Re: PANDAS and PITANDS

[Guest guest]

Getting one strep titer test won't tell you anything. You need several taken

across time to determine what your child's normal levels are. And even if you

get a higher than normal reading (for your child), it only proves they had strep

in the past few months. There's no blood test to " prove " PANDAS - it's a

clinical diagnosis made through observation and history, just like OCD.

The way we convinced our pediatrician was to keep a journal and whenever we saw

an abrupt change in behavior, we went in for a strep test. The first two

episodes, my son had strep. The next few episodes, negative for strep but

inflamed tonsils and swollen glands. In each case, after being on antibiotics,

my son's behaviors (ocd, tic, hyperactivity, dysgraphia, frequent urination

urges, extreme anxiety, mood volatility and rages/aggression)the behaviors that

started suddenly would gradually disappear as he returned to good health (though

in bad episodes, this was weeks after the antibiotics were done). This is called

a " sawtooth pattern " of behavior. It spikes with illness, then gradually

dissipates. It's different than the gradual waxing/waning of classic disorders.

After a long winter of documenting and visits to the pediatrician, she finally

sees a direct correlation and agrees we're dealing with PANDAS/PITANDS.

Here's another clue - since PANDAS causes inflammation of basal ganglia, Motrin

often brings some relief to some of our symptoms.

Because my son's symptoms are now triggered by more than strep, and each episode

has been less severe as we learn to catch it early, we take each episode as it

comes. We are one of the few PANDAS families I know that are not using

prophylactic antibiotics. We are instead focused on boosting the immune system

and using behavior therapy to manage through symptoms that come with milder

episodes. The therapy gives my son tools to help with general anxiety he has

always. We also use Inositol for the anxiety.

But I guess the main message is that if a kid has PANDAS and not classic OCD, TS

or adhd, then the medications used for these disorders may not be effective at

alleviating your child's symptoms,and you risk giving your child a medication

that's not needed when they're otherwise healthy. If you see sawtooth symptoms,

you may do better by advocating for a round of antibiotics and an

anti-inflamatory (motrin, prednisone, steriods) before you turn to other

medications. If you see improvement, you may want to consider PANDAS. If no

apparent improvement within a few weeks, then you are probably dealing with the

classic variety of a disorder.

If you would like web links to do more research, let me know and I'll send you

some.

>

> Hi,

>

> We are getting ASO strep titers for my daughter. Does anyone know of

> a list of viral titers that would be needed to show PITANDS? I may

> try to have that done also. Thanks so much!

>

> Sandy

>

[Guest guest]

Thank you, Colleen and . I appreciate the information on PANDAS/

PITANDS. I am really unsure of whether this fits my daughter. She

really has not had a cold or strep for a long time so I doubt that

the titers will show anything. I do think that the very beginning of

this journey with her started with some sort of autoimmune reaction -

she had chronic hives for about 6 months. And strangely enough, I had

chronic hives at the same time but mine lasted for three years. I

know that mine were the result of a series of viral or bacterial

infections with a lot of stress and I am still dealing with the

aftermath of that. I am not sure what triggered hers. I know when we

had the hives, I read a lot about IVIG because they sometimes use

that in treating chronic hives. It seems there is an answer somewhere

here but not sure how to find it as she does not have active strep or

infection now, just the OCD and aspergers (this was diagnosed after

the chronic hives that she had).

Sandy

[Guest guest]

At times I'd wondered about and PANDAS or PITANDS his onset seemed so

abrupt. Even though he had a " bit " of OCD at younger ages (tracing, sometimes

erasing, reassurance stuff...) but it wasn't anything that was a problem or

chronic (well, the reassurance stuff got on my nerves, LOL). Anyway, suddenly

6th grade and 24/7 OCD overnight, constant touching, compulsions, anxiety....

So I wondered " has he been sick, did I miss something... " But thinking back I

thought I could sort of, in hindsight, see OCD coming maybe; that was the summer

he seemed to be getting shorter on temper, actually talking back to his

brothers.... So maybe that was a beginning. And then that his OCD worsens with

a fever, and that time with strep.... The one time he was then on an antibiotic

I was hoping for his OCD to improve a lot, but " no. " Plus I guess since his OCD

never really " waned " that first year, except the improvement with inositol he

had but OCD was still constantly " there. "

I got bloodwork done on him for his thyroid and for strep antibodies after one

illness with increase, but all normal. Trying to recall (this was years ago),

he'd been sick/fever, his OCD increased, no strep signs, but strep had been

going around, thought he could have it without bad symptoms or something.

