Re: Doctor specialty for PANDAS/PANS testing

[Guest guest]

Have u gone to pandas network online? They

Have a list of doctors in different parts of the country.

Sent from my iPhone

> Our pediatrician has done some testing, but he was resistant and I had to tell

him I'd go somewhere else if he didn't. So far, nothing has shown up for strep.

What type of doctor should I seek out for further testing?

>

> Misty

>

>

[Guest guest]

Have u gone to pandas network online? They

Have a list of doctors in different parts of the country.

Sent from my iPhone

> Our pediatrician has done some testing, but he was resistant and I had to tell

him I'd go somewhere else if he didn't. So far, nothing has shown up for strep.

What type of doctor should I seek out for further testing?

>

> Misty

>

>

[Guest guest]

I didn’t see that...I have looked at their site. I’ll go look for the

doctor list. Thanks!

From: Debbie

Sent: Monday, June 04, 2012 3:34 PM

To:

Subject: Re: Doctor specialty for PANDAS/PANS testing

Have u gone to pandas network online? They

Have a list of doctors in different parts of the country.

Sent from my iPhone

On Jun 4, 2012, at 1:05 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> Our pediatrician has done some testing, but he was resistant and I had to tell

him I'd go somewhere else if he didn't. So far, nothing has shown up for strep.

What type of doctor should I seek out for further testing?

>

> Misty

>

>

[Guest guest]

I didn’t see that...I have looked at their site. I’ll go look for the

doctor list. Thanks!

From: Debbie

Sent: Monday, June 04, 2012 3:34 PM

To:

Subject: Re: Doctor specialty for PANDAS/PANS testing

Have u gone to pandas network online? They

Have a list of doctors in different parts of the country.

Sent from my iPhone

On Jun 4, 2012, at 1:05 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> Our pediatrician has done some testing, but he was resistant and I had to tell

him I'd go somewhere else if he didn't. So far, nothing has shown up for strep.

What type of doctor should I seek out for further testing?

>

> Misty

>

>

[Guest guest]

I totally understand what you mean. My pediatrician really seems to

compartmentalize each problem to that body system instead of seeing a whole

body problem. The celiac issue is intriguing. My daughter's problem started

with stomach complaints and a refusal to lie down flat. I am going to look

into that more. Thanks for sharing your experience with me. I wondered

about the doctor lists...if the doctor was as accepting as you would hope

after seeing them on a list.

Re: Doctor specialty for PANDAS/PANS testing

Not sure I can offer any help but thought I'd share a recent experience we

had in finding a doctor. My daughter (now 10) has had many of the symptoms

of PANDAS for a few years. They started shortly after a strep infection

followed by a tick bite a few months later. The first time I mentioned

PANDAS to our pediatrician, she quickly dismissed it saying that PANDAS is

rare and that we cured the strep with antibiotics. My daughter's symptoms

sometimes go away and I forget about seeking treatment. As my daughters

symptoms had worsened recently, I decided to go to a different pediatrician

in the same practice. I asked that he do bloodwork for strep and lyme

disease as well as address some worsening stomach problems. He didn't

want to put all the symptoms (physical and neurological) together. He said

she didn't have PANDAS but rather it was just anxiety and she could go on

medication for that. He said she didn't have lyme because she didn't have

chronic joint pain. I just didn't feel like we were on the same page.

I started searching all the PANDAS websites for doctors under our

insurance within driving distance. Amazingly, I found a pediatrician who

is only 15 minutes from my house and under our insurance plan so I thought

I had hit the jackpot. At our appointment I felt that I could talk freely

about PANDAS since she was listed on two of those websites. She finally

asked me where I found her name. When I told her, she said she didn't want

her name on the lists. She had treated one child who possibly had PANDAS

because his symptoms improved with penicillin. She said her name is now

out there and she can't seem to remove it. She said the P in PANDAS stands

for pediatric so it's a childhood disorder that usually goes away as kids

get older but not always. She was open to testing for strep, lyme, and

many other things. She suggested increasing allergy meds, starting

melatonin at night for sleep issues, removing wheat and dairy from the

diet, and starting probiotics and fish oil. She had never heard of

inositol and said she doesn't treat OCD. A few days later she called to

say that my daughter tested very high for celiac disease. After reading

more about the disease, I realized that much of the anxiety is caused by

the stomach problems. The separation anxiety comes from not knowing if her

stomach will hurt while I'm gone and not knowing how the people around her

will respond to her fears. I have found that a good night's sleep makes a

huge difference in attitude. My daughter still has some anxiety but

hopefully managing the celiac will help. I've also ordered inositol.

