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AmySLP

Dr. Harvey Singer @ Hopkins

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He is neurologist who's interest is in Movement Disorders in kids. He lists PANDAS and "proposed autoimmune disorders" in his profile on there site. My daughter has a lot of tremors in her right arm when she attempts to keep it still. It is the arm that otherwise has a lot of repetitive movements, tics, choreiform movements. Just want to opinion of a neurologist who sees lots of movement disorders. Anyone ever see him in regard to PANDAS in the last 2 years? I did see that he considered PANDAS controversial and was a big opponent to PANDAS in the past, but his bio. does not seem to reflect that now.

 

Thanks, Amy

Edited by AmySLP

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He has been one of the biggest non believers- hard to imagine that has changed much- or enough, at least, to get proper treatment. He has responded to an email of mine in the past- so you might want to start that way...

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He is neurologist who's interest is in Movement Disorders in kids. He lists PANDAS and "proposed autoimmune disorders" in his profile on there site. My daughter has a lot of tremors in her right arm when she attempts to keep it still. It is the arm that otherwise has a lot of repetitive movements, tics, choreiform movements. Just want to opinion of a neurologist who sees lots of movement disorders. Anyone ever see him in regard to PANDAS in the last 2 years? I did see that he considered PANDAS controversial and was a big opponent to PANDAS in the past, but his bio. does not seem to reflect that now.

 

Thanks, Amy

I am sure Dr. Singer considers himself an expert on PANDAS. I would be very cautious.

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you can search this forum using his name for more info -- probably about 2 or so years old. i believe he is a world-renowned expert on movement disorders so you may get some good info there but maybe not too much support in the cause if you believe it to be infection triggered.

 

singer was involved with the NIHM pow wow. around that time, another leader in the pandas field that i hugely respect, told me he was hopefully and confident singer would be open-minded to the discussions there. don't know how that turned out.

 

wedo have personal experience with another dr at JHU - who was helpful and hopefully referred us to singer -- with a hearty recommendation that he was a pandas expert, it was a 'pet project' of his for the last number of years and he'd likely be helpful. we didn't see him but i spoke extensively with his asst and decided it wouldn't be worth our time, money or psyche. this all could have changed it the past few years. ds has had primarily behavior symptoms -- only things now that i am more educated think could be slight tics. at the time, i likely said he had no movement issues.

 

keep us posted with what you find out/do.

Edited by smartyjones

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I do know somebody who does not post to the forum that has seen him in the last 6 months. They had a awful experience. From his perspective, nothing has been proved with PANDAS. Doesn't even believe that chronic infection could be an issue with movement disorder/OCD. Thankfully, this little girl parents were warned in advance of the visit of his potential perspective. It was a waste of time (5 hour drive) and money for them. This little girl is being treated for PANDAS/Lyme and is close to full remission of symptoms currently.

 

-Wendy

Edited by SF Mom

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Thanks for all your replies. My daughter has been fortunate to have seen both Dr. L & Dr. B (every other month or so)to confirm PANDAS, after almost 7 months of difficult to erradicate strep in late 2008/early 2009. Only searching this direction to consider the recommendation of an infectious disease doc we saw, on the recommendation of our ped, b/c of Lyme results. Overall, I have realized that this man will likely see my daughter's tics and likely prescribe some other med that I really don't want to use, just as I have come to feel about the ABX. The problem really being that I constantly think that if the ABX is not working 100%, why am I giving this daily? I worry about the long term use. My daughter is not severe, but does seem to have a ramp up in symptoms without ABX, with more behavioral and choreiform movements. I just keep going back to how myself and my family (Dad and sisters) seem to have some variation of this and without the ABX have been alright into adulthood (maybe some mild, functional OCD behaviors). I I worry that without ABX she may become worse and it may not be as easily reversible as it has so far, by just changing or upping ABX dose. It seems going in this direction will only leave me questioning this more-probably will not chose to go this route.

