Any info on Harvey Singer?

[smartyjones]

Thanks to all for the information and support I have gotten from reading these posts.

My 5-year-old started PANDAS symptoms last fall with anxiety, oppositional behaviors and strange behaviors - chewing his shirt, potty talk, repeating words and phrases. He's had intense school phobia - not attending for the last 5 weeks last year. School starts Monday and we are hopeful.

We were fortunate that a behavior therapist we consulted suggested PANDAS. His ASO was high and subsequent culture was positive. A sinus CT showed all sinuses infected. After 3 days of Keflex, he was totally back to his normal self for 35 day of abx + 5 weeks.

He then got a cold, titers had come down but were still high - behaviors back although not so bad. 30 more days of Keflex did not see the turn-around we had previously seen.

He is gluten-free, egg-free, milk-free due to IGG tests but I don't see so much a difference from that.

He currently shows an inappropriate flight-or-fight reaction at the drop of a hat and school anxiety.

Our pediatrician sent us to Dr Robert Wood, chief of allergy & immunology at Johns Hopkins b/c he previously worked with him. Wood suggested we consult with Dr. Harvey Singer, also at JHU.

From my reading, Singer is one of the major nay-sayers that there is even a PANDAS link.

Does anyone have any advice, suggestions, thoughts?

 

Thank you!

[dcmom]

Are you in the Wash- Bal area? If so I can recommend some drs. I mistakenly went to a Hopkins trained immunologist early on. He told me to my face that she looks healthy, and pandas is not proven. We had already had a diagnosis from a well qualified psychiatrist that worked with NIH. I am currently looking for an immunologist- Hopkins is the top in this are- I will not make that mistake again.

 

I don't know him specifically, but I think it would be a waste of time to see anyone who doesn't believe in pandas. After what it has done to my daughter and family, and everyone else on the forum, I would have a hard time giving credibility to anything that doctor said.

 

Good luck. PM me if you are near DC...

[dee45]

Hi,

we met with Dr. Singer in July he is a big opponent of PANDAS I knew that going in but my husband wanted to get two opinions --I know he is PANDAS and was finally confirmed when we met with Dr. Latimer in August we start steroids tomorrow. I think that Dr. Singer is probably an excellent neurologist probably does very well treating Tourettes and other neurological conditions but if you are thinking PANDAS stay clear of him. We live northeast of Baltimore and the trip to Dr. Latimer was not bad. Let me know if you need any more info. good luck.

 

Deanna

[Buster]

Hi Dee45,

 

The only real controversy around PANDAS is that Kurlan and Singer have been unable to replicate other people's tests. Unfortunately, this seems to be because they don't actually select kids who have PANDAS. They keep going back to their stock of kids with Tourettes and then make provocative titles for their papers.

 

I wrote up a post about all the things wrong with Kurlan's study (see here)

 

http://www.latitudes.org/forums/index.php?...art=#entry26571

 

All of Singer's subjects came from Kurlan's study (i.e., they didn't say it, but the studies are linked). Singer says he was counting on Kurlan to get the diagnosis right and Swedo keeps trying to correct Kurlan on how to diagnose, but Kurlan doesn't seem to listen.

 

Just to make this really clear, Kurlan had subjects who had no variance in their OCD symptoms over a 2 year period. If you ask anyone whose kid has PANDAS or look at the Swedo studies, you'll see that those kids have severe changes in OCD +/-20pts in CY-BOCS scores -- not the 1.6 pts of the Kurlan kids.

 

It would be nice if Kurlan would at least reach out to Swedo to confirm a diagnosis or to Kirvan to get a control for his tests before stating anything about PANDAS with the outrageous titles of his papers.

 

Regards,

 

Buster

 

 

Hi,

we met with Dr. Singer in July he is a big opponent of PANDAS I knew that going in but my husband wanted to get two opinions --I know he is PANDAS and was finally confirmed when we met with Dr. Latimer in August we start steroids tomorrow. I think that Dr. Singer is probably an excellent neurologist probably does very well treating Tourettes and other neurological conditions but if you are thinking PANDAS stay clear of him. We live northeast of Baltimore and the trip to Dr. Latimer was not bad. Let me know if you need any more info. good luck.

