Re: We Have PANDAS

[Guest guest]

Terri,

So glad you are in Dr. B's hands now. We leave Tuesday and my dd has her

first ivig treatment with him on Wed and Thursday. Wish us luck!

[Guest guest]

Terry, glad you got a definite answer, I know it's a relief. Do keep us updated

on how he'll treat Jay, how it goes. Will you have to make another trip soon or

will he just prescribe from afar or....?

>

> 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.

>

[Guest guest]

I am hoping he meant that untreated kids don't seem to outgrow it. Most of the

docs and families point to kids who are now in college and report that they no

longer have issues. Dr K feels IVIG is a cure for about 80% of kids after one

treatment.

There is a lot of discussion lately about adult Pandas, but this seems to be for

people who were untreated as kids.

As for his not seeing any kids who outgrow it, if you get better, you don't go

back to the doctor.

Not trying to be argumentative. Just doesn't fit what with I currently

understand.

>

>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.

>

>

[Guest guest]

Hi

It is a relief--this has been a 2 year journey--wish I had realized sooner and

found Dr. Bouboulis sooner for Jay.

Dr. B. has postulated that Jay has a chronic sinus infection that is feeding his

PANDAS. Jay never had a known strep throat, but had many sinus infections when

he was younger (age 3-5), one so bad he became septic. He had his adenoids out

in kindergarten. Jay is now in fifth grade.

The one piece of the puzzle I didn't realize was a child can have the strep

event, whether it be strep throat, tonsillitis, sinusitis, whatever, and then a

few years later, can start to exhibit symptoms of PANDAS. I thought my child

couldn't possibly have PANDAS, because when I read the studies, it said a strep

infection preceded the onset of symptoms. I thought those two events happened

one after the other. Jay also, to my knowledge, had never had strep throat. I

write this in case another parent reads this who is under the same mistaken idea

I was.

So, to answer your question..... Dr. B wrote Jay prescriptions for Zithromax 250

mg twice a day-----he said Augmentin is better for strep, but since Jay had had

so much Augmentin as a young child and I seemed to remember it stopped working

for him ( antibiotic resistance) we decided to try Zithromax. He also wrote him

for a sliding scale of prednisone; 40mg x6days, 30mgx4days, and so on down to

10mg. He wrote him for Mucinex and Singulair as well, in the hope to knock out a

chronic sinus infection and strep. This is all for a month, during which I will

journal his symptoms..... Jay has a sneeze/cough tic that is readily obvious

along with other tics and OCD behaviors. I will call the Dr. then and discuss.

But we already have a date set up for IVIG in August as it is hard to get an

appt. and the Dr. will start the pre-certification process with my insurance

company. If Jay miraculously gets better w/ the Rx meds, then we won't do IVIG

now. We don't have plans to see the Dr. again until August, though he might want

us to come in depending on Jay's symptoms. He also wrote for some repeat and

more specific bloodwork, some of which has to go to Igenex lab in CA. My dilemma

is, I won't get the kit form Igenex for 4-5 days, so I don't know if I should

start Jay's meds until we get the blood done. I have a call into Dr. B today,

but he is a busy guy.

I know this is a pretty knowledgeable bunch, but if anyone has questions about

PANDAS that I can answer with my newfound knowledge, please feel free to email

me.

Terry in RI

[Guest guest]

Thanks Terry. I have seen where sinus and other have been mentioned too, not

just strep. Wasn't sure if that fell under the PITANDS acronym instead of

PANDAS, did he mention PITANDS?

I also thought the strep/OCD happened within a few weeks of each other. Guess

maybe the groundwork is just laid if maybe there is something chronic/repeated

that happens with recurring illness or immunity...? Just thinking scattered

thoughts now, LOL, don't mind me!

I hope you see miraculous results with the current meds, do keep us updated!!

>

> Hi

>

> The one piece of the puzzle I didn't realize was a child can have the strep

event, whether it be strep throat, tonsillitis, sinusitis, whatever, and then a

few years later, can start to exhibit symptoms of PANDAS. I thought my child

couldn't possibly have PANDAS, because when I read the studies, it said a strep

infection preceded the onset of symptoms. I thought those two events happened

one after the other. Jay also, to my knowledge, had never had strep throat. I

write this in case another parent reads this who is under the same mistaken idea

I was.

>

[Guest guest]

I've seen a few things written when I google about PANDAS that they are looking

at possible adult onset PANDAS too, that more research is needed. (guess the " P "

would have to change if they decide this happens with adults).

