PANDAS study

[colleendonny]

I called the number today for the PANDAS study. The rep took mine and DD4's information to make sure she even fit the criteria. He then suggested I contact the director directly. I did and left her a voicemail.

For anyone who has done the study, how long until they typically get back to you? And when do they initially have you and your child come to be evaluated? And from there long until they actually start the IVIG?

So we are still new to this. Have no diagnosis yet. We see Dr. B for the first time next week. What is the benefit of trying IVIG through the study before trying abx?

[bigmighty]

From the day they received my initial phone call to the day DS entered the hospital at NIH for his 1st visit was three weeks. They returned that first call within 48 hours, sent me forms/paperwork to complete the day after that. I turned those around fast and fed-Xed them up to Yale. They had a couple of conference calls within one week. Within two weeks of my initial contact, they had called me back to say they would like to arrange an in-person meeting. My 1st contact to the study was 4/10 and DS's 1st visit to NIH began on 5/1.

[bigmighty]

From the day they received my initial phone call to the day DS entered the hospital at NIH for his 1st visit was three weeks. They returned that first call within 48 hours, sent me forms/paperwork to complete the day after that. I turned those around fast and fed-Xed them up to Yale. They had a couple of conference calls within one week. Within two weeks of my initial contact, they had called me back to say they would like to arrange an in-person meeting. My 1st contact to the study was 4/10 and DS's 1st visit to NIH began on 5/1.

[colleendonny]

Thanks. I'm not sure if they will even contact me back. I emailed a Dr. from a Boston hospital. He doubts she will be accepted because she has never had a positibe strep infection. I hope they call.

[colleendonny]

She didn't qualify. Her problems are not debilitating enough.

[bigmighty]

I am glad you still have the appt. w/Dr. B. set up. Sorry about the study.

[eljomom]

ugh.....there's the problem that chapps my a$$!!! Those of us with kids who are "not debilitated enough" can't get "EARLY TREATMENT"!!!!! Isn't that what is touted as THE MOST IMPORTANT aspect of treatment? Isn't that why so many of us want to educated our docs, others, etc so that other kids can get early treatment??? Even with a top pandas specialist, we STILL have not been offered IVIG. Not debilitated enough. Funny thing is that there are kids who tic less, less ocd, who actually ARE debilitated. It's subjective. My kid still has adah, tics, ocd, sensory issues, etc......just not debilitated. WTF?? Sorry for the rant. I do understand this is related to a research trial. It still just really aggravates me to hear that statement---"not debilitated enough."

[colleendonny]

Eljomom, ditto. From what I have been reading isn't early intervention key for PANDAS? They should be included in the study as well. Even for their benefit to prove or not prove thay IVIG is good for the "non debilitated" kids. May I ask your PANDAS specialist?

[kimballot]

I don't think the NIH is denying that early intervention is a good thing... I just think that they need kids with clear and profound behaviors - otherwise they would not have enough data to measure and see if there is a change. So - just because she does not qualify for the research study she should not be excluded from receiving treatment. I hope you have good results with your Dr. Visit and I hope you are able to get her the treatment she needs.

[colleendonny]

Thanks, I hope to get started on some treatment or something when we see Dr. B next week.

[bmam]

eljomom, I hear your frustration! I, too, am beyond frustrated that the NIH-YALE study is limited to 12 yrs. old. We are dealing with now 19 yr. olds (PANS since middle school possibly prior) that have debilitating symptoms. They are profile perfect for the study, but for their age. Plus, they are identical twins, so we have a study within a study. We made it through high school, but college is posing a challenge. We are on the books for the first IVIG, for one. The other will start prophylactic abx. We are hoping and praying for success.

[mom2yo]

eljomom, I hear your frustration! I, too, am beyond frustrated that the NIH-YALE study is limited to 12 yrs. old. We are dealing with now 19 yr. olds (PANS since middle school possibly prior) that have debilitating symptoms. They are profile perfect for the study, but for their age. Plus, they are identical twins, so we have a study within a study. We made it through high school, but college is posing a challenge. We are on the books for the first IVIG, for one. The other will start prophylactic abx. We are hoping and praying for success.

bmam,

 

Hi. what have u done so far in regards to treatment? u said u r starting ivig? have u seen improvements since u started this journey (which was when btw?)...I have a 17 year old ds with whom we r now looking into pandas as a diagnosis. Bringing him up has been quite challenging to say the least. I am curios abt where u've been with this so far since u also have older kids. i too am hoping and praying (figuratively and literally) for success!

 

wishing everyone success,

mom2yo