 

Deanna

[dee45]

Thanks Buster,

I do feel we are on the right track with Dr, Latimer I will look at the link you posted. thanks

 

Deanna

[nevergiveup]

Hi Buster, Hope your daughter is doing well. I read the network a lot but rarely comment. Harvey Singer is someone we desperately need to move this PANDAS cure along. He is a rather difficult man it is pretty clear from his web site at Hopkins. He actually says on his web site that the reason why PANDAS is embraced by parents is because we would rather believe that this was caused by an infectious agent than believe it is hereditary. This is so silly because if PANDAS is an autoimmune disease it is also hereditary. We as parents are looking at the severe sudden onset and symptoms to help diagnose and therefore find treatments not looking for excuses as to causes. Anyway, you seem extremely knowledgeable about his control Group and selection criteria, have you tried emailing him or meeting him? He also said without an animal model that this cannot be autoimmune, and with the recent mouse model could he be swayed to reconsider. Not to mention the recent italian study with the antigens. He is a huge figure on a national level for TS, his reevaluation of this would be key to helping many. Any ideas???? Also has anyone on the forum had their children seen by Trifiletti? He I believe worked for Singer in the past but is now doing his own thing? If anyone can give me more info about him it would be very helpful. Thanks so much. Also my child had IVIG three months ago, hang in there, I know how your feeling. Although we still see minimal tics, my child says that things have never been better for OCD. Although not 100, close to 90, lots of smiles and laughter. It was slow gradual improvement, I was at first very disappointed, now I know it worked and worked well. Lots of gratitude for all your research!

 

 

 

Hi Dee45,

 

The only real controversy around PANDAS is that Kurlan and Singer have been unable to replicate other people's tests. Unfortunately, this seems to be because they don't actually select kids who have PANDAS. They keep going back to their stock of kids with Tourettes and then make provocative titles for their papers.

 

I wrote up a post about all the things wrong with Kurlan's study (see here)

 

http://www.latitudes.org/forums/index.php?...art=#entry26571

 

All of Singer's subjects came from Kurlan's study (i.e., they didn't say it, but the studies are linked). Singer says he was counting on Kurlan to get the diagnosis right and Swedo keeps trying to correct Kurlan on how to diagnose, but Kurlan doesn't seem to listen.

 

Just to make this really clear, Kurlan had subjects who had no variance in their OCD symptoms over a 2 year period. If you ask anyone whose kid has PANDAS or look at the Swedo studies, you'll see that those kids have severe changes in OCD +/-20pts in CY-BOCS scores -- not the 1.6 pts of the Kurlan kids.

 

It would be nice if Kurlan would at least reach out to Swedo to confirm a diagnosis or to Kirvan to get a control for his tests before stating anything about PANDAS with the outrageous titles of his papers.

 

Regards,

 

Buster

 

 

Hi,

we met with Dr. Singer in July he is a big opponent of PANDAS I knew that going in but my husband wanted to get two opinions --I know he is PANDAS and was finally confirmed when we met with Dr. Latimer in August we start steroids tomorrow. I think that Dr. Singer is probably an excellent neurologist probably does very well treating Tourettes and other neurological conditions but if you are thinking PANDAS stay clear of him. We live northeast of Baltimore and the trip to Dr. Latimer was not bad. Let me know if you need any more info. good luck.

 

Deanna

[dee45]

Hi,

also wanted to add that Dr. Latimer feels because Dr. Singer is so respected in his field that because he is so opposed to PANDAS that this is one reason why so many other neurologist do not want to go up against him. She worked with him years ago at Hopkins. It s a shame.

 

Deanna

[EAMom]

There sure is a lot of politics involved in medicine. I never really thought about it until we had to deal with PANDAS.

 

Hi Nevergiveup...welcome! I've read one of Trifiletti's (one he wrote with the Italians) papers and thought it was were great. I don't believe anyone on this forum has seen him recently. I think there are some that saw him a long time ago. One teen posted a while back that he is the one that got her well.

Have you seen this? I don't think he's at UMDNJ anymore though? http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm

[Buster]

Hi Nevergiveup,

 

Thanks for your words of encouragement and the kind way you phrased your post. I have corresponded with Kaplan and Kurlan with limited success, but have not written to Singer.

 

This is mostly because Singer got his test subjects from Kurlan and it seemed better to focus on Kurlan and then come back and address methodological issues with Singer once selection criteria for subjects got fixed.

 

What is interesting is that from all the data (including the negative ability of Singer to replicate the observation of Church and Dale) it sure looks like the subjects were not the same as PANDAS subjects in other tests.

 

What should have happened was for a test sample to have been sent from Kirvan or Church to Singer so Singer could test his tests.

 

I also found it interesting to read the commentary on Singer's 2004 work at : http://neurology.org/cgi/eletters/65/11/1701

 

We would like to point out the following methodological issues. Singer et al claim to use the human brain autoantigens pyruvate kinase M1 and aldolase C from Santa Cruz Biotehcnology Inc. [1]The antigens produced by this company are rabbit muscle pyruvate kinase (not the human brain M1 isoform), and rabbit muscle aldolase (not the human brain C isoform). An NCBI BLAST search shows that the pyruvate kinase and aldolase available from Santa Cruz Biotechnology have only 93% and 79% homology respectively, with the human brain isoforms. We have also acknowledged this problem and therefore created a recombinant form of human aldolase C and pyruvate kinase M1

 

Singer did reply to this, but frankly the best response would have been to ask Church for a sample and verify the efficacy of Singer's tests.