> >

> >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.

> >

> >

>

[Guest guest]

Yes, you are correct--he meant kids who are NOT treated, to his knowledge, do

not outgrow PANDAS, though he said a subset of untreated kids may grow out of

it, but as you mentioned, he doesn't see them because there's no need to come to

him. I had read on this forum that kids who have PANDAS outgrow it, I assumed

that was untreated kids. I wanted to correct that misconception. I specifically

addressed it with Dr. B because I don't want parents to think their PANDAS kid

doesn't need to be treated, that they'll outgrow it.

He said he does see a lot of adult PANDAS--they have had it since they were a

kid, never treated, and now they come to him. He said adult tics are milder, but

definitely have OCD.

Thanks for making me clarify that.

Terry in RI

> >

> >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.

> >

> >

>

[Guest guest]

Oh, I also forgot to mention that he sees more Anorexia with adult PANDAS.

Terry

> >

> >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.

> >

> >

>

[Guest guest]

Hi Chris--

We did not discuss PITANDS, per se, but he did say that once the immune system

is compromised by PANDAS it opens the door for other insults, such as Lyme,

etc, to cause the same neuro-psychiatric symptoms.

As far as the chronological events re: strep and symptoms, he explained it this

way: Strep invades the body, the child may not have overt symptoms enough to

warrant a visit to the ped-doc and symptoms resolve. The body mounts an immune

defense against the strep and forms immune complexes and IG's that then take

time to form and then breach the blood brain barrier. These immune complexes

then can attack the brain stem and then it takes even more time for symptoms to

occur.

Then there is the child who gets strep and soon after the symptomatology-. I

don't know enough about that course to talk about it.

Obviously, then this is an auto-immune disease or immuno-deficiency disorder,

because not all kids who get (untreated) strep get PANDAS.

There is probably a genetic predisposition--in Jay's case, his father has OCD

and on my side of the family, my mom had Rheumatoid Arthritis, a know

auto-immune disease and I have mild ulcerative colitis, also postulated to be

auto-immune. Remember, too that he had no specific antibodies to strep in his

blood, so that other immune complexes may have had to fight the strep.

Dr. B did test hime for other organisms, Lyme ( which we are retesting),

Mycoplasma pneumoniae and others. He was very thorough.

Hope this answers your question.

Terry in RI

[Guest guest]

Ok, thanks. That makes me feel much better.

I think on another post you asked about starting meds and whether it could

effect your Igenex results. I think I'd hold off - at least on the prednisone -

until you talk to Dr B on Monday.

Since something is making you re-test and do the more specific Igenex tests,

there must be a possibility of Lyme in the mix. The last thing you want to do

with Lyme is give prednisone. That would suppress the immune system and allow

the Lyme-related bacteria to have a field day. You could probably start the

antibiotics, as it would treat bacteria responsible for both Pandas and Lyme and

my understanding (which is far from solid regarding Lyme) is that the Igenex

tests are looking for antibodies against the specific antigens associated with

the 3 Lyme-related bacteria. So if there's Lyme, the antibodies will be there

whether you start antibiotics in the same week or not. But you might want to see

if there's a Q & A on the Igenex website or an 800 number you can call. You can

also go to ILADS.org and send them an email asking if starting abx prior to the

test is ok. I think it's a volunteer non-profit and their site might be

monitored on the weekends.

>

>

> Yes, you are correct--he meant kids who are NOT treated, to his knowledge, do

not outgrow PANDAS, though he said a subset of untreated kids may grow out of

it, but as you mentioned, he doesn't see them because there's no need to come to

him. I had read on this forum that kids who have PANDAS outgrow it, I assumed

that was untreated kids. I wanted to correct that misconception. I specifically

addressed it with Dr. B because I don't want parents to think their PANDAS kid

doesn't need to be treated, that they'll outgrow it.

>

[Guest guest]

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]

Try this link:

http://www.coramhc.com/Map/Default.aspx

They have 75 IVIG infusion locations across the US. I don't know if they'll do a

child's first infusion or not. But if you can get Dr K to prescribe, they might

be willing to follow his orders.

How is your older daughter doing now?

> >

> > 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 I have decided to wait on the meds.

Jay showed absolutely nothing on his Lyme. Dr. B is retesting because Igenex

tests for more bands on the Western Blot than the typical lab that you and I go

to. He doesn't feel Jay has Lyme, I think he's just being thorough.

