NIMH and PANDAS

[sandree]

It seems to me that when I accessed the NIMH site a while ago - probably over 1 or 2 years ago regarding PANDAS, they mentioned antibiotic treatment and even IVIG as possible treatments. Now when I visited their site, it says that PANDAS should be treated exactly as regular OCD with CBT and an SSRI. They say they are studying antibiotic treatment but have no conclusive evidence. About IVIG they say there was a study done that showed improvement with IVIG but that it has great potential risks and should only be used in the most severe cases. Do you think they have changed their stance on this issue? It also says "PANDAS studies are no longer recruiting patients". Does this mean that they have stopped researching PANDAS?

 

It seems that there is a lot of anecdotal evidence that Zithromax and IVIG work for PANDAS/PITANDS but I am unsure how to determine if these things are safe. So tired of trying to figure out if I am on the right track or not.

 

Thanks, Sandy

[Pezmom]

It seems to me that when I accessed the NIMH site a while ago - probably over 1 or 2 years ago regarding PANDAS, they mentioned antibiotic treatment and even IVIG as possible treatments. Now when I visited their site, it says that PANDAS should be treated exactly as regular OCD with CBT and an SSRI. They say they are studying antibiotic treatment but have no conclusive evidence. About IVIG they say there was a study done that showed improvement with IVIG but that it has great potential risks and should only be used in the most severe cases. Do you think they have changed their stance on this issue? It also says "PANDAS studies are no longer recruiting patients". Does this mean that they have stopped researching PANDAS?

 

It seems that there is a lot of anecdotal evidence that Zithromax and IVIG work for PANDAS/PITANDS but I am unsure how to determine if these things are safe. So tired of trying to figure out if I am on the right track or not.

 

Thanks, Sandy

That is a change. Not only did they used to have Dr. Swedo's studies on their site, but when I met her in October she was still talking about IVIG or plasmeresis (sp?) being an option (although with reservations and reminders of the risks). In that discussion, she advised me that I should consider having my son on antibiotics until he hit puberty (he's 7 now). They had stopped researching PANDAS and moved on to a focus on autism quite awhile ago. Her talk at the DAN! conference was about lessons learned from PANDAS and she discussed her findings.

[Diana]

Hi Sandy,

 

My name is Diana Pohlman. I have talked with lots of parents on this forum. My son developed PANDAS about 2 years ago. 6 months ago we did a successful IVIG with Dr. Miro Kovacevic webpediatrics.com. I mention this because I became acquainted with Yale's, Jim Leckman, Ph.D. - Dir. Child Psych and Research. He is friends with Susan Swedo.

 

To make a long story short - many of the parents and I created a "booklet" of our stories and gave it to Leckman and Swedo. They are as we speak trying to get million dollar funding for PANDAS and IVIG because of Dr. Kovacevic's courageous work. He continued on with the protocol Swedo had designed and improved it. He became involved because Swedo was no longer able to do so.

 

There are some political reasons for the "stopping" of her studies - primarily - the American Medical Associ. is loathe to recommend or allow a doctor recommend antiobiotics or blood products unless there are damned good clinical trials. SWEDO and LECKMAN are very much aware of the NIMH's lack of "reality" when dealing with PANDAS but legally their hands are tied.

 

They have asked myself and other parents here to support each other. I am tracking the names of parents who wanted to be tracked who have valid diagnoses of PANDAS. If you would like me to include you in the roster - please let me know. Email me thru this site.

 

ALSO, Leckman and Kovacevic will take your phone calls for any suggestions you may need or help with your doctors until the study at YALE is ready to go. The study is also under the ospices of the NIH. We are trying - it is just taking so darned long - and we all need our kids well - yesterday!

 

Let me know if you would like any help - and I'll try to get it for you. There are some parents in PA (including DCMom) who have had some luck with local docs. They are good too! Take care, diana

[melanie]

Hi Sandy,

 

My name is Diana Pohlman. I have talked with lots of parents on this forum. My son developed PANDAS about 2 years ago. 6 months ago we did a successful IVIG with Dr. Miro Kovacevic webpediatrics.com. I mention this because I became acquainted with Yale's, Jim Leckman, Ph.D. - Dir. Child Psych and Research. He is friends with Susan Swedo.

 

To make a long story short - many of the parents and I created a "booklet" of our stories and gave it to Leckman and Swedo. They are as we speak trying to get million dollar funding for PANDAS and IVIG because of Dr. Kovacevic's courageous work. He continued on with the protocol Swedo had designed and improved it. He became involved because Swedo was no longer able to do so.

 

There are some political reasons for the "stopping" of her studies - primarily - the American Medical Associ. is loathe to recommend or allow a doctor recommend antiobiotics or blood products unless there are damned good clinical trials. SWEDO and LECKMAN are very much aware of the NIMH's lack of "reality" when dealing with PANDAS but legally their hands are tied.