 

Regards,

 

Buster

[dcmom]

nevergiveup-

 

We have seen Dr T a few times. He is a definate, no question, believer in pandas. He is very knowledgeable on the science of it, and extremely smart guy. He has recently moved to private practice in Middletown, NY.

[bronxmom2]

dcmom,

 

Do you have the contact info for Dr. Trifilletti? I can't find him since his move.

 

I also met with him and found him very knowledgeable, smart, and deeply interested in PANDAS... but, alas, he did not seem like he was going to do anything.

[colleenrn]

I had to send this email to Dr. Singer after reading his very maddening articles/presentations/web site on why PANDAS is not real......

 

Dear Dr. Singer,

 

My daughter had an abrupt onset of OCD and tics at the age of five. She went to bed one night the most "normal", well adjusted child I have ever known, yet woke up with full blown OCD behaviors and tics. As a psychiatric nurse, I immediately searched for answers. She continued to worsen, at which point she was diagnosed with strep throat. After a few days on antibiotics, she completely returned to her normal state. This was eight years ago. If PANDAS is not "real", please explain to me why her OCD and tics ONLY occur when she has strep.

 

She was diagnosed with PANDAS by Dr. Susan Swedo, who at the time believed that strep titers must be elevated in order to diagnose. She has since retracted that, yet the NIMH web site does not reflect it.

 

My daughter has normal ASO and Anti-DNase B titers while culturing positive for strep A. This is a common occurrence in many children with PANDAS. Are you familiar with Madeleine Cunningham's curent study of other antibodies found only in children with SC and PANDAS?

 

I talk to parents of children misdiagnosed with Tourette's and OCD all the time. Their children have PANDAS, yet are placed on psychiatric medications and their condition worsens b/c they need antibiotics and/or IVIG.

 

I implore you to stop trying to disprove PANDAS . While it has a genetic component similar to the genetic component seen with rheumatic fever, it is the strep that triggers it.

 

You have stated that the strep-tic link may be coincidental? It is impossible that my daughter's emergence of tics and OCD behaviors for eight years whenever she has strep is coincidental. You are doing more harm than good in your continued quest to disprove PANDAS.

 

Sincerely,

Colleen RN

Edited February 17, 2012 by colleenrn

[Kayanne]

Great Job!

 

Maybe we should all start to send him our stories....

 

 

I had to send this email to Dr. Singer after reading his very maddening articles/presentations/web site on why PANDAS is not real......

 

Dear Dr. Singer,

 

My daughter had an abrupt onset of OCD and tics at the age of five. She went to bed one night the most "normal", well adjusted child I have ever known, yet woke up with full blown OCD behaviors and tics. As a psychiatric nurse, I immediately searched for answers. She continued to worsen, at which point she was diagnosed with strep throat. After a few days on antibiotics, she completely returned to her normal state. This was eight years ago. If PANDAS is not "real", please explain to me why her OCD and tics ONLY occur when she has strep.

 

She was diagnosed with PANDAS by Dr. Susan Swedo, who at the time believed that strep titers must be elevated in order to diagnose. She has since retracted that, yet the NIMH web site does not reflect it.

 

My daughter has normal ASO and Anti-DNase B titers while culturing positive for strep A. This is a common occurrence in many children with PANDAS. Are you familiar with Madeleine Cunningham's curent study of other antibodies found only in children with SC and PANDAS?

 

I talk to parents of children misdiagnosed with Tourette's and OCD all the time. Their children have PANDAS, yet are placed on psychiatric medications and their condition worsens b/c they need antibiotics and/or IVIG.

 

I implore you to stop trying to disprove PANDAS . While it has a genetic component similar to the genetic component seen with rheumatic fever, it is the strep that triggers it.

 

You have stated that the strep-tic link may be coincidental? It is impossible that my daughter's emergence of tics and OCD behaviors for eight years whenever she has strep is coincidental. You are doing more harm than good in your continued quest to disprove PANDAS.

 

Sincerely,

Colleen RN

[colleenrn]

Thanks. I mentioned in another post on another thread that I have never personally had a physician tell me they don't believe in PANDAS. What I did not add is that I have sent emails and called physicians who I have read about who do not believe in PANDAS. I can't read that someone doesn't believe in PANDAS and not call them on it. My feeling is, how dare they try to say it is not real when my kids live it everyday.

 

Colleen

[nevergiveup]

Colleen,

 

You have inspired me, My turn, I'll give it a try too. We need doctors like Singer to look deeper, and rethink all of this. He did say with an animal model it would be legitimized. I will be contacting him regarding this. If he replies I will let you know.

 

 

Thanks. I mentioned in another post on another thread that I have never personally had a physician tell me they don't believe in PANDAS. What I did not add is that I have sent emails and called physicians who I have read about who do not believe in PANDAS. I can't read that someone doesn't believe in PANDAS and not call them on it. My feeling is, how dare they try to say it is not real when my kids live it everyday.

 

Colleen