Oh well, I'm rambling as usual! But in the back of my mind, I still wonder

about the fevers and worsening. Even though OCD is still there year-round....

>

> Getting one strep titer test won't tell you anything. You need several taken

across time to determine what your child's normal levels are. And even if you

get a higher than normal reading (for your child), it only proves they had strep

in the past few months. There's no blood test to " prove " PANDAS - it's a

clinical diagnosis made through observation and history, just like OCD.

[Guest guest]

Can anyone explain what a classic wax/wane pattern is, versus a PANDAS pattern?

Also, can you have PANDAS without having tics & /or hand movements? My daughter

is definitely worse in cold/flu season & has now had what we'd call 3 " attacks " ,

with very little sign of OCD in between times. Just curious - I really struggle

to understand this, as I find the doctors we go to tend to not understand PANDAS

at all (ie one doc, explained, then he offered us a anti-nausea... I asked, for

a stomach ache that is in her head???)

Thanks for all the feedback on this!

in NC

[Guest guest]

Here are some links that will help explain things. Tics are not a " required "

symptom - just a common one. The primary " clue " is " sudden/overnight " onset in

close proximity to infection (initially triggered by strep, but later can be

triggered by other infectious agents).

I highly recommend " What Every Psychiatrist Should Know About PANDAS " and Dr.

Swedo's webcast " Dr. Swedo webcast Fall 2008 autism conference

Progress and Pitfalls & Notes on PANDAS " - don't be mislead by the fact she gave

this presentation at an autism conference. Autism is her new line of research

but PANDAS is not part of the spectrum.

Swedo's presentation is the best overall explanation of the disease and how it

differs from classic OCD. It will answer many of your questions and discusses

" minor " symptoms that had me saying - OMG - that's my son! "

What Every Psychiatrist Should Know About PANDAS

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2413218

PANDAS Information from NIH

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

Dr. Swedo webcast Fall 2008 autism conference

Progress and Pitfalls & Notes on PANDAS

http://www.autism.com/danwebcast/video-list.asp?showsession=Science & conference=S\

anDiego

How Strep Triggers Obsessive Compulsive Disorder – New Clues

http://www.nimh.nih.gov/science-news/2006/how-strep-triggers-obsessive-compulsiv\

e-disorder-new-clues.shtml

PANDAS – Separating Fact From Fiction

http://www.pediatrics.org/cgi/content/full/113/4/907

Childhood Onset OCD and Tic Disorders: Case Report and Literature Review

http://intramural.nimh.nih.gov/pdn/pubs/pub-1.pdf

NIMH Recent Research Links

http://intramural.nimh.nih.gov/pdn/recent_publications.htm

To answer someone else's question - PANDAS is an autoimmune disease. When the

body gets strep (or later - some other infection) - it produces anitbodies that

fight the infection. But the body lacks sufficient " regulatory " T-Cells that

tell the body to come down off of high alert. Hyper antibodies looking for

trouble then think the brain's basal ganglia cells look like the strep cells

(called molecular mimicry) and they attack the basal ganglia in addition to the

infectious agent, causing inflammation and interfering with the brain's normal

communication. The basal ganglia is responsible for motor control, impulse

control and thought/emotion control. When it doesn't function properly, you get

OCD, Tourette's, ADHD, rage, anxiety, etc. In PANDAS, once the body fights the

infection and comes off of high alert, the attack on the basal ganglia subsides

and the inflammation goes away (which is why motrin may help some symptoms

during an episode). Then you get your kid back and everything's normal until

the next illness.

PANDAS differs from classic disorders because the onset is sudden, just like you

go to bed feeling fine and wake up knowing the flu is coming on. It doesn't

creep up, it pounces. It also differs because the trigger is an infection. So

treatment focuses on treating/eliminating/preventing the trigger. So many kids

are on antibiotics year-round or 6 months of the year during fall/winter. Or

they focus on supplements that boost the immune system. In severe cases,

parents turn to IVIG as a way to give kids more regulatory T-cells and help

their bodies learn the appropriate response to infection instead of the

autoimmune response.

