pandas

[Guest guest]

I'm not too well-versed on PANDAS, but I would recommend trying to find a

neurologist or other specialist in your area who is very familiar with it. Much

like Lyme, PANDAS is somewhat controversial in the medical community—some

doctors are wholeheartedly behind the concept, others are not.

I'm sure there are some on the list here with PANDAS kids, as sudden OCD onset

is one of the big red flags. My son had an initial " titer, " for PANDAS, but from

what I understand there are a lot of other tests that can be done to rule it in

or out.

The key is finding the right doctor who specializes in diagnosing/treating

PANDAS. There's a lot of stuff online about PANDAS and if you check the files

here in the group, I'm sure there is info there as well.

>

> How do I go about getting my child tested/evaluated for PANDAS? Would a

> regular blood test show the results?

>

>

[Guest guest]

I'm not too well-versed on PANDAS, but I would recommend trying to find a

neurologist or other specialist in your area who is very familiar with it. Much

like Lyme, PANDAS is somewhat controversial in the medical community—some

doctors are wholeheartedly behind the concept, others are not.

I'm sure there are some on the list here with PANDAS kids, as sudden OCD onset

is one of the big red flags. My son had an initial " titer, " for PANDAS, but from

what I understand there are a lot of other tests that can be done to rule it in

or out.

The key is finding the right doctor who specializes in diagnosing/treating

PANDAS. There's a lot of stuff online about PANDAS and if you check the files

here in the group, I'm sure there is info there as well.

>

> How do I go about getting my child tested/evaluated for PANDAS? Would a

> regular blood test show the results?

>

>

[Guest guest]

Hi, welcome! In our group's FILES section there is a PANDAS folder. Look for

the document that starts with " new members " and it has some info for you.

I thought of PANDAS type too when I read your sudden onset comment.

It will take bloodwork to help see if his OCD may have started due to strep or

Lyme or even other illness. Sudden onset doesn't mean it IS the PANDAS type

OCD, but you may want to rule it out for medication purposes, as PANDAS type

would perhaps change the medication part. The Therapy will still be the same,

no matter why OCD began.

Quick thoughts,

>

>

> How do I go about getting my child tested/evaluated for PANDAS? Would a

> regular blood test show the results?

>

[Guest guest]

Hi,

As mentioned, there is a lot of info in files section. I am going to point

you to one recent article, however, that I think is a good summary of symptoms,

diagnosis and treatment options. I think it's important for both you and your

child's doctor to know that strep is not the only cause, but is a good place to

start looking. If results of cultures and blood tests are negative, keep looking

for other things. We started with strep. Eventually, we found Lyme and

Bartonella (another tick born disease known to cause neuropsych symptoms).

I also agree with the other poster about seeing a knowledgeable doctor. They are

pretty few and far between. Most are on the east coast, one in Chicago. I don't

think it has to be a neurologist, though. PANDAS/PANS is an immunological

disorder. We see an immunologist and a Lyme Doctor. The most important thing is

not the type of doctor, but whether they have LOTS of experience treating

PANDAS/PANS kids. By lots, I mean hundreds or even thousands, not a couple here

and there.

As far a therapy, I've no experience with the type you mentioned. My

understanding is CBT/ERP is the gold standard for OCD and that you need a

therapist that is trained in how to do that. One caveat about therapy though, is

that it may not be that effective with PANDAS kids until the infection is

actually being treated. I think it is still important to do, regardless. We

found that therapy helped only a little. My dd would overcome one fear, only to

have it replaced by another (or several others). The list just grew longer and

longer. However, after we started treating with antibiotics, as she overcame one

thing, others went away as well.

I encourage you to read this article and am happy to help in any other way on or

off line.

http://ocfoundation.org/EO_PANDAS.aspx

The only thing I don't like about this article is that it does not emphasize

motor and vocal tics. For lots of PANS kids, this is a major symptom as opposed

to the OCD. For many of the PANS docs the diagnosis criteria is sudden onset of

either OCD and/or tics, then a combination of a few of the " minor " symptoms

(i.e. emotional lability, adhd like behavior, deterioration in fine and/or gross

motor skills, etc.)

Kara

>

>

> How do I go about getting my child tested/evaluated for PANDAS? Would a

> regular blood test show the results?

>

[Guest guest]

Hi,

As mentioned, there is a lot of info in files section. I am going to point

you to one recent article, however, that I think is a good summary of symptoms,

diagnosis and treatment options. I think it's important for both you and your

child's doctor to know that strep is not the only cause, but is a good place to

start looking. If results of cultures and blood tests are negative, keep looking

for other things. We started with strep. Eventually, we found Lyme and

Bartonella (another tick born disease known to cause neuropsych symptoms).

