (we thought it was from

> allergies... could she have a sore throat from this kind of strep?), has had

> repeated bladder infections and a daytime urinary problem. In fact, she is

> on long term antibiotics for the problem (but not responding well to the

> treatment). I'm not sure if her antibiotic would target strep...

>

> and our son is being treated for PANDAS.

>

> Come to think of it, she has always been feisty, but she has really had some

> nasty tantrums since this all started. My husband and I tell each other she

> reminds us of Veruca Salt in " Charlie and the Chocolate Factory " ( " Daddy,

> GET ME AN OOMPA LOOMPA NOOOOOW! AAAAAAGH.........! " ). I even tried taking

> her off of soy to see if that helped.

>

> Could you share info on the daytime urinary problems with me so I can get

> her pediatrician to run a strep test? I had never heard of this connection

> before. In fact, I even asked the Dr. at the big children's hospital in

> Indianapolis if this could be related to strep and she sort of scoffed at

> the idea.

>

> Caroline

______________________________

``````````````````````````````

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

----Original Message Follows----

From: Barb Katsaros <barbkatsaros@...>

Date: Thu, 24 Jul 2003 20:02:06 -0700 (PDT)

Cheryl,

Would you mind explaining what you mean by the type 1

and 2 you refer to? Do you mean 2 different types of

strep strains which yield 2 separate sets of

symptoms--one more autistic-like and one more ocd?

Barb

-------------------------------------------------------------------------

Hi Barb,

Sorry for the confusion. What I was referring to was the immune system

response. I've included a few things below that may help. Chronic Fatigue

Syndrome has findings of more Th2 activation. PANDAS appears to be a Th1

autoimmune disease.

Cheryl

--------------------------------------------------------------------------------\

-----

Helper T-cells are special subpopulations of CD4 (+)T-cells that provide

help to other cells of the immune system in mounting immune responses by

causing cell activation or the secretion of cytokines . Several distinct

types of T-helper cells, designated Th1 , Th2 , and Th3 , have been

identified. These cells have different functions in immunity. The molecular

mechanisms underlying the evolution of these two different T-helper cell

types from common precursors are still not completely known. Thp cells (p

for precursor) are believed to be the precursor cells of Th0 cells. Th0

cells are believed to be precursor cells that develop into either Th1 or Th2

cells. Th0 cells can produce all cytokines found to be secreted into the

conditioned medium of either Th1 or Th2 cells at low levels. Cytokines and a

number of costimulatory proteins (B7 , for example) are known to have roles

in the regulation of differentiation of T-helper cells into the different

subtypes and to influence ratios of Th1 and Th2 cells.

Th1 cells stimulate strong cellular immunity but only weak and transient

antibody responses. In general, Th1 responses are stimulated by

intracellular pathogens (viruses, some mycobacteria, some yeasts , and some

parasitic protozoans). These cells produce a number of cytokines known asTh1

cytokines orType-1 cytokines and including IL2 , IFN-gamma , IL12 and

TNF-beta .

Th2 cells evoke especially strong antibody responses but relatively weak

cellular activity. Th2 responses are usually elicited by free-living

bacteria and other parasites. Th2 cells produce cytokines that are known

asTh2 cytokines orType-2 cytokines and include IL4 , IL5 , IL6 , IL10 , and

IL13 .

Th3 cells are CD4 (+)regulatory cells associated with immune mechanisms

involving oral tolerance towards antigens. These cells are characterised,

among other things, by the secretion of TGF-beta and they have suppressive

properties for Th1 and Th2 cells.

Th1 cells, but not Th2 cells, secrete IL2 , IFN-gamma , and TNF-beta ,

whereas Th2 cells, but not Th1 cells, express IL4 , IL5 , IL6 , and IL10 .

Murine Th2 cells, but not Th1 cells, also express P600 , the human

counterpart of which has been identified as IL13 . A novel cytokine inducing

the synthesis of IFN-gamma in Th1 cells has been identified recently as IGIF

(and renamed IL18 (see also: Interleukins ).

The fact that some of these cytokines have been designated type-1 or type-2

factors does not imply that these cytokines cannot be produced also by other

cells. Producer cells other than T-cells expressing CD4 include CD8

(+)T-cells, monocytes, natural killer cells, B-cells, eosinophils, mast

cells, basophils, and other cells. This is why many immunologists define

immune responses by the types of cytokines controlling these responses

rather than by the types of cells. Also, the actions of Th1 and Th2 cells in

humans are not as clear-cut as they are in the mouse, where these cells are

the primary sources of the cytokines .

Both types of T-helper cells can influence and regulate each other by the

cytokines they secrete. For example, IFN-gamma , secreted by Th1 cells, can