I don't know if my daughter's anxiety and OCD symptoms will worsen with

adolescence. Right now we're focusing on the celiac. I am glad that the

PANDAS websites led me to our current pediatrician, but I did feel a little

foolish once I realized that she isn't completely on board with it. She

has put us on the right path for now.

Janette

On Mon, Jun 4, 2012 at 1:05 PM, thrifty_al_mama

wrote:

> **

>

>

> Our pediatrician has done some testing, but he was resistant and I had to

> tell him I'd go somewhere else if he didn't. So far, nothing has shown up

> for strep. What type of doctor should I seek out for further testing?

>

> Misty

>

>

>

[Guest guest]

So, here's the thing about those lists. They are list of doctors that people

have found " helpful " in diagnosing their child...that were perhaps " open minded "

enough to run some testing. I am not being critical of them at all. I think they

are essential. However, you want to go to a doctor that is an expert and truly

knows how to diagnose and treat....someone that will really dig. Strep is

definitely not the only trigger. Autoimmune issues, other infections such as

mycoplasma, Lyme and other tick born illnesses...the list goes on.

There are only a handful of " experts " in the country. Most are on the east

coast... Dr Bouboulis in CT, Dr. Trifiletti. in NJ, Dr. Latimer in MD, Dr.

in FL and Dr. Kavokavic (sp?) in Chicago.

Where are you located?

Your daughter sounds like classic PANS/PANDAS/PITAND. I encourage you to make an

appointment and travel if necessary to one of those docs.

We are fortunate enough to live in MA and only have to drive 4 hours to Dr. B.

He initially thought PANDAS (Strep), but eventually found Bartonella and LYme.

We now see a LYme specialist instead of DR. B, but Dr. B. got us on the right

path.

Kara

>

> > Our pediatrician has done some testing, but he was resistant and I had to

tell him I'd go somewhere else if he didn't. So far, nothing has shown up for

strep. What type of doctor should I seek out for further testing?

> >

> > Misty

> >

> >

>

>

>

[Guest guest]

The ones in red I believe r the actual specialists

On PANDAS network. All those docs I believe

R listed that u mentioned. I will be going to

In July. My son has chronic strep we believe he

Has other triggers as well. We find out hopefully

On Thursday ( test results) when we go back

To infectious disease doc.

Sent from my iPhone

> So, here's the thing about those lists. They are list of doctors that people

have found " helpful " in diagnosing their child...that were perhaps " open minded "

enough to run some testing. I am not being critical of them at all. I think they

are essential. However, you want to go to a doctor that is an expert and truly

knows how to diagnose and treat....someone that will really dig. Strep is

definitely not the only trigger. Autoimmune issues, other infections such as

mycoplasma, Lyme and other tick born illnesses...the list goes on.

>

> There are only a handful of " experts " in the country. Most are on the east

coast... Dr Bouboulis in CT, Dr. Trifiletti. in NJ, Dr. Latimer in MD, Dr.

in FL and Dr. Kavokavic (sp?) in Chicago.

>

> Where are you located?

>

> Your daughter sounds like classic PANS/PANDAS/PITAND. I encourage you to make

an appointment and travel if necessary to one of those docs.

>

> We are fortunate enough to live in MA and only have to drive 4 hours to Dr. B.

He initially thought PANDAS (Strep), but eventually found Bartonella and LYme.

We now see a LYme specialist instead of DR. B, but Dr. B. got us on the right

path.

>

> Kara

>

>

> >

> > > Our pediatrician has done some testing, but he was resistant and I had to

tell him I'd go somewhere else if he didn't. So far, nothing has shown up for

strep. What type of doctor should I seek out for further testing?

> > >

> > > Misty

> > >

> > >

> >

> >

> >

[Guest guest]

This all goes along with the whole " gut- psycology syndrome " thing. It is

fascinating. I am quite certain our son has gluten intolerance but he will not

follow a gluten free diet ( he is almost 16). I think if you fix the gut, you

often fix the mind. I am gluten free and feel so much better now form a joint

pain standpoint.

[Guest guest]

Thank you Kara. It is really unbelievable how strongly she matches up with the

list of symptoms. Today she added tics to her symptom list. I am really getting

more fired up to travel, if necessary. Have you had improvements since you

found the cause for your child?

From: Kara

Sent: Tuesday, June 05, 2012 6:04 AM

To:

Subject: Re: Doctor specialty for PANDAS/PANS testing

So, here's the thing about those lists. They are list of doctors that people

have found " helpful " in diagnosing their child...that were perhaps " open minded "

enough to run some testing. I am not being critical of them at all. I think they

are essential. However, you want to go to a doctor that is an expert and truly

knows how to diagnose and treat....someone that will really dig. Strep is

definitely not the only trigger. Autoimmune issues, other infections such as

mycoplasma, Lyme and other tick born illnesses...the list goes on.