I tried calling today and got a harried doctor who works in the office. I think

I will just wait until we get the blood drawn. It's very hard to wait though,

we've waited this long and it's hard to live with the poor kid who is sneezing

and coughing 50 times an hour.

Thanks,

Terry

> >

> >

> > Yes, you are correct--he meant kids who are NOT treated, to his knowledge,

do not outgrow PANDAS, though he said a subset of untreated kids may grow out of

it, but as you mentioned, he doesn't see them because there's no need to come to

him. I had read on this forum that kids who have PANDAS outgrow it, I assumed

that was untreated kids. I wanted to correct that misconception. I specifically

addressed it with Dr. B because I don't want parents to think their PANDAS kid

doesn't need to be treated, that they'll outgrow it.

> >

>

[Guest guest]

I'd encourage you to call Dr B on Monday and ask about starting the antibiotics

at least. If they won't mess up the lab results, I'm sure the whole family would

benefit from starting treatment quickly. Yes, you want accurate labs, but no

need to suffer if the results won't be effected. It took a friend of mine two

weeks to get the Igenex results. I didn't mean to suggest you shouldn't do what

you can to help your son as quickly as possible. Hope it didn't come across that

way.

> > >

> > >

> > > Yes, you are correct--he meant kids who are NOT treated, to his knowledge,

do not outgrow PANDAS, though he said a subset of untreated kids may grow out of

it, but as you mentioned, he doesn't see them because there's no need to come to

him. I had read on this forum that kids who have PANDAS outgrow it, I assumed

that was untreated kids. I wanted to correct that misconception. I specifically

addressed it with Dr. B because I don't want parents to think their PANDAS kid

doesn't need to be treated, that they'll outgrow it.

> > >

> >

>

[Guest guest]

Hi ,

Your message was fine--and I appreciate the support and advice.

When I called Dr. B's office today at 9am ( when they open), the sec'y told me

Dr. B doesn't normally come in on Sat., but he was coming in and he would call

me. I called again at 10:45 and she said she would be there until 1:00 and would

have Dr. B call me when he came in. So, at 12:45 ( and you know I was stressed

by this time) I called

and she had me talk to another doctor, a Dr. Lawson. I explained my question

about starting meds and that Dr. B was retesting Lyme, Igenex, the whole thing.

I probably didn't explain well and he thought we were treating Lyme. I clarified

we were treating PANDAS. He had me wait while he tried to call Dr. B and then

came back on the line and said I should wait to give meds until the Igenex

results came back. I incredulously said, " When the results come back? We're not

treating Lyme sir, we must have a misunderstanding " He replied " I don't

appreciate being spoken to this way " My jaw dropped. I apologized and told him I

just wanted to treat my child. He made a comment about how PANDAS' mothers are

stressed or some such stuff and siad he was working on his day off. I repeated

my apology and that I didn't meant to offend and he said I hadn't and then said

I should hold off on giving meds, specifically the prednisone, until after the

bloodwork. By this time I was in tears and trying not to audibly cry on the

phone and he said 'Good Luck'.

I will wait until after the bloodwork to start giving Jay his meds. 4 or 5 more

days are not going to make a difference. We have waited 3 years for definitive

diagnosis and treatment and 5 more days isn't going to make a difference, I

guess.

I didn't expect the reaction I got from this Dr. I didn't think I was that

overbearing, I was trying to explain and be clear. I hope we don't deal with

him, as I found Dr. B to have a wonderful bedside manner. I AM stressed, hence

the tears.

To complicate things, Jay visits his Dad next w/e and my ex is truly ignorant

when it comes to meds and making sure meds are taken correctly. So, I may just

start Jay a week from this Monday, just to make sure everything is done right.

Sorry to vent. Thanks for listening.

Terry

> > > >

> > > >

> > > > Yes, you are correct--he meant kids who are NOT treated, to his

knowledge, do not outgrow PANDAS, though he said a subset of untreated kids may

grow out of it, but as you mentioned, he doesn't see them because there's no

need to come to him. I had read on this forum that kids who have PANDAS outgrow

it, I assumed that was untreated kids. I wanted to correct that misconception. I

specifically addressed it with Dr. B because I don't want parents to think their

PANDAS kid doesn't need to be treated, that they'll outgrow it.

> > > >

> > >

> >

>

[Guest guest]

>

> Deneen, I was wondering if the doctor in Plano is Dr. Rao? We have had two

appointments with him, and found that he pretty much dismissed Dr. Cunningham's

PANDAS research as well as my son's abnormal results on the Cunningham test, and

said that PANDAS is rare. We have an appointment in July with Dr. Trifiletti in

New Jersey for a second opinion. Dr. Trifiletti said PANDAS is not at all rare

and he had 400 files for PANDAS cases right in front of him. Dr. Rao runs many

blood and urine tests, and treats with supplements. My son is now taking six

supplements, but I haven't noticed any improvements yet.