 

Thanks Again,

 

Amy

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HI,

I attended a local Tourette Conferences put on by our Tourette Syndrome Support

Group and hosted by Dr Harry Chugani, Chief of Pedi Neurology. Dr Singer was the

main presenter. He knows his tourettes, and advocated for lots of drugs.

He DOES NOT believe in PANDAS at all!!! So, do not expect any thing for pandas,

just tourettes, movement disorders.

Mustang Carole/Michigan

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HI,

I attended a local Tourette Conferences put on by our Tourette Syndrome Support

Group and hosted by Dr Harry Chugani, Chief of Pedi Neurology. Dr Singer was the

main presenter. He knows his tourettes, and advocated for lots of drugs.

He DOES NOT believe in PANDAS at all!!! So, do not expect any thing for pandas,

just tourettes, movement disorders.

Mustang Carole/Michigan

 

Thanks this further confirms that I will cancel our appt with him

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On a side note, I took my DSs to 2 local neurologists (DS18 to an adult one who specializes in movement disorders,) because they both have increased tremors, with my younger one's looking more and more like Parkinson's type.

 

The adult one said she wasn't worried about the tremors, because they were non-functionally limiting, but only after making her opinion (not asked for, mind you) known that she doesn't believe in PANDAS (told us prior to that that yes, she had heard about the "controversary surrounding PANDAS", when my DS18 asked her if she had heard of it.)

 

My response...1) We're here for the movement issues not the PANDAS issue...we have doctors to treat that, and 2) I can give you quite a bit of research to show it very much exists if you'd like (she refused to take it!). BTW...major hospital.

 

DS15 was seen by a local peds neuro who saw his tremors, saw his increased chorea and saw him having difficulty heel/toe walking. When looking at video, he decided it wasn't chorea, because his arm was going in large circles. Couldn't offer me an explanation, but then told me that he didn't know what to do to treat it, because he doesn't treat PANDAS. I pointed out that I didn't bring up the term PANDAS...just described all the symptoms/onset, and told him what treatments have worked/not worked. HE'S the one who brought up the term: "PANDAS." (again...I was just there, because of my concern for the Parkinson's-like tremors.) He got upset, saying that he had been afraid to call me back (I called back after a week of not hearing from him) and in the end, refused to help my son.

 

 

So...ladies and gents....moral of this story is....we are really and truly on our own. Other than the true angels who are putting their lives out there to help our kids, it truly doesn't matter how mainstream our children's symptoms are...they WON'T BE TREATED AS LONG AS THAT POSSIBILITY OF PANDAS EXISTS!

 

Oh, also, AmySLP, we saw Dr. L. a week ago, and she didn't seem terribly concerned about the tremors, either. I guess there's really nothing that can be done for them, so hopefully when we get our kids' conditions under control, the tremors will go away, too.

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If you have unexplained tremors, you might want to consider the possibility of hyperthyroidism, which can cause hand and arm tremors. Kids can get hyperthyroidism. Here is a website for test recommendations: http://www.endocrineweb.com/conditions/hyperthyroidism/diagnosing-hyperthyroidism-overactivity-thyroid-gland

 

It's an easy (and I think not too expensive) blood test. Make sure they test T3 and T4 along with the TSH. There is some difference of opinion as to normal levels of TSH. I am hypOthyroid and always feel best at TSH of 2.0 or lower (as do many patients). The "published" range of normal is higher but a lot of specialists agree with 2.0 or lower. I have been cautioned to look out for tremors if my medication pushes me into a hypERthyroid state.

 

On a side note, I took my DSs to 2 local neurologists (DS18 to an adult one who specializes in movement disorders,) because they both have increased tremors, with my younger one's looking more and more like Parkinson's type.

 

The adult one said she wasn't worried about the tremors, because they were non-functionally limiting, but only after making her opinion (not asked for, mind you) known that she doesn't believe in PANDAS (told us prior to that that yes, she had heard about the "controversary surrounding PANDAS", when my DS18 asked her if she had heard of it.)

