RE: How do you test for PANDAS?

February 12, 2010

Do both. But don't rule out PANDAS if neither is positive. ASO and Anti

d-nase.

From:

[mailto: ] On Behalf Of cheryl8882000

Sent: Friday, February 12, 2010 8:34 PM

To:

Subject: How do you test for PANDAS?

Hi there,

I am fairly new and have requested my doctor to test my 8 year old son for

PANDAS because he had Scarlet Fever at age 3, around the time he began to

exhibit high anxiety/OCD type behavior.

His response today is:

" HI,

Happy to check for strep.

Did you want us to do a strep swab of his throat?

That will detect active strep and can pick up some carrier states.

There is also a blood test called an ASO titer. That is used for active

strep infection usually. "

Can anyone here that is experienced with this topic advise how to answer? I

am not sure why he is asking my opinion when he is the doctor, but at least

he is cooperating!

Thank you!

February 13, 2010

Yes, you should have a throat swab done - both a rapid and a lab culture

(ideally the lab will grow the culture for 72 hrs but not all doctors/labs offer

this - ask for the longest time frame you can get). Make sure the nurse swabs

the tonsils, not the middle of the throat.

That's step one - to rule out an obvious strep infection in the throat. But

strep can also be in the adenoids, ears, sinuses, gut, skin, perianal area,

gut...

So to check for signs the body is producing antibodies to strep, you ask for

both an ASO AND an anti-D Nase B titer test. The ASO levels rise shortly after

infection (1-3 weeks generally). The anti-DNase B levels rise more slowly (3-6

weeks post infection). In " general " , having elevated titer levels shows your

child's body is trying to fight an infection and will give the doctor a reason

to prescribe antibiotics (augmentin and azithromicin are most commonly used).

But two caveats - 37% of kids don't produce " normal " rises in titers. So a

" negative " titer level can't rule out PANDAS. But a " positive " titer level only

means there's been a recent infection. It doesn't " prove " PANDAS - it can only

give you one piece of the puzzle.

You can also ask for a nasal swab and culture or a perianal swab, plus a check

for ear infection.

PANDAS symptoms wane once the body is cleared of infection. So if you're

suspecting that your son may have an undiagnosed infection, the titer levels

might help you argue for antibiotics and by eradicating the infection, you

should start to see an improvement in symptoms.

Your pediatrician can also look for choreiform movements in a neurological exam

- there might be a milk-maids grip and/or piano playing of the fingers or toes -

but the arms have to be kept in a stressed position for several minutes for this

to show. It's not the traditional quickie exam.

If you get positive indications from the titers or piano playing, you might be

able to argue for a short course of prednisone. In healthy kids, prednisone

would make them hyper. In PANDAS kids, it reduces their symptoms by halting the

inflammation of the basal ganglia. But once the prednisone is stopped, the

improvements will only last if the infection has been eradicted. If it's still

hiding somewhere, the symptoms will come back.

Finally, if you feel you have a good clinical case for PANDAS, you can have a

blood test at the Univ of OK that checks for an enzyme (CaM Kinase II) that

strongly suggests PANDAS. But the test is $400 out of pocket and not covered by

insurance. So you'd want to explore other options first. I can send you details

if you go this route.

I just want to clarify one thing. If you're thinking PANDAS because of an

illness 5 years ago but good health since then, that's not how PANDAS works.

PANDAS symptoms come and go directly with an infection (either infection in the

child or exposure to someone who has strep). It's an autoimmune response to the

current/recent presence of bacetria. But if you're thinking your son may have

an undiagnosed infection now that's triggering a significant increase in his

OCD, then you're right to try to find the source and treat medically.

Best wishes,

February 13, 2010

I forgot to mention - you should also consider testing the whole family for

strep - carriers are people who have a strep infection but don't show symptoms.

Your son could be a carrier (which is why you'd do the titer tests and swabs of

other body areas) or someone he's in frequent contact with could be a carrier.

As long as there's an infection in close proximity, PANDAS would be exacerbated

and explains why some kids, even on antibitoics, show PANDAS symptoms. You need

to get rid of the source.

Also check for secondary symptoms to support PANDAS or not - tics, urinary urges

or bedwetting, poor handwriting, trouble with math or changes in cognitive

abilities, sensory defensiveness, age-regression (acting 2/3 his age, baby

talk), mood swings, rages, separation anxiety, anorexia, attention problems,

fidgetiness, hyperactivity).

It isn't the presence of any one thing, but more the presence of several of

these things at the same time that makes PANDAS different from traditional forms

of OCD, Tourettes, ADHD etc.

February 13, 2010

Thank you for your responses. This gives me a different picture. He did get

Scarlet Fever at age 3, and while I don't recall an overnight change, we do

recall around 3 is when he exhibited the first of many irrational fears.

We have only seen the intake doctor, and will next see a psychiatrist for

further evaluation.

He is now 8 years old and is constantly coping with excessive fears that

transfer from one thing to another over a given period of time. There will be a

part of him that, in a normal state, can recognize everything is okay, but when

he is in the fear, he cannot be reasoned with and is just terrified.

To cope, he has begun small rituals of counting affirmations, or going pee over

and over, or asking for confirmation over and over. Mostly at night it's the

worst, but now going to school is becoming an issue for various reasons he

starts to focus on.

On one hand, he is very well liked, and you wouldn't even know this about him

from the outside. He is embarrassed and hides it as much as he can, but lately

it's starting to affect him more and more. He'll just avoid certain situations

to avoid being exposed.

This week he couldn't be convinced that his school assembly wasn't an over night

trip, and he had to sit outside of school until he could get past the panic.

Yesterday he panicked when he got this idea that he would be the only one

bringing heart shaped Valentines.