inhibit the proliferation of Th2 cells. IL10 , secreted by Th2 cells, can

suppress Th1 functions by inhibiting cytokine production (see also: CSIF ,

cytokine synthesis inhibitory factor ). The Th2 cytokine IL4 inhibits the

differentiation and/or expansion of Th1 cells. It thus appears that these

functional subsets of helper cells are mutually antagonistic such that the

decision of which subset predominates within an infection may determine also

its outcome. Through the activities of the cytokines produced, Th1 and Th2

cells can keep each other in check and prevent inflammatory reactions in

response to pathogens getting out of control. However, imbalances may also

precipitate inappropriate reactions. It is thought that some autoimmune

disorders may involve overactive Th1 cells while the exacerbation of other

conditions such as allergies may involve overactive Th2 responses.

Th1 and Th2 lymphocytes also express a different repertoire of receptors for

chemokines (Bonecchi et al). Human Th1 cells preferentially express the

chemokine receptors CXCR3 and CCR5 , whereas Th2 cells display mostly CCR4

and some CCR3 . The agonists for CXCR3 , mig , I-TAC , and IP-10 , have been

shown to act as antagonists for the chemokine receptor CCR3 (Loetscher et

al). I-TAC , mig , and IP10 compete for the binding of eotaxin to cells

epressing CCR3 and inhibit migration and Ca(2+) changes induced in such

cells by stimulation with eotaxin , eotaxin-2 , MCP-2 , MCP-3 , MCP-4 , and

RANTES . Chemokines that attract Th1 cells by acting through the CXCR3

receptor may enhance the polarization of T-cell recruitment and tissue

homing by blocking concomitantly the migration of Th2 cells in response to

CCR3 ligands.

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[Guest guest]

Hi Gaylen,

I'm fairly certain that strep isn't involved...or at least it's not

the one being tested for. Group A Strep is the most common trigger

and the focus of studies.....but not the only possible trigger. To

the best of my recollection, my children have never been diagnosed

with a strep infection and have never tested positive.

I remember one study discussing people with a certain heritage who

apparently had a low susceptability to Group A strep, yet a high

frequency of rheumatic type diseases. The gist of it was a non-A

type appeared to be the trigger in this population. One of the

abstracts I posted on movement disorders mentions a non-strep A

trigger.

What I see on his bloodtest is the sedrate increasing. The other

markers were tests that were only done the last time things were

really bad. I can't be positive they'll always show up. It's

possible they only appear after an extended period of time without

treatment.

Due to the lack of strep thing... I'd been unable to secure the

desperately needed antibiotics. When we went to the rheumatologist

the tests showed some other things like a positive ANA and elevated

C-reactive protein in addition to his sedrate that was close to 50.

(I think the normal level for a male is around 10)

In your other post you mentioned the psych behavior. My sons OCD

problem appeared when he was seven. The symptoms that came with

that were unlike anything I'd experienced previously. There are so

many extremely difficult symptoms due to the part of the brain

that's malfunctioning. My son has a drastic change in areas

involving cognition, sensory, motor, and emotional control.

The behavior and drastic emotional changes are the hardest to deal

with because they are what everyone sees. (and don't understand)

They range from hysterical laughing, to panic attacks, extreme fear,

and extreme anger and emotional meltdowns.

The first time his symptoms appeared our school psych wanted me to

send him up north for a few days to be evaluated because he

obviously thought my son was extremely mentally ill. By this time

I'd found a magazine article that briefly mentioned the research on

PANDAS. It didn't mention much besides OCD, but I knew there had to

be a connection between the handwashing and all the other symptoms

that were appearing. He'd also had a very strange skin reaction

appear during the time he was having all these other symptoms. I

already knew his ASD symptoms were immune related.

I have extreme compassion for anyone dealing with this illness. It

broke my heart to see what was happening to my son. Like being

called to the school after things were so bad that they cleared

the room. You walk in and there are broken crayons everywhere, your

childs shoes and socks were obviously taken off for something else

that could be thrown....and there's your child peering out from

under the desk...totally out of it and growling. Just thinking

about it is still so painful that it's triggering those familiar

tears. So I'll stop here.

>

> Would you mind sharing more about the other markers that you've

seen that you

> feel are connected to the strep flare ups and improve with the

antibiotic

> treatment?

>

> Interestingly, while I was at my doctor this week, she mentioned

that she was

