IVIG study still open

[tpotter]

Dr. Swedo mentioned at the conference in Texas, that the study was still open, and only has about 8 - 10 kids currently enrolled (I think they are shooting for 50!) They are being very picky, and I know the child has to have very recently become sick. If you are interested in getting more information about it, I just copied this from the NIMH website:

Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Research Study for Children

 

If your child suddenly developed obsessive or repetitive thoughts and behavior after a strep (streptococcal) infection, he or she may have PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection). We are currently accepting children (aged 4 to 12 years old) with PANDAS into a study investigating whether intravenous immunoglobulin (IVIG) improves the symptoms of PANDAS. Intravenous immunoglobulin is FDA-approved for primary immunodeficiency states and idiopathic thrombocytopenic purpura. Its use in this study is experimental.

 

During the first 5-day inpatient stay, some children will receive IVIG, and some children will receive a placebo (intravenous salt water with no active ingredient). After 6 weeks, children with severe persistent symptoms may receive IVIG during a second 5-day inpatient stay.

 

Two additional one- or two-day evaluations 3 and 6 months after the first study visit are required. There is no cost to participate in this study, and travel and lodging assistance will be provided. Parental consent is required.

 

Children will also continue to be followed by their own physician while in this study.

 

To find out if your child qualifies or for more information, please call Rachel Kushner at Yale (203-737-5588) or Lorraine Lougee at NIH (301-435-6652) (TTY# 1-866-411-1010) or email us at Rachel.Kuschner@yale.edu or lougeel@mail.nih.gov.

__________________________________

 

The sooner the study is completed, the sooner we can all possibly get insurance to pay for IVIG for our kids.

[hootie]

Too bad I can not have my son in the study...he is too old.

[Sequin]

TPotter-

 

Am I correct in understanding that in this study they are clearly only looking for the high OCD patient not one who just has more of the motor tic issues? I am assuming it is because they are seeing the OCD as the more detrimental of the two and considering them for treatment only if very severe in symptoms. Would that be a correct assumption??

[tpotter]

TPotter-

 

Am I correct in understanding that in this study they are clearly only looking for the high OCD patient not one who just has more of the motor tic issues? I am assuming it is because they are seeing the OCD as the more detrimental of the two and considering them for treatment only if very severe in symptoms. Would that be a correct assumption??

 

 

I don't know all the details of what they are looking for...just that they have some very stringent requirements. I would contact them, and ask. Worst case, you don't get accepted. Best case...you do.

[meaghan240]

I emailed them too, but my son is only 2.5 ... I know it says 4 though and I know they need to stay in the guidelines, but worst case is they say no Too bad because he has all the other requirements..

[bulldog24]

i called and they called back last week. asked me a lot of specific q's.

 

Told me they would forward to the researchers and let me know.

 

Keeping my fingers crossed

[Burnell]

My DD12 was one of the 10 in the study.

You must meet the protocol.

Ages 4-12

The Biggest Reason kids are NOT being accepted: YOUR CHILD MUST NOT HAVE BEEN TREATED WITH STEROIDS, NO PREDNISONE!

OCD or tics or OCD with tics -- all would be considered.

Our DD relapsed after 2 months of the IVIG, no one knows why.

[tantrums]

My son was on steroids and that was not a problem. He made it all the way through the preliminary and his info with Yale and his info was sent to NIH and I was told he was in. Then he was excluded as we were researching places to stay down there! He was ultimately excluded because he has serum sickness now to every single class of antibiotics and they didn't feel safe trying any more abx with him

 

Best of luck to anyone that DOES get in!!!

[norcalmom]

I can't believe the original study had 50 kids - 20 years ago, before the internet, and before there was even a name for the disorder!

[911RN]

My DD12 was one of the 10 in the study.

You must meet the protocol.

Ages 4-12

The Biggest Reason kids are NOT being accepted: YOUR CHILD MUST NOT HAVE BEEN TREATED WITH STEROIDS, NO PREDNISONE!

OCD or tics or OCD with tics -- all would be considered.

Our DD relapsed after 2 months of the IVIG, no one knows why.

 

 

So, if there is relapse...does this mean that IVIG is not the supposed "cure all" for PANDAS? Or, do we have to wait for the research to be completed and for the paper to come out that IVIG is not effective for some? Which, can be gleaned, all the same, from multiple folks on this forum that have done IVIG with their children. Some it works, some it does not???!!!

 

So, my question is...are they narrowing down results to figure out what is different about the responders from the non responders. Any further testing? What recourse does the study offer if one relapses after IVIG....long term antibiotics? SSRI's? Or, just stuggle along with child with OCD and/or tics?

[Kiera]

Burnell, can you tell me if it's necessary to have a pos throat culture prior to onset of symptoms (as opposed to pos strep titers) to be accepted into study? I've advised my neighbor (see post "Is this possible") not to use steroids as she should keep her options open. She's just starting out on pandas journey with 6yr dd, very classic so far except never did throat culture with initial sore throat as symptoms were mild. She's going to Dr today to hopefully get titers checked, hopeing this is enough for trial. She has contacted NIMH but awaiting their call back!