They range from fear of sleepwalking, astroids, rental cars, homeless people,

kidnapping, being forgotten, frogs. I can tell him over and over that we locked

the doors, or that I won't leave the house, or that an astroid won't come down,

or that his school assembly isn't an overnight trip. It's like a big blind spot.

I don't know if fears can be an OCD? Obviously I have lots of questions.

But coming back to the PANDAS I don't see any illnesses that make it worse.

Mostly transitions. I don't know if he could have an infection for that long? It

doesn't sound like it.

But this forum is helpful in not feeling quite so alone in dealing with the

behaviors. Thanks for letting me vent.

February 13, 2010

Fears can absolutely be part of OCD. OCD is a worry disease.

On one hand, three is awfully young for traditional OCD. Average age of onset

for PANDAS is 5-7, for traditional OCD it's about 3 years older than that. And

the urination issues strike a chord. But it's hard to tell.

I think a rapid and cultured throat swab and an anti-D Nase B titer blood test

are inexpensive and minor tests that would at least give you more medical

information. It won't hurt and you can continue to therapy treatment options at

the same time. I would also check for piano playing. These are easy tests and it

would be foolish to not do them.

I would also recommend ERP therapy and some books to help your son understand

what's happening. What to Do when Your Brain Gets Stuck is an excellent starting

point. ERP is hard work, but done right, it can make a big difference in the way

your son sees things. It changes him from a victim to empowered.

>

> Thank you for your responses. This gives me a different picture. He did get

Scarlet Fever at age 3, and while I don't recall an overnight change, we do

recall around 3 is when he exhibited the first of many irrational fears.

>

> We have only seen the intake doctor, and will next see a psychiatrist for

further evaluation.

>

> He is now 8 years old and is constantly coping with excessive fears that

transfer from one thing to another over a given period of time. There will be a

part of him that, in a normal state, can recognize everything is okay, but when

he is in the fear, he cannot be reasoned with and is just terrified.

>

> To cope, he has begun small rituals of counting affirmations, or going pee

over and over, or asking for confirmation over and over. Mostly at night it's

the worst, but now going to school is becoming an issue for various reasons he

starts to focus on.

>

> On one hand, he is very well liked, and you wouldn't even know this about him

from the outside. He is embarrassed and hides it as much as he can, but lately

it's starting to affect him more and more. He'll just avoid certain situations

to avoid being exposed.

>

> This week he couldn't be convinced that his school assembly wasn't an over

night trip, and he had to sit outside of school until he could get past the

panic. Yesterday he panicked when he got this idea that he would be the only one

bringing heart shaped Valentines.

>

> They range from fear of sleepwalking, astroids, rental cars, homeless people,

kidnapping, being forgotten, frogs. I can tell him over and over that we locked

the doors, or that I won't leave the house, or that an astroid won't come down,

or that his school assembly isn't an overnight trip. It's like a big blind spot.

>

> I don't know if fears can be an OCD? Obviously I have lots of questions.

>

> But coming back to the PANDAS I don't see any illnesses that make it worse.

Mostly transitions. I don't know if he could have an infection for that long? It

doesn't sound like it.

>

> But this forum is helpful in not feeling quite so alone in dealing with the

behaviors. Thanks for letting me vent.

>

February 13, 2010

Okay, thank you. I will definitely get the tests. I agree that three is awfully

young, and at that time figured his temperament is that of a worrier. It's only

looking back that I realize it must all be connected.

He would play normally, totally fine, and then remember he was afraid and climb

on the back of the couch and sit there for a long period of time. Half hour,

hour. Then he'd forget and start playing again.

And I'd think " who's to say if that's normal " and let it go. Because in all

other areas, motor skills, speech, disposition. He has always been totally smart

and happy, in between bouts of fear.

And this is a kid who doesn't watch t.v., and only an occasional movie because

we don't choose t.v. in our home. So it's not like he's been exposed to the

nightly news or scary movies, you see?

It's amazing the denial I have been in for so long. Knowing he was fearful, but

never really seeing it as a possible disorder of some sorts.

Part of this for me is sort of relief of the time spent blaming our parenting

and wondering where we are going wrong. But realizing it is more out of our

control than we realized is also very sad.

I am here for advice, and then I am here processing my own realization of the

situation we have been dealing with for years.

It's like I took a hood off and I am seeing the world differently. Good and bad.

Thanks again.

February 14, 2010

Hi,

My son is now 8. He sounds very much like your son. He was fine until he was

almost 5. He had strep about three weeks prior to his onset of overnight

symptoms. He has PANDAS. He was just diagnosed about a month or so ago.

A childÂ Â can have an infection that long.

Than again,, your son could just have " regular OCD " , because in most cases of

PANDAS you notice a completely different child overnight. I can remember the

exact day and time this started with my son. He was one way, and I swear, he

woke up a different kid.

My daughter is 13 and was diagnosed with OCD at age 5.Although it seemed like

her intrusive thoughts and rages appeared out of nowhere,Â she does not have

PANDAS,.

She had scarlet fever also, but did not have an over night abrupt onset of ocd

symptoms. It was more gradual.

If you have never seen a PANDAS child it is very difficult to distinguish

between what is an abrupt overnight change, versus a child who has bad thoughts,

etc, etc, that appears to happen all at once, but it's not a complete change

overnight.( sorry, If I sound confusing, but it is hard to explain unless you

are seeing it) .

I guess for me, it's because I have the two with ocd, and one has the

PANDAS.(It's just completely different at the onset)

Before IÂ saw my son's onset,Â I would have thought my daughters onset was

overnight, but after seeing my son, I realized it wasn't.

Just some quick thoughts

Hope this helps some

Hugs