What testing should we ask for? (Initial PANS workup)

[Guest guest]

My daughter (6yrs) suddenly developed OCD and extreme behavior problems and

sleep problems in May. We strongly suspect PANDAS/PANS. She has been on

amoxicillin for 2 weeks and has had trememdous improvement. She has had ASO

titers and Anti-DNAse (?) titers checked in the first 2 wks plus throat swab.

Everything is negative and as far as we know she has never had strep. She did

have a severe illness in February after coming home from Disney World with lots

of pus in her throat. Her rapid strep was positive at that time, but the

culture did not grow so she was not treated with antibiotics. We saw a pediatric

neurologist last week who isn't convinced that is what she has because of the

absence of any strep proof. She is doing an MRI next week and will test for

Mycoplasma, ANA screen with reflex, TSH, T4 and T3. Is there anything else I

should really push for in this initial workup? I know there's a ton of things

that can be checked, but what is most important? My brain is completely shot

from dealing with this and reading about it for the last month. We discussed

lyme with the neuro, but it isn't common in this area, apparently, and she

hasn't had a tick bite in at least a year. Should I ask for bartonella? If

anyone has a clearer head and grasp of this I would really appreciate some

advice.

Misty

[Guest guest]

IgA and igg levels. Do the Lyme anyway.

Sent from my iPhone

On Jun 26, 2012, at 5:11 PM, " thrifty_al_mama "

wrote:

> My daughter (6yrs) suddenly developed OCD and extreme behavior problems and

sleep problems in May. We strongly suspect PANDAS/PANS. She has been on

amoxicillin for 2 weeks and has had trememdous improvement. She has had ASO

titers and Anti-DNAse (?) titers checked in the first 2 wks plus throat swab.

Everything is negative and as far as we know she has never had strep. She did

have a severe illness in February after coming home from Disney World with lots

of pus in her throat. Her rapid strep was positive at that time, but the culture

did not grow so she was not treated with antibiotics. We saw a pediatric

neurologist last week who isn't convinced that is what she has because of the

absence of any strep proof. She is doing an MRI next week and will test for

Mycoplasma, ANA screen with reflex, TSH, T4 and T3. Is there anything else I

should really push for in this initial workup? I know there's a ton of things

that can be checked, but what is most important? My brain is completely shot

from dealing with this and reading about it for the last month. We discussed

lyme with the neuro, but it isn't common in this area, apparently, and she

hasn't had a tick bite in at least a year. Should I ask for bartonella? If

anyone has a clearer head and grasp of this I would really appreciate some

advice.

>

> Misty

>

>

[Guest guest]

Misty,

I just emailed you a copy of the bloodwork order that our PANDAS doctor ordered

for our daughter at her initial visit.

I agree with the other post to test for Lyme anyway. And while your at it, test

for the Lyme co-infections: Bartonella, Ehrlichiosis, Babesiosis, Ricksettia...

The co-infections are not on the order I sent. We did those later through

IgeneX. It sounds like you have pulled a tick off of her in the past, so these

are all possibilities. I don't ever remember finding a tick on either of my

children, but they both ended up with Lyme. And my daughter, the one with the

OCD, clearly tested positive for Bartonella. If I were in your shoes and you

know that she was bitten by a tick at some point in the past (no matter how long

ago), I would push for these tests.

If/when you ask for the Lyme Western Blot, make sure to request that the results

be given back by Band, so you can see whether anything shows up on any of the

bands. Many of the labs will report a negative results if the 5 bands that the

CDC uses for surveillance purposes do not show up. But, if certain bands that

are specific to Borrelia (the bacteria that causes Lyme) show up, then it

indicates exposure. A Lyme Literate doctor would consider results positive if

these specific bands show up and a patient is exhibiting symptoms (which your

daughter is). I know this is confusing. Don't really try to figure it out now,

just make sure you get detailed results and that you look at them more closely

yourself (with a little more education then) if the doctor just says they are

negative.

I'm confused about the strep results. You said her rapid strep was positive.

That would indicate PANDAS possiblity to me. Also, the ASO and Anti DNase B

titers should be measure more than once, so you can see whether they are rising

or falling. Keep in mind thought, that not all people get a rise in titers, even

if they have strep.

I hope this helps.

Kara

>

> My daughter (6yrs) suddenly developed OCD and extreme behavior problems and

sleep problems in May. We strongly suspect PANDAS/PANS. She has been on

amoxicillin for 2 weeks and has had trememdous improvement. She has had ASO

titers and Anti-DNAse (?) titers checked in the first 2 wks plus throat swab.