I also agree with the other poster about seeing a knowledgeable doctor. They are

pretty few and far between. Most are on the east coast, one in Chicago. I don't

think it has to be a neurologist, though. PANDAS/PANS is an immunological

disorder. We see an immunologist and a Lyme Doctor. The most important thing is

not the type of doctor, but whether they have LOTS of experience treating

PANDAS/PANS kids. By lots, I mean hundreds or even thousands, not a couple here

and there.

As far a therapy, I've no experience with the type you mentioned. My

understanding is CBT/ERP is the gold standard for OCD and that you need a

therapist that is trained in how to do that. One caveat about therapy though, is

that it may not be that effective with PANDAS kids until the infection is

actually being treated. I think it is still important to do, regardless. We

found that therapy helped only a little. My dd would overcome one fear, only to

have it replaced by another (or several others). The list just grew longer and

longer. However, after we started treating with antibiotics, as she overcame one

thing, others went away as well.

I encourage you to read this article and am happy to help in any other way on or

off line.

http://ocfoundation.org/EO_PANDAS.aspx

The only thing I don't like about this article is that it does not emphasize

motor and vocal tics. For lots of PANS kids, this is a major symptom as opposed

to the OCD. For many of the PANS docs the diagnosis criteria is sudden onset of

either OCD and/or tics, then a combination of a few of the " minor " symptoms

(i.e. emotional lability, adhd like behavior, deterioration in fine and/or gross

motor skills, etc.)

Kara

>

>

> How do I go about getting my child tested/evaluated for PANDAS? Would a

> regular blood test show the results?

>

[Guest guest]

I am new to this group I have son who is 8 yrs. and has OCD, Ticks,

Eosinophilic Esophagitis, anxiety and gets irritates quite often. I see Pandas

on this link a lot but always thought is was an alternative treatment or

therapy. Kinda wish I new more about it. I did some google searches and found

out a little about Strep. My son gets strep every year and Amoxacillin does not

get rid of it. Just wondering if someone can give me some advice or tips. He

had it three weeks ago and they gave him Amox. and three week later I noticed

his ticks and OCD get worse. He may have had influenza also. The entire family

got Influenza and he was the only one with strep. Does this mean there is

permanent issues with OCD if it is Panda? Is there a link I can go to and get

more info? Thanks in advance!

[Guest guest]

Hi , we have information in our FILES section in the PANDAS folder, you

may find some of that helpful. The OCD Foundation website also has information

on it.

I'm not a " PANDAS parent " but Zithromax is probably much better than

Amoxicillin, don't the the amox will help the OCD if it's PANDAS. Sometimes

with the PANDAS type, you may find that after good treatment for the strep, the

OC behaviors calm down a lot; but then spike again with new exposure to strep or

even other illnesses.

Yes, the primary difference, I think, between the PANDAS type OCD and non-PANDAS

is that you will use antibiotics to treat. Some find that they need a longer

duration of the antibiotics too. I hope you see some improvement with your son

on the Zith! Also at some point, many still need a low dose of an SSRI med to

treat the OCD, just like non-PANDAS caused OCD does. So it's really just a

matter of seeking treatment for the PANDAS first and see how well that goes, and

then eventually you may find he needs a bit more help with an SSRI; but maybe

not!!

And for any OCD, whatever the cause, their learning about what OCD is and the

therapy for OCD (Cognitive Behavioral Therapy with Exposure & Response

Prevention = CBT with ERP) is still needed; the therapy is the same for all.

I don't think you'd need a blood test since you know he has strep now. But

maybe - and experienced PANDAS parents could say - in a few weeks after the

strep is, hopefully treated and gone, you may want one to have them check the

titres to see if they are still high if the OCD hasn't improved any.

Just some quick thoughts. A good group forum with PANDAS information is:

http://www.latitudes.org/forums/index.php?showforum=17

Hope this helps,

>

>

> This is very informative thanks. I had our son tested today and yes he does

have strep. so we are getting antibiotics. Zithromax I believe? Is this a

good one? I don't really understand the rheumatic fever part and when treated

for pandas what is so different? other than antibiotics? Should we have a

blood test done too? What difference will that make? The dr. said he could be

a carrier of strep? anti biotic prophylaxis not sure what this means? Is there

any way of finding out if there are doctors in our area with pandas knowledge?

Also, the heart damage has me worried but don't really understand? Thanks

[Guest guest]

Thank you so much for all your input! he is now on Zithromax and I am seeing

less tics and OCD. We will retest him in 10 days. In the mean time the rest of

us are going to get a swab test. I would hate to give strep to other family

members. Thank you for the websites .

> >

> >

> > This is very informative thanks. I had our son tested today and yes he does

have strep. so we are getting antibiotics. Zithromax I believe? Is this a

good one? I don't really understand the rheumatic fever part and when treated

for pandas what is so different? other than antibiotics? Should we have a

blood test done too? What difference will that make? The dr. said he could be

a carrier of strep? anti biotic prophylaxis not sure what this means? Is there

any way of finding out if there are doctors in our area with pandas knowledge?

Also, the heart damage has me worried but don't really understand? Thanks

>