[Guest guest]

Hi - what led you to IVIG treatment as opposed to antibiotics?  I am just

wondering because we have been seeing Dr. B and my son is on antibiotics

(although insurance just refused to pay for them because it had been too much

too soon!!!).  Dr. B mentioned IVIG down the road if antibiotics don't work, but

I dont really know enough about it so it scares me a bit.  Any insight would be

wonderful!!

Thanks!

(CT)

[Guest guest]

Sorry to be so slow at responding, but life has been busy. Yes, I am referring

to Dr. Rao. I had a phone consultation with him this past Friday and he didn't

say anything about PANDAS being rare. I had sent him a detailed letter over a

month ago. Included in the letter was the fact that Dr. K in Chicago had

diagnosed both of my girls with PANDAS based on their symptoms even though their

strep titers were in the normal range. He did say that he had only treated

about 25 or so cases of PANDAS and that in his experience the titers were

elevated, even when a lot of time has passed (my girls started showing symptoms

over 3 years ago). However, he seemed very open minded and even agreed to

consult with Dr. K in Chicago about doing IVIG for my youngest daughter. He said

it isn't about his way or Dr. K's way, it is about helping the child. My oldest

daughter (15 y.o.) went to Dr. K in Chicago for IVIG treatment at the end of

May. We have slowly been seeing improvements in her. Dr. Rao wants us to get

some blood work done on our 13 y.o. daughter this week and then he agreed to put

her on antibiotics. Her OCD is severe and she only leaves the house when forced

for appts. I asked if he would put her on antibiotics first to see if she would

improve and make it easier to travel with her to get the IVIG, and he agreed.

We're hoping to get 13 y.o. IVIG in Plano since it would be much easier and

shorter trip versus going to Chicago. Dr. K also said he would be happy to

consult with Dr. Rao on IVIG. I guess we'll see after the blood results come

in. I'm surprised though about what you said about his comments on the

Cunningham tests because Dr. Rao highly recommended them to me. He said they

were expensive and not a requirement but he thought they were good tests to get

done when possible. I wish I could have taken my youngest to Dr. K in Chicago

at the same time as my 15 y.o. but it just wasn't possible. Right now I'm

willing to settle for someone with less experience just to get her some help.

So, I was pleased with the phone consultation with Dr. Rao and came away very

hopeful. We'll see what happens. Will keep you posted. Thanks for sharing

your experience with me.

Deneen

>

>

>

> >

> > Deneen, I was wondering if the doctor in Plano is Dr. Rao? We have had two

appointments with him, and found that he pretty much dismissed Dr. Cunningham's

PANDAS research as well as my son's abnormal results on the Cunningham test, and

said that PANDAS is rare. We have an appointment in July with Dr. Trifiletti in

New Jersey for a second opinion. Dr. Trifiletti said PANDAS is not at all rare

and he had 400 files for PANDAS cases right in front of him. Dr. Rao runs many

blood and urine tests, and treats with supplements. My son is now taking six

supplements, but I haven't noticed any improvements yet.

>

[Guest guest]

Sorry to be so late in answering you. Been crazy busy. My dd has been on

both Augmentin and Zithromax for more than 7 months. She is also immune

deficient to strep, hence moving on to Ivig soon after seeing Dr. B. she

had her first ivig treatment 11 days ago. The procedure went well. Now we

are waiting for improvement. It can take a few weeks. She is now off of

Augmentin, Prednisone, and Advil. Still on Zithromax, Celexa, Singulair,

and something to keep yeast at bay. She initially worsened after the IVIG

and stopping those other drugs, but not horribly so. Hoping the benefits

kick in soon.

From:

[mailto: ] On Behalf Of Garceau

Sent: Sunday, June 20, 2010 10:29 PM

To:

Subject: RE: We Have PANDAS

Hi - what led you to IVIG treatment as opposed to antibiotics? I am

just wondering because we have been seeing Dr. B and my son is on

antibiotics (although insurance just refused to pay for them because it had

been too much too soon!!!). Dr. B mentioned IVIG down the road if

antibiotics don't work, but I dont really know enough about it so it scares

me a bit. Any insight would be wonderful!!

Thanks!

(CT)