> seeing a huge number of very strange strep cases that weren't

presenting

> themselves in the usual ways so much so that she was running a

strep test on

> everyone who came in with even the slightest cough. I've been

told to take my son

> in to have his glands checked next time he has a stuck brain flare

up but I

> wonder if it's possible to have a strep flare up without swollen

glands.

> Gaylen

>

>

>

[Guest guest]

----Original Message Follows----

From: <thecolemans4@...>

>Hi Cheryl -

I remember something about that abstract, but must not

have saved it. Do you happen to know if Group B strep

>can increase ASO titers? I know it is supposed to be

a benign bacteria except during labor/delivery or if

>exposed to an infant. But the understanding is it is

not important in adults (although I'm sure they'd tack

>on except immune suppressed etc).

>Thanks-

>

hi ,

Here's one of the abstracts I mentioned. I'm also including a couple that

discuss the strep tests.

Bacteria in general can trigger an inflammatory reaction. Some abstracts

posted previously were on endotoxin (LPS) exposure and the CNS. It's not

the same type of reaction as PANDAS although they both can change how the

brain functions. There are several new ones I'll post soon.

Lancet Infect Dis. 2004 Apr;4(4):240-5.

Acute rheumatic fever: a chink in the chain that links the heart to the

throat?

Mc M, Currie BJ, Carapetis JR.

Infectious Diseases and International Health Unit, Menzies School of Health

Research and Darwin University, Darwin, New Territories, Australia.

malcolm@...

Acute rheumatic fever (ARF) remains a major problem in tropical regions,

resource-poor countries, and minority indigenous communities. It has long

been thought that group A streptococcal (GAS) pharyngitis alone was

responsible for acute rheumatic fever; this belief has been supported by

laboratory and epidemiological evidence gathered over more than 60 years,

mainly in temperate climates where GAS skin infection is uncommon. GAS

strains have been characterised as either rheumatogenic or nephritogenic

based on phenotypic and genotypic properties. Primary prevention strategies

and vaccine development have long been based on these concepts. The

epidemiology of ARF in Aboriginal communities of central and northern

Australia challenges this view with reported rates of ARF and rheumatic

heart disease (RHD) that are among the highest in the world. GAS throat

colonisation is uncommon, however, and symptomatic GAS pharyngitis is rare;

pyoderma is the major manifestation of GAS infection. Typical rheumatogenic

strains do not occur. Moreover, group C and G streptococci have been shown

to exchange key virulence determinants with GAS and are more commonly

isolated from the throats of Aboriginal children. We suggest that GAS

pyoderma and/or non-GAS infections are driving forces behind ARF in these

communities and other high-incidence settings. The question needs to be

resolved as a matter of urgency because current approaches to controlling

ARF/RHD in Aboriginal communities have clearly been ineffective. New

understanding of the pathogenesis of ARF would have an immediate effect on

primary prevention strategies and vaccine development.

Publication Types:

Review

Review, Tutorial

PMID: 15050943 [PubMed - indexed for MEDLINE

Biol Psychiatry. 2004 Jan 1;55(1):61-8.

Detecting pediatric autoimmune neuropsychiatric disorders associated with

streptococcus in children with obsessive-compulsive disorder and tics.

TK, Sajid M, Soto O, Shapira N, Edge P, Yang M, MH, Goodman WK.

Department of Psychiatry, University of Florida, Gainesville, Florida

32610-0256, USA.

BACKGROUND: A subgroup of children with obsessive-compulsive and tic

disorders are proposed to have an infectious trigger. The purpose of this

study was to investigate the relationship between group A streptococcal

titers and symptom fluctuations in children with a clinical course

resembling that described for pediatric autoimmune neuropsychiatric

disorders associated with streptococcus. METHODS: Twenty-five children with

obsessive-compulsive disorder and/or tic disorder were evaluated for

neuropsychiatric severity and group A streptococcal antibody titers

(streptolysin O, deoxyribonuclease B, and carbohydrate A) at 6-week

intervals for > or = six consecutive evaluations (total visits=277).

RESULTS: Children with large symptom fluctuations (n=15) were compared with

children without dramatic fluctuations (n=10). Co-movements of

obsessive-compulsive/tic severity and group A streptococcal antibodies were

assessed. In subjects with large symptom changes, positive correlations were

found between streptococcal titers and obsessive-compulsive severity rating

changes (p=.0130). These subjects were also more likely to have elevated

group A streptococcal titers during the majority of observations (p=.001).

Tic symptom exacerbations occurred more often in the fall/winter months than

spring/summer months (p=.03). CONCLUSIONS: Patients with marked

obsessive-compulsive/tic symptom changes may be characterized by