 

They have asked myself and other parents here to support each other. I am tracking the names of parents who wanted to be tracked who have valid diagnoses of PANDAS. If you would like me to include you in the roster - please let me know. Email me thru this site.

 

ALSO, Leckman and Kovacevic will take your phone calls for any suggestions you may need or help with your doctors until the study at YALE is ready to go. The study is also under the ospices of the NIH. We are trying - it is just taking so darned long - and we all need our kids well - yesterday!

 

Let me know if you would like any help - and I'll try to get it for you. There are some parents in PA (including DCMom) who have had some luck with local docs. They are good too! Take care, diana

 

 

I would love to be included The issue is my son is 15 Im confused first I was told that it cant be because of his age and now hes being treated for pandas blood test neg for strep and then he gets strep also since hes been on the zith 2 months his ears are so clean no wax at all his ears dont hurt maybe the infection is in his ears?

[sandree]

Hi Diana,

 

Thanks so much for all the information. I am still very unsure of whether my daughter would fit the PANDAS criteria. She is also 15 and I know somewhere on Dr. K's site I found a list of symptoms for adolescents and she seemed to fit a lot of those including her problems starting with gastrointestinal problems. Now I can't seem to find that list again. We are currently having an ASO titer done. Jaime has not been sick (as in respiratory, strep etc.) in years as she has been doing school at home for 3 years (due to sensory problems) and does not come in contact with a lot of kids who are sick. But she always looks sick and has tons of somatic complaints, sleep problems, severe OCD that, I believe, intensified dramatically before Christmas when her brother was ill with a virus so that she is now on a medical leave of absence from school. Perhaps I should contact Dr. K. Just not sure as I don't even think we can afford to do the IVIG. If the ASO titer is high, our family dr. may prescribe zithromax and maybe that can give us an indication if she responds to that.

 

Sandy

[Diana]

Hi Diana,

 

Sandy - contact me on my private email - pohlmandiana@yahoo.com I just by chance got on the forum today. I don't often and then saw your message, I'm so glad!

 

Ok - don't give up yet. There is one parent with 2 sons around your dd's age. There are things that can be looked at to help your dd. The parents are able to get the IVIG paid for by insurance but you must know the immunological workup's to do: IGG A or IGm deficiencies help get it paid for - and others that I'm not to sure on........ Most of us don't get immuno workups (like my son) til we're far down this ridiculous road.

 

Also, there is plasmaphoresus - again, tho - we gotta put the whole clinical picture together. I'd be glad to try to advocate for you. Your dd's autoimmune system is clearly taxed if she's reacting to viruses, etc. - a lot of our kids do.

 

I can see my son going down the path of your dd too - he is 9 now - but the IVIG made him much stronger, tho he is minorly reacting to strep just this March. I guess, I would say, if you're dd is not on daily antibiotics - this is probably not good. You could also do a "steriod burst" just to see if there is brain inflammation, her symptoms will disappear on the prednisone "burst" and then you'll know it is pandas.

 

So, please email me at pohlmandiana@yahoo.com - and I can connect you with the mom of the older boys and perhaps some helpful docs. I'm working today - but will check email in the evening. Best wishes, diana

[mom2ty]

hi sandree,

 

Just wanted to address the portion of your post re: clinical study at NIMH. I was able to find a PANDAS study that has been ongoing and is currently taking patients. It is research based and not treatment based. I don't hold out much hope that we will benefit too greatly from this as their goal is to gather data and not to implement treatment protocols. I contacted NIMH and spoke with a coordinator. She felt that my son Ty (13) was a good candidate and indicated that we should hear something in a week or two. We've been maybe 4-5 days into the process, but haven't heard anything yet. Hopefully, we'll get to participate, to our benefit it will at least put us in front of those that are the experts on this very rare disorder.

 

Also, as your child is a teen, I've been looking into whether there exists a type of support group for teens who have PANDAS. Haven't found anything yet. Maybe we'll have to start our own!

 

Healing thoughts....

 

Mom2ty

[T_Mom]

Hi Mom2Ty--

 

Can you give a link to the study you are referring to or more information? I cannot locate it via NIMH website.

Thanks so much--

 

 

hi sandree,

 

Just wanted to address the portion of your post re: clinical study at NIMH. I was able to find a PANDAS study that has been ongoing and is currently taking patients. It is research based and not treatment based. I don't hold out much hope that we will benefit too greatly from this as their goal is to gather data and not to implement treatment protocols. I contacted NIMH and spoke with a coordinator. She felt that my son Ty (13) was a good candidate and indicated that we should hear something in a week or two. We've been maybe 4-5 days into the process, but haven't heard anything yet. Hopefully, we'll get to participate, to our benefit it will at least put us in front of those that are the experts on this very rare disorder.