The use of medications such as SSRIs, haldol for tics, respiradol for mood

management - take 6 weeks to be effective, by which point the illness is likely

gone. So you'd be putting your kid on meds that aren't appropriate for a now

healthy kid. Instead, PANDAS families generally consider antibiotics,

anti-inflammatories, short-term steriod treatments, and in severe cases, IVIG.

Cognitive behavior therapy is also very helpful, as it teaches your child how to

manage thoughts and symptoms during an episode.

PANDAS is a pediatric disorder, so as the immune system matures around puberty,

it is generally thought that kids will outgrow their PANDAS response. A long

term study of PANDAS kids is underway, but no results published yet.

As for thinking your child as had too many " episodes " for it to be strep

related, strep is generally the initial trigger. My son had strep twice last

fall and had a severe PANDAS reaction. Since then, he's had several bacterial

infections that also produced symptoms. Antibiotics alleviated his symptoms in

each case. In a " normal " kid, you tend to not count how many colds and sore

throats they get each year, even if it's a lot. But in PANDAS kids, each illness

sticks in your mind and symptoms can take weeks to subside. So it can feel like

they're almost always sick to the point you question if maybe it's just regular

OCD/TS/ADHD.

By the way - the AMA doesn't support a PANDAS dx. Many pediatricians will not

work with you to reach a PANDAS dx. It's a frustrating process. Many kids get

misdiagnosed because of the prejudice against the disorder (no doc wants to give

long-term anitbiotics so they resist any dx that leads to that).

Sorry for the exceptionally long post. It's just a topic near and dear.

>

> Can anyone explain what a classic wax/wane pattern is, versus a PANDAS

pattern? Also, can you have PANDAS without having tics & /or hand movements?

[Guest guest]

, thanks for all the info and the links. It's always nice to get

informative posts like this, so don't worry about the length. It's like having

one post to go to and not searching thru all of them looking for info.

>

> Here are some links that will help explain things. Tics are not a " required "

symptom - just a common one. The primary " clue " is " sudden/overnight " onset in

close proximity to infection (initially triggered by strep, but later can be

triggered by other infectious agents).

>

[Guest guest]

Hello !

You seem to be very knowledgeable about PANDA.

My daughter was diagnosed with OCD in July (she is 13 now). She was always

very difficult, many things bothered her, but definitely it wasn't clear

OCD. In June thing went down very fast, in two weeks she was showering all

night and during day she was in bed not able to touch anything.

During our first psych. appointment doctor did her throat culture (it came

negative) and gave us paper for testing antibodies. But my daughter's OCD

was so severe that it took her 8 month to be able to go for blood test. It

also came negative, so doctor told us that it is definitely not PANDA. But I

am still not sure because my mother and my sister both had rheumatic fever.

And my daughter has had all these months also joint pains. First I have

thought that it is from gymnastics (she did competitive gymnastics before

illness). Last time when I mentioned to doctor that this joint pains can be

caused by PANDA, he told me " We ruled PANDA out don't we? " . But I think that

the test for antibodies was done too late to say anything.

My daughter never used antibiotics; she is generally very strong and

healthy. She had couple times cold, sore throat or fever, but everything

went away on its own in couple days.

Today she complained about sore throat. And I don't know what to do. If to

go for throat test and give her antibiotics if it is strep infection, or I

shouldn't give her antibiotics and watch if her OCD is going to be worse in

couple weeks to see if it is PANDA.

I am sure that she will be O.K in three days without any medication and this

is reason why I hesitate to give her antibiotics.

She is on Prozac and Clonazepam now.

Could you please tell me your opinion on this problem?

Thanks

Marcela

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[Guest guest]

Marcela,

Because of your family history of rheumatic fever, i think you should have your

daughter tested for strep and if positive, definitely give her antibiotics.

Even tho you feel she would get better on her own, the damage that rheumatic

fever can cause is far too risky to not treat with antibiotics. So forget about

waiting to see if she gets worse so you can watch for PANDAS symptoms. If she

has strep, she needs to be protected from RF.

As for PANDAS, I'm only an " expert " on the way my own son presents with

symptoms. Certainly the sudden onset fits the criteria, but kids with regular

OCD can flair suddenly too. In my own experience with other PANDAS moms, I

don't know of any cases where the OCD symptoms lasted for 8 months. You also

didn't mention any other things like a tic, urinary changes (more frequent urges

or nighttime bedwetting), hyperactivity, dramatic changes in handwriting, sudden

mood changes... And while a rapid strep test can miss 10% of positive cases,

the lack of other symptoms plus your negative strep result at the time of flair

up don't seem to point to PANDAS.