There are only a handful of " experts " in the country. Most are on the east

coast... Dr Bouboulis in CT, Dr. Trifiletti. in NJ, Dr. Latimer in MD, Dr.

in FL and Dr. Kavokavic (sp?) in Chicago.

Where are you located?

Your daughter sounds like classic PANS/PANDAS/PITAND. I encourage you to make an

appointment and travel if necessary to one of those docs.

We are fortunate enough to live in MA and only have to drive 4 hours to Dr. B.

He initially thought PANDAS (Strep), but eventually found Bartonella and LYme.

We now see a LYme specialist instead of DR. B, but Dr. B. got us on the right

path.

Kara

>

> > Our pediatrician has done some testing, but he was resistant and I had to

tell him I'd go somewhere else if he didn't. So far, nothing has shown up for

strep. What type of doctor should I seek out for further testing?

> >

> > Misty

> >

> >

>

>

>

[Guest guest]

Thank you Kara. It is really unbelievable how strongly she matches up with the

list of symptoms. Today she added tics to her symptom list. I am really getting

more fired up to travel, if necessary. Have you had improvements since you

found the cause for your child?

From: Kara

Sent: Tuesday, June 05, 2012 6:04 AM

To:

Subject: Re: Doctor specialty for PANDAS/PANS testing

So, here's the thing about those lists. They are list of doctors that people

have found " helpful " in diagnosing their child...that were perhaps " open minded "

enough to run some testing. I am not being critical of them at all. I think they

are essential. However, you want to go to a doctor that is an expert and truly

knows how to diagnose and treat....someone that will really dig. Strep is

definitely not the only trigger. Autoimmune issues, other infections such as

mycoplasma, Lyme and other tick born illnesses...the list goes on.

There are only a handful of " experts " in the country. Most are on the east

coast... Dr Bouboulis in CT, Dr. Trifiletti. in NJ, Dr. Latimer in MD, Dr.

in FL and Dr. Kavokavic (sp?) in Chicago.

Where are you located?

Your daughter sounds like classic PANS/PANDAS/PITAND. I encourage you to make an

appointment and travel if necessary to one of those docs.

We are fortunate enough to live in MA and only have to drive 4 hours to Dr. B.

He initially thought PANDAS (Strep), but eventually found Bartonella and LYme.

We now see a LYme specialist instead of DR. B, but Dr. B. got us on the right

path.

Kara

>

> > Our pediatrician has done some testing, but he was resistant and I had to

tell him I'd go somewhere else if he didn't. So far, nothing has shown up for

strep. What type of doctor should I seek out for further testing?

> >

> > Misty

> >

> >

>

>

>

[Guest guest]

My dd is doing really well right now...so close to 100%. Of course every time I

say that it seems it comes back to bite me...but the bites get smaller every

time (little nips now).

It seems like it's been a slow process with ups an downs. But the trend has been

steady improvement. It took a couple of months to go from debilatating

OCD/rages, etc. to tolerable...a few more months to get to 80 or 90% better. I

feel like the last six months or so we are just working on the final 5%.

In total, since we started treating for PANDAS, it's been a little over two

years. A little over a year since we started the LYme and Bartonella.

If you have/can find a cooperative pediatrician to run lots of test before

seeing Dr., you will save yourself some time and possibly an additional

trip (i.e. first trip where she tests, second trip to go over results). If you

can have results before the first visit, you can go over those then.

You could ask if there are standard tests she runs so you can get those done

first...if they won't tell you, I can tell you what Dr. B ran for us. Their

lists are probably relatively similar.

Kara

>

> Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

>

>

[Guest guest]

My dd is doing really well right now...so close to 100%. Of course every time I

say that it seems it comes back to bite me...but the bites get smaller every

time (little nips now).

It seems like it's been a slow process with ups an downs. But the trend has been

steady improvement. It took a couple of months to go from debilatating

OCD/rages, etc. to tolerable...a few more months to get to 80 or 90% better. I

feel like the last six months or so we are just working on the final 5%.

In total, since we started treating for PANDAS, it's been a little over two

years. A little over a year since we started the LYme and Bartonella.

If you have/can find a cooperative pediatrician to run lots of test before

seeing Dr., you will save yourself some time and possibly an additional

trip (i.e. first trip where she tests, second trip to go over results). If you

can have results before the first visit, you can go over those then.