streptococcal titer elevations and exhibit evidence of seasonal tic

exacerbations.

PMID: 14706426 [PubMed - indexed for MEDLINE]

Scand J Infect Dis. 2002;34(6):407-12.

Antibody to streptococcal cysteine proteinase as a seromarker of group A

Streptococcal (Streptococcus pyogenes) infections.

Batsford S, Brundiers M, Schweier O, Horbach E, Monting JS.

Department of Immunology, Institute of Medical Microbiology and Hygiene,

Klinikum der Albert-Ludwigs-Universitat, Freiburg, Germany.

bats@...

Serological tests are commonly employed to aid the diagnosis of

Streptococcus pyogenes infections, particularly when non-suppurative

sequelae are suspected. Conventional laboratory practice is to measure

antibody levels to various combinations of the extracellular group A

Streptococcus (GAS) antigens streptolysin O (SLO), DNase B, streptokinase

and hyaluronidase. Antibody to the extracellular cysteine proteinase

streptococcal pyrogenic exotoxin B (SPE and its precursor zymogen is also

produced in response to GAS infections. An indirect hemagglutination test

for antibody to zymogen/SPE B was established and evaluated in serum samples

from 168 patients with proven (n = 27) or suspected GAS (n = 141)

infections, which were also screened for antibodies using the 4 conventional

tests. For comparison, sera from 56 patients infected with a variety of

other pathogens, as well as sera from 16 patients infected with either S.

agalactiae or S. pneumoniae and 34 sera from healthy subjects, were tested.

Statistical analysis confirmed that antibody to zymogen/SPE B is a

serological marker that can discriminate GAS infections. It can be ranked

with the anti-SLO titer, currently the most widely used test, as a marker of

an antecedent GAS infection.

PMID: 12160165 [PubMed - indexed for MEDLINE]

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[Guest guest]

We always used Cefzil and later Ceftin, but we also

did about 12 weeks on ery-ped. Ery-ped seems to be Dr

G's choice for long-term treatment. When we used

Cefzil, he always wanted it extended from the usual 10

days to 14 days, and the docs here don't generally

mind that. Ery-ped can be used for months... but you

would ask for the banana flavored (unless you can use

tablets). Ery-ped is erythromycin and that version

seems to be the easiest on the stomach and not as hard

on the good gut bacteria. You do still have to use

acidophilus (two hours before or after the antibiotic)

regardless of what you use to help keep yeast under

control - as well as other negative bacteria that

could over-grow during antibiotic therapy.

--- pscan5 <randi5k@...> wrote:

> what does doc G give for strep. I understand he has

> given something

> long term an has worked really work.

> pscan5

>

>

>

>

__________________________________________________

[Guest guest]

Thank you for the responses about this! I

will try those and look at the foot and mouth thing.

The salt water gargle is helping. J

Love,

[Guest guest]

Robyn,

I can relate to the " tides " you see waxing and waning in your son. If only

we had a crystal ball to understand them all!

We have had other times where my son was " off " (but probably never worse off

than the time I described in my post) and Dr. G even had us do a trial of

antibiotics to see if it helped, but it didn't. So, though it was strep

that time, there are other factors involved that we can't seem to pin down.

If you're starting your son with Dr. G, I wouldn't think it would take much

convincing to get him to run an ASO with the regular labs. He'd probably

get to it eventually even if you didn't bring it up, but with your history

I'd definitely bring it up! My guess is that he'll be watching the ASO like

a hawk with your family history.

One more thing I'll throw in... my son had a heart murmur that Drs. would

notice when he was young (even did an ultrasound on it). After the strep

ordeal, I mentioned to Dr. G that I wondered if the strep had been around

for a long time and if it had had something to do with my son's heart

murmur. He said he'd wondered about that, too. I don't know if the murmur

is gone, but I do think maybe it's better as nobody has mentioned it for

years. You may have read that there's a connection between untreated strep

and mitral valve prolapse, which makes me wonder what may come in the future

and hope we've prevented some damage. I'm so glad that Dr. G is monitoring

these kids. Who else would have looked for strep in my son? He wasn't even

" sick " acting... just spaced out.

Caroline

[Guest guest]

Hey Caroline -

Can you point me to the data on MVP and untreated

strep? I retroactively believe that my " severe MVP "

when I was 18 was due to untreated strep - I was in an

acute state of PANDAS at the time too. The MVP was

'so severe' (I think they've changed their standards

since the early 80s) that they mentioned mitral valve

replacement. I had bad CFIDS at the time too - (mix

the two together and throw in a bunch of tics and lol

my goodness how did I get through and still have so

much fun back then! gosh)

Anyway - when I made it to my " healthy years " , my

