Re: Re: We Have PANDAS---To Deneen

[Guest guest]

Hi Deneen,

 

I am so glad that you found someone who treats PANDAS in Plano. I am Houston.

Can you tell me the information of the doctor in Plano? Also, please share with

us your experience with the doc in Plano if you have gone to the appointment.

 

Dr.B in CT is just too far for us fly out there, specially with my son's

condition, a long hour flight to CT...

The farthest doc we made it to visit only in Kansas....

 

Rei

 

Subject: Re: We Have PANDAS

To:

Date: Saturday, June 19, 2010, 4:13 PM

 

That's great you found a doctor who can help you! I too am thankful for this

group and the posts about PANDAS because that is how I found out about Dr. K in

Chicago who also treats PANDAS with IVIG. I did a phone consultation with him in

February and my oldest daughter went to Chicago for treatment in May. The reason

for the 3 month delay was because I was trying to find someone locally to treat

PANDAS. I called all over Austin, Texas and found no one. Actually, I talked to

a nurse of a local Ped. Neurologist who told me that he treats PANDAS and uses

IVIG for treatment. She told me this two separate times on the phone. I made an

appt. with him and had to wait 8 weeks for the appt., only to find out he has

NEVER used IVIG and has treated very few PANDAS patients. Arrrrrggggghhhh! What

a waste of time! Could have been to Chicago and back in that time. Anyway, Dr. K

in Chicago is wonderful! My daughter and husband really liked him and that is

saying a lot

in this family. We are not fond of doctors due to bad experiences. I have a

second daughter with PANDAS whose symptoms are much worse so am still trying to

find someone closer to treat her. Have a phone consultation with a Dr. in Plano,

Texas this Friday who say they treat PANDAS and use IVIG. This would be much

closer than Chicago. Will update everyone if we go to him so that everyone is

aware of another doctor who treats PANDAS. Anyway, thanks to everyone for

sharing information and helping others.

Deneen

>

> Hello all,

>

> I don't post often but I read the digest daily. It is because of this group

that I became convinced that my 11 yo boy with OCD and tics had PANDAS. It was

thanks to another Mom on this list that I decided to travel the 3 hours to see

Dr. Denis Bouboulis in Darien, CT. He also has an office in Stamford, CT. He is

an allergist/immunologist and he has treated many PANDAS cases. He is the MD who

treated successfully the girl on the TODAY show who couldn't stop sneezing.

>

> I have just returned from a long 9 hour trip to see him with my son, Jay. Dr.

Bouboulis has diagnosed Jay with PANDAS. He was truly superb. He is so busy, yet

we were given all the time that was needed for discussion, history and we had

done lab work ahead of time. I called and spoke to Stella, one of his staff, and

I faxed existing labwork to them a month ahead. Then I called and she faxed back

the copious bloodwork to be done before he came.

>

> Dr. B. took the time to educate me and also spoke to Jay. I am a medical

professional and I understood a lot, but I was impressed with his manner, his

teaching style, his knowledge,compassion and his passion to help PANDAS

patients. He also explained he sees a lot of adult PANDAS. He does not think

that kids outgrow PANDAS, but he said there might be a subset of kids who

do--but he doesn't see them.

>

> As many of you know, he said PANDAS is a clinical diagnosis, but he does do

blood work to aid him in treating and diagnosing. For example, he tested for 14

different serotypes of strep IgA--this means he looked to see if Jay had any

strep fighters in his blood...he had NONE. So even though my son had never had a

known strep throat in his life, he is incredibly vulnerable to strep.

>

> I had been told by my ped-doc (whom I love) that Jay's strep titer 'wasn't

high enough'--it was mildly elevated. The psychiatrist we went to ( Harvard

trained) told me that PANDAS existence was,'tenous at best'. After reading this

list over and over and researching, I finally felt in my gut that Jay had PANDAS

and I am very glad to have met with Dr. B. He is so knowledgeable, there can be

no doubt. This is no fly by night diagnosis.

>

> I encourage anyone who is in the CT region who thinks their child has

PANDAS--to please call him. He has people fly in from CA. He says there are only

about 6 MD's who treat PANDAS, and not all of them do IVIG.While we were there,

one child from VT, one child from MA, one child from NH was also there.

>

> Thank you to all of you for this group. I know there was some talk a while ago

about too much PANDAS info on here or some such stuff. I say there can't be too

much. Keep it up, along with all the other OCD info. It may just help another

Jay.

