We Have PANDAS

[Guest guest]

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]

Thanks, --I think you are the Mom who sent me to Dr. B. (I can't keep

anything straight these days) A big thank you from the bottom of my heart.

All my best,

Terry

[Guest guest]

No problem Terry!  Someone on the board helped me with the whole Dr. B thing so

if I can do the same for another, that's great!!! 

[Guest guest]

Hi ,

I just looked up your email and yes, it was you! I'm sorry you are having a

tough time w/ your son. I understand because poor Jay is sneezing/coughing

anywhere from 10 to 50 times per hour.

That is why it is frustrating to have to wait to give him his meds until after

we draw more blood. But, we have waited 3 years.....1 more week isn't going to

make a difference.

Again, it is because of this forum and parents like you, , that have helped

me to help my son and I am truly grateful.

All any of us can do whether our children have PANDAS/OCD, OCD or any other

psychiatric/neuro-psychiatric disorder is take it one day at a time and be here

for each other.

Again, all my best to you and your family,

Terry in RI

[Guest guest]

I am really trying to take things one day at a time, it just gets so hard

sometimes.  We were so hopeful after seeing Dr. Bouboulis and I think we

expected more than we should have.  I am still feeling confident with Dr. B, I

just wish I had prepared myself better for the " what ifs " .  My son is struggling

so much and his obsessive behaviors are so high right now, and on top of that he

has been so irritable and raging quite a bit.  It is so hard to watch this

happen to him over and over.  I think he must feel some disappointment as well

because Dr. B told him that with treatment he could be 95% symptom free.  The

hope and excitement he felt after that meeting was so encouraging, something I

had not seen in years.  But it is something I wish was not necessarily said

directly to him...he holds onto everything and never forgets!  I am also trying

to keep into perspective that this is nearing the end of the school year and a

time of transition for him

which is also triggering his OCD.  He has so many strong connections and

supports at school, to leave them behind for a few months must feel so sad for

him.  Anyway - enough of my venting! Talk to you soon!

(Connecticut)