heart murmer was silent. I never had the echo to

confirm that it was gone (gee I wish I had!) so that I

could skip antibiotics for some things... but when I

had strep hit a few years back, I started asking my

doctor " Do you hear my heart murmer yet? Will you

document that you don't? " so that when it did become

audible (which it did a couple of months later) it

would be documented as a change. Turns out - she

never documented that she had checked and that it had

been negative. That would have been VERY helpful had

she done as I had asked.

BTW - erythromycin has AT TIMES (not always) made my

flickering brain worse. I would suggest that there's

a few children out there that would also experience

that - not many, but a few ... they would also

probably react to lactobacillus (and possibly mildly

to acidophilus too - I've about confirmed to myself

that I react to acidophilus so I have to stick to

kyodophilus).

Guess I'm going to get interested in this again as my

brain is slowing down, and gee. ... I work in a

childcare facility now (autism preschool and

outpatient care) and now that I've started working

there, everyone is coming down with strep and

mycoplasma pneumonia. 4 people out today w/'walking

pneumonia' lol! And I had been doing so well I

decided I could go back to work now. Maybe it's

time to ask for some preventive antibiotics. Guess

I'll test the ery-ped again and see if I get crazy.

You'll all be able to tell - suddenly I'll start

posting long posts like crazy. Hmmm this post is

getting long and I just wanted to ask if you had that

research. Uh oh.

--- Caroline Glover <sfglover@...> wrote:

>

> One more thing I'll throw in... my son had a heart

> murmur that Drs. would

> notice when he was young (even did an ultrasound on

> it). After the strep

> ordeal, I mentioned to Dr. G that I wondered if the

> strep had been around

> for a long time and if it had had something to do

> with my son's heart

> murmur. He said he'd wondered about that, too. I

> don't know if the murmur

> is gone, but I do think maybe it's better as nobody

> has mentioned it for

> years. You may have read that there's a connection

> between untreated strep

> and mitral valve prolapse, which makes me wonder

> what may come in the future

> and hope we've prevented some damage. I'm so glad

> that Dr. G is monitoring

> these kids. Who else would have looked for strep in

> my son? He wasn't even

> " sick " acting... just spaced out.

>

> Caroline

>

>

>

>

>

________________________________________________________________________________\

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[Guest guest]

I feel so grateful to have found this list and Dr. G. We met him a couple of

weeks ago with our middle son, and I don't think I've ever felt so hopeful about

Noah's future. We take him tomorrow for a neurspect scan. I purchased Dr. G's

video and so much of what he says in his presentation explains what I believe

we're seeing in our two sons. It's so hard to get mainstream docs to listen.

When my ASO titers came back at 2,000 my doctor's PA said that we didn't have to

treat unless I have symptoms. Are fatigue, sore throat, palpitations consider

symptoms? I think so! Now I see a rheumatologist.

We get Noah's labs back on the 20th and I can't wait to see where we go next.

I'm in the process of gathering 's records together, so we can start the

process with him.

Thanks again for the info. I appreciate it.

Robyn

Caroline Glover <sfglover@...> wrote:

Robyn,

I can relate to the " tides " you see waxing and waning in your son. If only

we had a crystal ball to understand them all!

We have had other times where my son was " off " (but probably never worse off

than the time I described in my post) and Dr. G even had us do a trial of

antibiotics to see if it helped, but it didn't. So, though it was strep

that time, there are other factors involved that we can't seem to pin down.

If you're starting your son with Dr. G, I wouldn't think it would take much

convincing to get him to run an ASO with the regular labs. He'd probably

get to it eventually even if you didn't bring it up, but with your history

I'd definitely bring it up! My guess is that he'll be watching the ASO like

a hawk with your family history.

One more thing I'll throw in... my son had a heart murmur that Drs. would

notice when he was young (even did an ultrasound on it). After the strep

ordeal, I mentioned to Dr. G that I wondered if the strep had been around

for a long time and if it had had something to do with my son's heart

murmur. He said he'd wondered about that, too. I don't know if the murmur

is gone, but I do think maybe it's better as nobody has mentioned it for

years. You may have read that there's a connection between untreated strep

and mitral valve prolapse, which makes me wonder what may come in the future

and hope we've prevented some damage. I'm so glad that Dr. G is monitoring

these kids. Who else would have looked for strep in my son? He wasn't even

" sick " acting... just spaced out.

Caroline