You could ask if there are standard tests she runs so you can get those done

first...if they won't tell you, I can tell you what Dr. B ran for us. Their

lists are probably relatively similar.

Kara

>

> Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

>

>

[Guest guest]

Hi Kara,

So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

Really good to hear your update Kara.

Warmly,

Barb

> >

> > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> >

> >

>

[Guest guest]

Hi Kara,

So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

Really good to hear your update Kara.

Warmly,

Barb

> >

> > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> >

> >

>

[Guest guest]

Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

Sent from my iPhone

> Hi Kara,

>

> So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

>

> Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

>

> Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

>

> Really good to hear your update Kara.

>

> Warmly,

> Barb

>

>

> > >

> > > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> > >

> > >

> >

>

>

[Guest guest]

Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

Sent from my iPhone

> Hi Kara,

>

> So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

>

> Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

>

> Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

>

> Really good to hear your update Kara.

>

> Warmly,

> Barb

>

>

> > >

> > > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> > >

> > >

> >

>

>

[Guest guest]

I can tell you the term for this is called " lack of insight " . It is pretty

common. Ours lacked insight for a good year, if not more. It can make it

difficult if not impossible to do ERP. Also, " overvalued ideation " (think that's

the term). They believe the thoughts are true. Also common.

On the other hand, whether she lacks insight and/or believes the thoughts are

true, or not, if she understands how ERP works you can still work on the

compulsive part to show her that working on this reduces the thoughts. So, kind

of working to " prove " the OCD is not valid. Whether you believe something or

not, if you have evidence to prove something you might see the value in doing

it, ie. ERP.

Thing is, I think most with OCD believe the thoughts to some degree,no matter

how well they are doing. That's the nature of the OCD, it will always keep them

doubting, and they have to become comfortable feeling unsure, that it might be

true. You can work on it cognitively, esp for insight, but not sure this is the

way to go with a younger child.

So, if your therapist is trying to work cognitively with your daughter about the

thoughts this might not be realistic. I don't have any experience with this,

ours was 15, but I'm thinking a younger child would do better with behavior

part. I'm wondering if ERP is actually being done. What have they worked on?

Does she have homework to work on the compulsions?

My son, who is a master of using avoidance to deal with his OCD , will tell

you that a person really does know it's OCD, but will claim not to, to avoid

having to do anything about it. Not saying this is the case with yours, I had a

teen after all, so it definitely fit. It really wasn't that simple either, ours

has scrupe type OCD, so he's pretty hard on himself.

But, I think his point was, unless they are completely out of it, they at some

level know. But they feel the need to protect the OCD, hold on/out, because

they are afraid to change and for what might happen, to feel the anxiety, etc,

etc.....no end point. So, talking about it will not take you anywhere, not

anywhere far anyway. AND talking about it usually amps up the anxiety, so they

often don't want to do that either.

Ok, that got long. I'm the master of long answers Hope there is something

useful in there. I'm sure some with younger kids and experience with this will

jump in with thoughts.

Warmly,

Barb

>

> Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

>

> Sent from my iPhone

>

[Guest guest]

I can tell you the term for this is called " lack of insight " . It is pretty

common. Ours lacked insight for a good year, if not more. It can make it

difficult if not impossible to do ERP. Also, " overvalued ideation " (think that's

the term). They believe the thoughts are true. Also common.

On the other hand, whether she lacks insight and/or believes the thoughts are

true, or not, if she understands how ERP works you can still work on the

compulsive part to show her that working on this reduces the thoughts. So, kind

of working to " prove " the OCD is not valid. Whether you believe something or

not, if you have evidence to prove something you might see the value in doing

it, ie. ERP.

Thing is, I think most with OCD believe the thoughts to some degree,no matter

how well they are doing. That's the nature of the OCD, it will always keep them

doubting, and they have to become comfortable feeling unsure, that it might be

true. You can work on it cognitively, esp for insight, but not sure this is the

way to go with a younger child.

So, if your therapist is trying to work cognitively with your daughter about the

thoughts this might not be realistic. I don't have any experience with this,

ours was 15, but I'm thinking a younger child would do better with behavior

part. I'm wondering if ERP is actually being done. What have they worked on?

Does she have homework to work on the compulsions?

My son, who is a master of using avoidance to deal with his OCD , will tell

you that a person really does know it's OCD, but will claim not to, to avoid

having to do anything about it. Not saying this is the case with yours, I had a

teen after all, so it definitely fit. It really wasn't that simple either, ours

has scrupe type OCD, so he's pretty hard on himself.