Finally, your daughter was 13 at the time, which would be on the older side for

a PANDAS diagnosis. Not impossible, but if she's showing signs of puberty,

she'd be at the age where kids start to outgrow PANDAS, not where they start to

show signs for the first time.

As for her aches and pains, I'd be pushing your doctor to pursue this symptom

further. Certainly I'd want to rule out rheumatic fever. But I'd also want to

look at rheumatoid arthritis, fibromylagia etc. Chances are there's something

real causing your daughter's complaints.

You can always keep PANDAS in the back of your mind, but your daughter's

experience doesn't sound like the PANDAS situations I'm personally aware of. I

now this may not be the response you were hoping for. There are other PANDAS

moms in this forum, so they may have different experiences/opinions. I have no

medical background, so this is only my opinion. I hope others chime in if they

have other information...

How is your daughter doing on her medications? Is she seeing a therapist?

>

In June thing went down very fast, in two weeks she was showering all

> night and during day she was in bed not able to touch anything.

>

it took her 8 month to be able to go for blood test. It

> also came negative, so doctor told us that it is definitely not PANDA. But I

> am still not sure because my mother and my sister both had rheumatic fever.

> And my daughter has had all these months also joint pains.

>

>

> Today she complained about sore throat. And I don't know what to do. If to

> go for throat test and give her antibiotics if it is strep infection, or I

> shouldn't give her antibiotics and watch if her OCD is going to be worse in

> couple weeks to see if it is PANDA.

>

[Guest guest]

Hello ,

Thank you very much for your respond. Your information is very helpful for

me.

Marcela

_____

From:

[mailto: ] On Behalf Of lmatheos

Sent: April 19, 2009 4:07 AM

To:

Subject: Re: PANDAS and PITANDS

Marcela,

Because of your family history of rheumatic fever, i think you should have

your daughter tested for strep and if positive, definitely give her

antibiotics. Even tho you feel she would get better on her own, the damage

that rheumatic fever can cause is far too risky to not treat with

antibiotics. So forget about waiting to see if she gets worse so you can

watch for PANDAS symptoms. If she has strep, she needs to be protected from

RF.

As for PANDAS, I'm only an " expert " on the way my own son presents with

symptoms. Certainly the sudden onset fits the criteria, but kids with

regular OCD can flair suddenly too. In my own experience with other PANDAS

moms, I don't know of any cases where the OCD symptoms lasted for 8 months.

You also didn't mention any other things like a tic, urinary changes (more

frequent urges or nighttime bedwetting), hyperactivity, dramatic changes in

handwriting, sudden mood changes... And while a rapid strep test can miss

10% of positive cases, the lack of other symptoms plus your negative strep

result at the time of flair up don't seem to point to PANDAS.

Finally, your daughter was 13 at the time, which would be on the older side

for a PANDAS diagnosis. Not impossible, but if she's showing signs of

puberty, she'd be at the age where kids start to outgrow PANDAS, not where

they start to show signs for the first time.

As for her aches and pains, I'd be pushing your doctor to pursue this

symptom further. Certainly I'd want to rule out rheumatic fever. But I'd

also want to look at rheumatoid arthritis, fibromylagia etc. Chances are

there's something real causing your daughter's complaints.

You can always keep PANDAS in the back of your mind, but your daughter's

experience doesn't sound like the PANDAS situations I'm personally aware of.

I now this may not be the response you were hoping for. There are other

PANDAS moms in this forum, so they may have different experiences/opinions.

I have no medical background, so this is only my opinion. I hope others

chime in if they have other information...

How is your daughter doing on her medications? Is she seeing a therapist?

>

In June thing went down very fast, in two weeks she was showering all

> night and during day she was in bed not able to touch anything.

>

it took her 8 month to be able to go for blood test. It

> also came negative, so doctor told us that it is definitely not PANDA. But

I

> am still not sure because my mother and my sister both had rheumatic

fever.

> And my daughter has had all these months also joint pains.

>

>

> Today she complained about sore throat. And I don't know what to do. If to

> go for throat test and give her antibiotics if it is strep infection, or I

> shouldn't give her antibiotics and watch if her OCD is going to be worse

in

> couple weeks to see if it is PANDA.

>

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09:55:00