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Pandas and neurologist New York area
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amother




OP
 

Post Thu, Dec 03 2020, 5:54 am
My child’s been followed by a doctor we have done two antibiotics, I need more answers. My child’s case is not as severe as other cases and the antibiotics have heleped somewhat, but I want other answers other testing... can someone recommended a neurologist who believes in pandas and can guide me on tested ....... and maybe doesn’t take 2000 for an appointment
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amother




OP
 

Post Thu, Dec 03 2020, 7:56 am
Bump
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amother




Orange
 

Post Thu, Dec 03 2020, 9:25 am
You can try dr Vargas at Columbia though you’re asking for a bit of a unicorn.

Dr Visconti on LI is not a neurologist but an infectious diseases dr, he can help you test for Lyme and coinfections if you suspect that is underlying.

Dr Shulmans NP sees pandas patients now I think.

If you want functional, integrative care I can give you a few names too but they are all $$$

If you have a dr that is willing to keep giving you abx, stick with it. Neurologists won’t have more answers for you, unless you want to pursue ivig, which isn’t likely to happen as your child is mild and responding to abx. Other testing would include looking for other infectious triggers, technically your pediatrician can run those for you. Anything beyond that and you’re looking outside the strictly conventional box and into functional or integrative care.
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amother




Aubergine
 

Post Thu, Dec 03 2020, 10:23 am
amother [ Orange ] wrote:
You can try dr Vargas at Columbia though you’re asking for a bit of a unicorn.

Dr Visconti on LI is not a neurologist but an infectious diseases dr, he can help you test for Lyme and coinfections if you suspect that is underlying.

Dr Shulmans NP sees pandas patients now I think.

If you want functional, integrative care I can give you a few names too but they are all $$$

If you have a dr that is willing to keep giving you abx, stick with it. Neurologists won’t have more answers for you, unless you want to pursue ivig, which isn’t likely to happen as your child is mild and responding to abx. Other testing would include looking for other infectious triggers, technically your pediatrician can run those for you. Anything beyond that and you’re looking outside the strictly conventional box and into functional or integrative care.
.
Where's is dr Shulman np located?

Ate there any other peds in bklyn who would even DIAGNOSE it?
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bunchagirlies




 
 
 
 

Post Thu, Dec 03 2020, 10:33 am
Dr zyskind from Boro Park pediatric assoc. diagnoses and treats pandas. I have no idea if you can get to him if you aren't a patient of the practice, though.
Good Luck!
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amother




Orange
 

Post Thu, Dec 03 2020, 10:35 am
amother [ Aubergine ] wrote:
.
Where's is dr Shulman np located?

Ate there any other peds in bklyn who would even DIAGNOSE it?
Shulman’s NP is probably your best bet. I don’t have contact information for her but maybe try calling her old office? Dr. Feldman at Dr. Bulmash’s office is also fairly knowledgeable, but he might not want to formally diagnose if you don’t have abrupt onset and classic presentation.
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amother




Aubergine
 

Post Thu, Dec 03 2020, 10:38 am
amother [ Orange ] wrote:
Shulman’s NP is probably your best bet. I don’t have contact information for her but maybe try calling her old office? Dr. Feldman at Dr. Bulmash’s office is also fairly knowledgeable, but he might not want to formally diagnose if you don’t have abrupt onset and classic presentation.


Dr Feldman is my actually my ped.
What is classic presentation that would get him to test for it?
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amother




Orange
 

Post Thu, Dec 03 2020, 10:40 am
amother [ Aubergine ] wrote:
Dr Feldman is my actually my ped.
What is classic presentation that would get him to test for it?
He will probably test if you request. And give abx if you ask. But ime he hesitates to formally diagnose if it isn’t classic presentation.
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amother




OP
 

Post Thu, Dec 03 2020, 8:58 pm
Thanks for your response. I just feel like my child’s on antibiotics for months and we aren’t 100 back to himself . I thought maybe there are underlying things to tear for. Statfeld tested Lyme Bh no Lyme. I thought maybe neurologist would have some kind of testing.
About dr vargus , you said she’s like unicorn what do you mean?
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amother




Orange
 

Post Thu, Dec 03 2020, 9:05 pm
amother [ OP ] wrote:
Thanks for your response. I just feel like my child’s on antibiotics for months and we aren’t 100 back to himself . I thought maybe there are underlying things to tear for. Statfeld tested Lyme Bh no Lyme. I thought maybe neurologist would have some kind of testing.
About dr vargus , you said she’s like unicorn what do you mean?
What kind of Lyme testing did Statfeld do? Most standard Lyme tests have a very high rate of false negatives. There are lots of underlying things to test for, just most mainstream drs have no idea what they are. Dr. Vargas isn’t a unicorn, what you’re looking for is — it doesn’t really exist.
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amother