 

Also, as your child is a teen, I've been looking into whether there exists a type of support group for teens who have PANDAS. Haven't found anything yet. Maybe we'll have to start our own!

 

Healing thoughts....

 

Mom2ty

[LoriL]

Hi Sandy,

 

My name is Diana Pohlman. I have talked with lots of parents on this forum. My son developed PANDAS about 2 years ago. 6 months ago we did a successful IVIG with Dr. Miro Kovacevic webpediatrics.com. I mention this because I became acquainted with Yale's, Jim Leckman, Ph.D. - Dir. Child Psych and Research. He is friends with Susan Swedo.

 

To make a long story short - many of the parents and I created a "booklet" of our stories and gave it to Leckman and Swedo. They are as we speak trying to get million dollar funding for PANDAS and IVIG because of Dr. Kovacevic's courageous work. He continued on with the protocol Swedo had designed and improved it. He became involved because Swedo was no longer able to do so.

 

There are some political reasons for the "stopping" of her studies - primarily - the American Medical Associ. is loathe to recommend or allow a doctor recommend antiobiotics or blood products unless there are damned good clinical trials. SWEDO and LECKMAN are very much aware of the NIMH's lack of "reality" when dealing with PANDAS but legally their hands are tied.

 

They have asked myself and other parents here to support each other. I am tracking the names of parents who wanted to be tracked who have valid diagnoses of PANDAS. If you would like me to include you in the roster - please let me know. Email me thru this site.

 

ALSO, Leckman and Kovacevic will take your phone calls for any suggestions you may need or help with your doctors until the study at YALE is ready to go. The study is also under the ospices of the NIH. We are trying - it is just taking so darned long - and we all need our kids well - yesterday!

 

Let me know if you would like any help - and I'll try to get it for you. There are some parents in PA (including DCMom) who have had some luck with local docs. They are good too! Take care, diana

 

 

I would love to be included The issue is my son is 15 Im confused first I was told that it cant be because of his age and now hes being treated for pandas blood test neg for strep and then he gets strep also since hes been on the zith 2 months his ears are so clean no wax at all his ears dont hurt maybe the infection is in his ears?

 

 

Hi Diana

I would also like to be included in your "roster", I have just begun this frustrating journey with my 12 year old daughter and am finding contradicting information on this topic at every turn. please add me to your list Lori.Abbott@telus.net

[mom2ty]

http://clinicaltrials.gov/ct2/show/NCT0000...ccus&rank=3

 

I didn't find this through NIMH website. I found it through www.clinicaltrials.gov. BE SURE when you're entering in the condition that you type out the FULL name of this disorder and not the acronym PANDAS.

 

Hope this helps. I've logged a call to the trial organizer and hoping to hear back soon. She said it could take up to a week or two, we're on to the 2nd week.

[EAMom]

Hi Sandy,

 

She is also 15 and I know somewhere on Dr. K's site I found a list of symptoms for adolescents and she seemed to fit a lot of those including her problems starting with gastrointestinal problems. Now I can't seem to find that list again.

 

scroll to the bottom of the page on this link: http://www.webpediatrics.com/pandasclinicalcases.html ....is that what you were looking for?

 

The big question is does your dd fit the criteria for "regular" PANDAS (onset b-4 puberty) or is she a true adolecscent variant. Is it possible she is regular PANDAS and her first episode (before puberty) was mild enough to be undiagnosed?

[EAMom]

I should probably add that I completely agree that the NIMH website is extremely lame (and defies all logic).

 

1) number of studies that show that prophylactic abs/IVIG are effective in PANDAS: 2 (no follow-up studies were funded/done)

2) number of studies that show that CBT and psych. drugs are effective in PANDAS: ZERO!!!!!

 

So what does NIMH recommend? CBT and psych. drugs with ZERO studies demonstrating their effectiveness in PANDAS!!!!...because there are not enough studies to show conclusively that antibiotics and IVIG work (meanwhile they have no plans to do any more studies)...hellllooo? what am I missing here?

[colleenrn]

I completely agree with the lameness of the NIMH site. I think it is terrible that they continue to recommend Psych meds when we know they usually backfire on children with PANDAS. They also discourage tonsillectomies instead of recommending that an ENT evaluate the need for a tonsillectomy based on the status of the tonsils and adenoids. They are doing a great diservice to so many children.

 

Back in February, Dr. Swedo answered my email to her and commented "we are updating our website to provide more information". Hopefully that "update" will come soon!!

Colleen

[mom2ty]

hellllooo? what am I missing here?

Hi EAMom. I don't think you're missing anything...I think they are! I absolutely agree that there is very limited and conflicting information on NIMH site. With John Hopkins, Children's Hospital and NIH in my backyard...I still am not quite sure where I should seek the best care for my son!