Everything is negative and as far as we know she has never had strep. She did

have a severe illness in February after coming home from Disney World with lots

of pus in her throat. Her rapid strep was positive at that time, but the

culture did not grow so she was not treated with antibiotics. We saw a pediatric

neurologist last week who isn't convinced that is what she has because of the

absence of any strep proof. She is doing an MRI next week and will test for

Mycoplasma, ANA screen with reflex, TSH, T4 and T3. Is there anything else I

should really push for in this initial workup? I know there's a ton of things

that can be checked, but what is most important? My brain is completely shot

from dealing with this and reading about it for the last month. We discussed

lyme with the neuro, but it isn't common in this area, apparently, and she

hasn't had a tick bite in at least a year. Should I ask for bartonella? If

anyone has a clearer head and grasp of this I would really appreciate some

advice.

>

> Misty

>

[Guest guest]

Thanks for the thorough info, Kara! From what I’ve read, Bartonella can come

from mosquitos and cat scratches, too. I haven’t read anything about the

other things. I wish I could find an immunologist who is PANDAS friendly.

I’ve checked with two and neither had ever dealt with it. I may have to check

with the nearest Children’s Hospital and see if the are willing to

investigate. I can’t remember for sure, but I think she has had a tick bite in

the past.

On the strep stuff.. We saw a different pediatrician who thought the positive

rapid strep was very compelling because those can have a false negative on the

culture about 10% of the time (according to him). I think it would be a lot

easier to get doctors to dig deeper for us if the strep stuff was more obvious.

I haven’t asked her pediatrician (the one who hasn’t been very accepting of

PANDAS) to repeat the strep titers yet. I am considering making an appt to

confront him face to face. He filters everything through his nurse, so I

don’t know how much info is actually making it to him. My daughter’s

symptoms got far, far worse after we’d seen him the last time, which is why we

saw the different pediatrician – ours was on vacation when she was at her

worst. I think if I could tell him face to face every symptom that Abby has

cycled through he would be more willing to investigate. I tried to point out to

the neurologist (on info that I printed from the internet) that elevated strep

titers are not absolutely necessary for a PANDAS diagnosis. She just kind of

brushed it off and said we just needed to put her on Zoloft. My position is

that I want to treat the cause of this as much as possible before just throwing

something at the OCD.

From: Kara

Sent: Wednesday, June 27, 2012 7:17 AM

To:

Subject: Re: What testing should we ask for? (Initial PANS

workup)

Misty,

I just emailed you a copy of the bloodwork order that our PANDAS doctor ordered

for our daughter at her initial visit.

I agree with the other post to test for Lyme anyway. And while your at it, test

for the Lyme co-infections: Bartonella, Ehrlichiosis, Babesiosis, Ricksettia...

The co-infections are not on the order I sent. We did those later through

IgeneX. It sounds like you have pulled a tick off of her in the past, so these

are all possibilities. I don't ever remember finding a tick on either of my

children, but they both ended up with Lyme. And my daughter, the one with the

OCD, clearly tested positive for Bartonella. If I were in your shoes and you

know that she was bitten by a tick at some point in the past (no matter how long

ago), I would push for these tests.

If/when you ask for the Lyme Western Blot, make sure to request that the results

be given back by Band, so you can see whether anything shows up on any of the

bands. Many of the labs will report a negative results if the 5 bands that the

CDC uses for surveillance purposes do not show up. But, if certain bands that

are specific to Borrelia (the bacteria that causes Lyme) show up, then it

indicates exposure. A Lyme Literate doctor would consider results positive if

these specific bands show up and a patient is exhibiting symptoms (which your

daughter is). I know this is confusing. Don't really try to figure it out now,

just make sure you get detailed results and that you look at them more closely

yourself (with a little more education then) if the doctor just says they are

negative.

I'm confused about the strep results. You said her rapid strep was positive.

That would indicate PANDAS possiblity to me. Also, the ASO and Anti DNase B

titers should be measure more than once, so you can see whether they are rising

or falling. Keep in mind thought, that not all people get a rise in titers, even

if they have strep.

I hope this helps.

Kara

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[Guest guest]

I’m in North Alabama. I’ve looked at a few doctor lists and have only

found one within 2 hours drive. That one is a pediatrician. I need to double

check the ones you listed. I don’t think I’ve seen anything on latitudes

yet. She is really, really bad again today. She’s been a little worse each

day this week.

From: Kara

Sent: Thursday, June 28, 2012 7:20 AM

To:

Subject: Re: What testing should we ask for? (Initial PANS

workup)

Sorry if you've mentioned this already...but what part of the country do you

live in?

You can check with pandasresourcenetwork.org or pandasnetwork.org to see if they

have any doctors listed near you that are PANDAS friendly.

Also, the forum on latitudes.org has a list and you can connect with people in

your area to find out what their experiences with local docs have been like.

Kara