>

> Gratefully,

> Terry in RI

>

[Guest guest]

Deneen. Dr. Tieu is willing to test for pandas. So my guess is he is will to

treat. He is part of the Texas Child study Center that collaborates with

University of Texas and Dell's Children's Hospital in Austin TX

I send him all kinds of info from this group and he is always willing to

research it and understand

Sent via BlackBerry by AT & T

Re: We Have PANDAS

To:

Date: Saturday, June 19, 2010, 4:13 PM

 

That's great you found a doctor who can help you! I too am thankful for this

group and the posts about PANDAS because that is how I found out about Dr. K in

Chicago who also treats PANDAS with IVIG. I did a phone consultation with him in

February and my oldest daughter went to Chicago for treatment in May. The reason

for the 3 month delay was because I was trying to find someone locally to treat

PANDAS. I called all over Austin, Texas and found no one. Actually, I talked to

a nurse of a local Ped. Neurologist who told me that he treats PANDAS and uses

IVIG for treatment. She told me this two separate times on the phone. I made an

appt. with him and had to wait 8 weeks for the appt., only to find out he has

NEVER used IVIG and has treated very few PANDAS patients. Arrrrrggggghhhh! What

a waste of time! Could have been to Chicago and back in that time. Anyway, Dr. K

in Chicago is wonderful! My daughter and husband really liked him and that is

saying a lot

in this family. We are not fond of doctors due to bad experiences. I have a

second daughter with PANDAS whose symptoms are much worse so am still trying to

find someone closer to treat her. Have a phone consultation with a Dr. in Plano,

Texas this Friday who say they treat PANDAS and use IVIG. This would be much

closer than Chicago. Will update everyone if we go to him so that everyone is

aware of another doctor who treats PANDAS. Anyway, thanks to everyone for

sharing information and helping others.

Deneen

>

> Hello all,

>

> I don't post often but I read the digest daily. It is because of this group

that I became convinced that my 11 yo boy with OCD and tics had PANDAS. It was

thanks to another Mom on this list that I decided to travel the 3 hours to see

Dr. Denis Bouboulis in Darien, CT. He also has an office in Stamford, CT. He is

an allergist/immunologist and he has treated many PANDAS cases. He is the MD who

treated successfully the girl on the TODAY show who couldn't stop sneezing.

>

> I have just returned from a long 9 hour trip to see him with my son, Jay. Dr.

Bouboulis has diagnosed Jay with PANDAS. He was truly superb. He is so busy, yet

we were given all the time that was needed for discussion, history and we had

done lab work ahead of time. I called and spoke to Stella, one of his staff, and

I faxed existing labwork to them a month ahead. Then I called and she faxed back

the copious bloodwork to be done before he came.

>

> Dr. B. took the time to educate me and also spoke to Jay. I am a medical

professional and I understood a lot, but I was impressed with his manner, his

teaching style, his knowledge,compassion and his passion to help PANDAS

patients. He also explained he sees a lot of adult PANDAS. He does not think

that kids outgrow PANDAS, but he said there might be a subset of kids who

do--but he doesn't see them.

>

> As many of you know, he said PANDAS is a clinical diagnosis, but he does do

blood work to aid him in treating and diagnosing. For example, he tested for 14

different serotypes of strep IgA--this means he looked to see if Jay had any

strep fighters in his blood...he had NONE. So even though my son had never had a

known strep throat in his life, he is incredibly vulnerable to strep.

>

> I had been told by my ped-doc (whom I love) that Jay's strep titer 'wasn't

high enough'--it was mildly elevated. The psychiatrist we went to ( Harvard

trained) told me that PANDAS existence was,'tenous at best'. After reading this

list over and over and researching, I finally felt in my gut that Jay had PANDAS

and I am very glad to have met with Dr. B. He is so knowledgeable, there can be

no doubt. This is no fly by night diagnosis.

>

> I encourage anyone who is in the CT region who thinks their child has

PANDAS--to please call him. He has people fly in from CA. He says there are only

about 6 MD's who treat PANDAS, and not all of them do IVIG.While we were there,

one child from VT, one child from MA, one child from NH was also there.

>

> Thank you to all of you for this group. I know there was some talk a while ago

about too much PANDAS info on here or some such stuff. I say there can't be too

much. Keep it up, along with all the other OCD info. It may just help another

Jay.

>

> Gratefully,

> Terry in RI

>