 

My response...1) We're here for the movement issues not the PANDAS issue...we have doctors to treat that, and 2) I can give you quite a bit of research to show it very much exists if you'd like (she refused to take it!). BTW...major hospital.

 

DS15 was seen by a local peds neuro who saw his tremors, saw his increased chorea and saw him having difficulty heel/toe walking. When looking at video, he decided it wasn't chorea, because his arm was going in large circles. Couldn't offer me an explanation, but then told me that he didn't know what to do to treat it, because he doesn't treat PANDAS. I pointed out that I didn't bring up the term PANDAS...just described all the symptoms/onset, and told him what treatments have worked/not worked. HE'S the one who brought up the term: "PANDAS." (again...I was just there, because of my concern for the Parkinson's-like tremors.) He got upset, saying that he had been afraid to call me back (I called back after a week of not hearing from him) and in the end, refused to help my son.

 

 

So...ladies and gents....moral of this story is....we are really and truly on our own. Other than the true angels who are putting their lives out there to help our kids, it truly doesn't matter how mainstream our children's symptoms are...they WON'T BE TREATED AS LONG AS THAT POSSIBILITY OF PANDAS EXISTS!

 

Oh, also, AmySLP, we saw Dr. L. a week ago, and she didn't seem terribly concerned about the tremors, either. I guess there's really nothing that can be done for them, so hopefully when we get our kids' conditions under control, the tremors will go away, too.

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Will do. I'll ask the pediatrician to test for it. I know we've seen an endocrinologist in the past, and all tests were normal, but things do change. Thanks for the suggestion.

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He is neurologist who's interest is in Movement Disorders in kids. He lists PANDAS and "proposed autoimmune disorders" in his profile on there site. My daughter has a lot of tremors in her right arm when she attempts to keep it still. It is the arm that otherwise has a lot of repetitive movements, tics, choreiform movements. Just want to opinion of a neurologist who sees lots of movement disorders. Anyone ever see him in regard to PANDAS in the last 2 years? I did see that he considered PANDAS controversial and was a big opponent to PANDAS in the past, but his bio. does not seem to reflect that now.

 

Thanks, Amy

 

 

Holy crap!!!! I did not get through everyone else's posts but I can tell you that as of 2 years ago he was the anti-Christ of PANDAS. Furthermore, and I won't go through my son's story here but he is one of the experts who had the audacity to tell us that my son's emotional and physical changes were unrelated and essentially refused to look further. He treated my son for dystonia and told us to seek out a psychiatrist for the emotional. I read his research on Tourettes and can tell you that his research was pure crap. How his research made it through peer review is beyond me but probably speaks volumes about politics in the medical community.

 

Deep breath. Sorry but we went to a leading pediatric neurological expert only to end up losing two years.

 

Another deep breath. So perhaps something has happened to change his mind but it would have to be huge for me to change my opinion of him as a doctor - period.

 

Hopefully I've not violated policies of this forum.

 

bill

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Holy crap!!!! I did not get through everyone else's posts but I can tell you that as of 2 years ago he was the anti-Christ of PANDAS.

 

I was thinking the same thing.

 

I don't think he made a big turnaround at the NIMH powwow.

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Have to say that the Thryroid info is so valuable-THanks you. MY daughter just had this rechecked by Dr. B, b/c what do you know, it was off last time he checked it. I can't remember if it were hyper or hypo, but will be calling to check those results on Monday. Thanks for the info on Dr. Latimer's feeling on this (of course if it's not related to thyroid) b/c I thought we should at least go see her for a re-visit.

 

I treat Parkinson's Patients everyday (I have a special certification in a voice therapy program for them), so I literally look at tremors in these individuals every day & can't help thinking about my daughter. I remind myself that this is the basal ganglia in both these disorders, and maybe that's why their movements are somewhat similiar. BUt now I worry will my daughter have an increased chance of PD. Just got a new referral of a woman in her late 40s-she will be the youngest PD pt. I ever treated. Scary with an onset so young.

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