OP
 

Post Thu, Dec 03 2020, 9:12 pm
The whole situation is sad . Because the illness is there we just need the right refuah and shaliach to help us get there.
Statfeld does a more thorough Lyme tests sends to special lab ...
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amother




Orange
 

Post Thu, Dec 03 2020, 9:18 pm
amother [ OP ] wrote:
The whole situation is sad . Because the illness is there we just need the right refuah and shaliach to help us get there.
Statfeld does a more thorough Lyme tests sends to special lab ...
I agree. It’s sad. Pandas sucks. And it takes aggressive treatment to reverse. If you can save up some money there are a few great integrative MDs who can run functional testing and give you direction. Or you can become an expert mom-doc and self treat with diet, herbals, supplements. What symptoms are you still seeing?
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amother




Purple
 

Post Thu, Dec 03 2020, 9:53 pm
Audrey, dr schulmans np, is now at ezra medical center
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amother




OP
 

Post Fri, Dec 04 2020, 11:51 am
Can you tell me about integrative technique doctors? I can’t do diet and vitamins on my own. I’m lucky that he eats he won’t touch anything healthy and eats the same few foods...... refuses to try anything or take vitamins that I give him. I get in the probiotic and I’m happy... still behaviors left are night bed wetting, angry moods, hitting punching yelling... doesn’t listen , bed time and showers take so much out of us. All these were impossible months ago but Bh the antibiotics has helped tremendously, and at one point I saw my sweet child and I couldn’t believe that that is really who he is... but that didn’t last so long... he goes up and down. Good days and then a week or two with flare ups ...
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amother




Orange
 

Post Fri, Dec 04 2020, 1:09 pm
amother [ OP ] wrote:
Can you tell me about integrative technique doctors? I can’t do diet and vitamins on my own. I’m lucky that he eats he won’t touch anything healthy and eats the same few foods...... refuses to try anything or take vitamins that I give him. I get in the probiotic and I’m happy... still behaviors left are night bed wetting, angry moods, hitting punching yelling... doesn’t listen , bed time and showers take so much out of us. All these were impossible months ago but Bh the antibiotics has helped tremendously, and at one point I saw my sweet child and I couldn’t believe that that is really who he is... but that didn’t last so long... he goes up and down. Good days and then a week or two with flare ups ...
What antibiotic is he on? The integrative drs will definitely want you modifying diet and giving supplements. It’s very very difficult, but there are ways to do it. But for that you will need more than a dr to tell you what to do. You will need the support of other parents in the trenches. My child was the same as yours a few years ago and bh things are so much better now. How old is your child and which antibiotic is he on? Have you tested for other infections besides strep and Lyme?

One integrative I’m thinking of does a lot of allergy testing and desensitization, they all work on root causes such as gut dysbiosis, methylation issues, toxicity etc.

Would you be interested in homeopathy? Many people are reporting amazing results with that lately.
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amother




OP
 

Post Sun, Dec 06 2020, 11:42 am
What is an integrative doctor ? What’s his degree in? I would be interested in names and maybe checking into it. I also saw in ami some ting advertised for massage therapy of essential oils... who knows if any of this works but I think two antibiotics for almost a year and doctor tested for many things, at this point I need some other help....
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amother




Orange
 

Post Sun, Dec 06 2020, 1:05 pm
amother [ OP ] wrote:
What is an integrative doctor ? What’s his degree in? I would be interested in names and maybe checking into it. I also saw in ami some ting advertised for massage therapy of essential oils... who knows if any of this works but I think two antibiotics for almost a year and doctor tested for many things, at this point I need some other help....
The integrative drs I am thinking of have regular MD training plus integrative/functional training on top of that. I agree it’s a good idea to get another set of eyes on your kid.
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amother




OP
 

Post Mon, Dec 07 2020, 2:21 pm
Do you have one in New York area to recommend?
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amother




Orange
 

Post Mon, Dec 07 2020, 8:17 pm
amother [ OP ] wrote:
Do you have one in New York area to recommend?
All the ones I’m thinking of are in NY.
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amother




Gray
 

Post Mon, Dec 07 2020, 8:50 pm
amother [ Orange ] wrote:
Shulman’s NP is probably your best bet. I don’t have contact information for her but maybe try calling her old office? Dr. Feldman at Dr. Bulmash’s office is also fairly knowledgeable, but he might not want to formally diagnose if you don’t have abrupt onset and classic presentation.

Dr. Feldman and Bulmash don't believe in PANDAS. I learned the hard way. I don't know why Feldman has a plaque up that says he specializes. I spoke to Feldman directly.
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