: RE: Re: Dr. Trifiletti- now Dr Bouboulis and PANDAS

[Guest guest]

Terry,

Several parents on latitudes report that it took time (2 weeks or more) to see

improvement on antibiotics. Some speculate that the " worse before better " thing

might be herxing - a reference to the herxheimer reaction when bacteria die off

during an initial antibiotics onslaught and release toxins that actually make

things worse for a time until the antibiotics get the upper hand. You see it a

lot in the treatment of Lyme. I don't know if that's what's going on in Pandas,

but you're not the first parent to have this experience.

You're also not the first to have to continue to be the case manager even once

you get to the expert. After a long journey, you're so relieved to get to

someone who " gets it " . But you unfortunately can't hand over the car keys and

let someone else drive. " Managing " your specialist is easier than dealing with

your local doctor, but it's more like you've graduated to herding sheep instead

of cats, not like you're suddenly able to retire from herding altogether.

Sounds like you're moving forward. Try to stay focused on that : )

[Guest guest]

Hi Terry,

My son who will be 9 in Sept, was just diagnosed with PANDAS in Jan, and has

suppossedly had it since he was 4. He has been on antibiotics for a little over

9 months now(seeing he has lyme as well) and he still has ocd symptoms full

force. His tics have pretty much dissappeared though. The last time he was

having severe tics was in May, so I just wanted to let you know,it took a good

4

months of 2-3 antibiotics for my son's tics to stop.

thank you for sharing about DR. B. We have our first appt on the 28th.

Hugs

Judy

________________________________

To:

Sent: Thu, July 8, 2010 11:06:31 PM

Subject: Re: : RE: Re: Dr. Trifiletti- now Dr Bouboulis and

PANDAS

 

I want to say something about Dr. Bouboulis and his office. While I think he is

terrific and the staff is very nice---they too, are extremely overworked and it

is up to the parent to make sure that things are getting done. I have gotten

repeat bloodwork requests ( the same one faxed to me). Dr. B is fab, but he

wanted repeat Lymes and wanted it from IgeneX labs in CA and IgeneX wants their

own req filled out and it was a little bit of a nightmare, faxing it to Dr. B's

office and making sure all the correct info was filled out ( which it wasn't).

The staff is overworked and can't keep you straight as they have so many

patients. It would have helped if Dr. B had the IgeneX reqs in his office ( can

be downloaded from their website) so he could hand it to the parent. I have

downloaded the forms and am mailing them to him for future reference.

I faxed all bloodwork ahead of time and was told I would get a blood work req in

the mail before my appt. One week before the appt I called and there was a huge

scramble to get the blood work req to me so I could get my son to the lab aand

he could get results before the appt. Not all results were in when we went. We

had the next scramble with the IgeneX labs and now refaxing me lab requests that

were already done but were delayed waiting for the IgeneX kit to be mailed to me

from CA.

So, please be aware that while he is a brilliant MD, you as a parent need to be

on top of what's going on and it can be stressful.

My son started his Zithromax, prednisone, mucinex and Singulair on Tues June

30th, it has been 9 days and I have only seen the very slightest improvement in

his sneezing/cough tic today. He actually seemed to get a little worse at first.

My son has been undiagnosed for 3 years, so I don't know if one sees immediate

improvement when it's been that long. I don't know if I was supposed to see

faster/better improvement as it was not discussed with me. Anyone have any

insight?

Thanks.

Terry in RI

[Guest guest]

Hi Terry - I have had similar experiences with dr. Bouboulis. I think he's

great but I have had a bard time getting info sent to me when requested and had

a few times that I called and he never got the message. I am Now going through

an in issue with the antibiotics bc insurance won't pay for anything over 12

days. I am hoping that the office can respond quickly enough to help with this

ordeal. Has anyone esle had this problem?

Connecticut

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