But, I think his point was, unless they are completely out of it, they at some

level know. But they feel the need to protect the OCD, hold on/out, because

they are afraid to change and for what might happen, to feel the anxiety, etc,

etc.....no end point. So, talking about it will not take you anywhere, not

anywhere far anyway. AND talking about it usually amps up the anxiety, so they

often don't want to do that either.

Ok, that got long. I'm the master of long answers Hope there is something

useful in there. I'm sure some with younger kids and experience with this will

jump in with thoughts.

Warmly,

Barb

>

> Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

>

> Sent from my iPhone

>

[Guest guest]

I don't think it necessarily has anything to do with age, although it could be.

If your daughter's therapist doesn't specialize in OCD, she may not be aware

that many with OCD truly believe their fears or believe that their possibliity

are very high. For me and my children, only being on medication changes this.

Re: Re: Doctor specialty for PANDAS/PANS testing

Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

Sent from my iPhone

> Hi Kara,

>

> So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

>

> Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

>

> Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

>

> Really good to hear your update Kara.

>

> Warmly,

> Barb

>

>

> > >

> > > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> > >

> > >

> >

>

>

[Guest guest]

I don't think it necessarily has anything to do with age, although it could be.

If your daughter's therapist doesn't specialize in OCD, she may not be aware

that many with OCD truly believe their fears or believe that their possibliity

are very high. For me and my children, only being on medication changes this.

Re: Re: Doctor specialty for PANDAS/PANS testing

Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

Sent from my iPhone

> Hi Kara,

>

> So good to hear that your daughter is doing so well. A long, slow process, as

you say, but it's paid off!!!

>

> Is ERP part of her treatment too, or is it all medical/medication based? Just

wondering once the PANDAS part was treated what remained, if anything.

>

> Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

>

> Really good to hear your update Kara.

>

> Warmly,

> Barb

>

>

> > >

> > > Thank you Kara. It is really unbelievable how strongly she matches up with

the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> > >

> > >

> >

>

>

[Guest guest]

With my son, medication seemed to allow him to think somewhat calmly about the

thoughts. Some of the OCD thoughts had anger behind them, which was buried very

deeply, but he was able to talk about in therapy with meds.

Rhonda

Re: Re: Doctor specialty for PANDAS/PANS testing

Anyone have any thoughts on young kids like 6 or 7 yr olds and them not having

the ability to distinguish between what's " normal " thoughts and what's " OCD

behavior/thoughts ? My daughters therapist says she is having a tough time

recognizing that her OCD thoughts

Sent from my iPhone

> Hi Kara,

>

> So good to hear that your daughter is doing so well. A long, slow process,

as you say, but it's paid off!!!

>

> Is ERP part of her treatment too, or is it all medical/medication based?

Just wondering once the PANDAS part was treated what remained, if anything.

>

> Wondering too, how long she stays on medication for PANDAS? I'm somewhat

familiar with general protocol, just wondering for your dd in particular.

>

> Really good to hear your update Kara.

>

> Warmly,

> Barb

>

>

> > >

> > > Thank you Kara. It is really unbelievable how strongly she matches up

with the list of symptoms. Today she added tics to her symptom list. I am really

getting more fired up to travel, if necessary. Have you had improvements since

you found the cause for your child?

> > >

> > >

> >

>

>

[Guest guest]

It’s so encouraging to hear that your daughter is doing well. I think I may

try our allergist/immunologists for more testing if he is open to PANDAS/PANS.

I may contact you later about the testing you’ve had done.

From: Kara

Sent: Thursday, June 07, 2012 7:11 AM

To:

Subject: Re: Doctor specialty for PANDAS/PANS testing

My dd is doing really well right now...so close to 100%. Of course every time I

say that it seems it comes back to bite me...but the bites get smaller every

time (little nips now).

It seems like it's been a slow process with ups an downs. But the trend has been

steady improvement. It took a couple of months to go from debilatating

OCD/rages, etc. to tolerable...a few more months to get to 80 or 90% better. I

feel like the last six months or so we are just working on the final 5%.

In total, since we started treating for PANDAS, it's been a little over two

years. A little over a year since we started the LYme and Bartonella.

If you have/can find a cooperative pediatrician to run lots of test before

seeing Dr., you will save yourself some time and possibly an additional

trip (i.e. first trip where she tests, second trip to go over results). If you

can have results before the first visit, you can go over those then.

You could ask if there are standard tests she runs so you can get those done

first...if they won't tell you, I can tell you what Dr. B ran for us. Their

lists are probably relatively similar.

Kara

>

> Thank you Kara. It is really unbelievable how strongly she matches up with the

list of symptoms. Today she added tics to her symptom list. I am really getting

more fired up to travel, if necessary. Have you had improvements since you found

the cause for your child?

>

>