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had a neuro visit today. WHAT A JOKE. In the first 5 seconds I was told not a chance of pandas. my son's symptoms are not pandas symptoms. also because my son didnt test positive for strep when it happend and his sed rate was normal. I was also told pandas is rare, very controversial and prob didnt exist,.

 

:(

 

she hinted that I should read the internet so much.

 

She also tried to tell me that my son was never anxious and never had a panic attack. How the heck does she know? I was there for all of it. This is not even a question in my mind. He didnt have a panic attack because he didnt sweat! can you believe that?

Also the vaccine issue- they are perfectly fine, and because he didnt end up in ICU he didnt have an adverse reaction!

 

I really almost got up and left. So she is SOOOOOOO sure its not pandas, so what is it? No Idea.

 

She was really rude, not good with kids ( I actually cant believe she works with kids at all) no bedside manner, was in a hurry, didnt listen to what I said.

 

Oh, then I told her my son was on clonidine. She darn near fell of her chair. She was horrorfied. She said you need to know that you NEVER ever give extra or increase doseages because my son could drop dead from BP problems! WHo says that? I told her he is only taking half of the originally rx'd dose and he was just fine and it wasnt a concern.

 

What a friggin waste. I am so disappointed in the medical community.

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had a neuro visit today. WHAT A JOKE. In the first 5 seconds I was told not a chance of pandas. my son's symptoms are not pandas symptoms. also because my son didnt test positive for strep when it happend and his sed rate was normal. I was also told pandas is rare, very controversial and prob didnt exist,.

 

:(

 

she hinted that I should read the internet so much.

 

She also tried to tell me that my son was never anxious and never had a panic attack. How the heck does she know? I was there for all of it. This is not even a question in my mind. He didnt have a panic attack because he didnt sweat! can you believe that?

Also the vaccine issue- they are perfectly fine, and because he didnt end up in ICU he didnt have an adverse reaction!

 

I really almost got up and left. So she is SOOOOOOO sure its not pandas, so what is it? No Idea.

 

She was really rude, not good with kids ( I actually cant believe she works with kids at all) no bedside manner, was in a hurry, didnt listen to what I said.

 

Oh, then I told her my son was on clonidine. She darn near fell of her chair. She was horrorfied. She said you need to know that you NEVER ever give extra or increase doseages because my son could drop dead from BP problems! WHo says that? I told her he is only taking half of the originally rx'd dose and he was just fine and it wasnt a concern.

 

What a friggin waste. I am so disappointed in the medical community.

 

Sorry to hear, but not surprised. Isn't it incredible that someone who doesn't have any answers, can't provide you with any help, and is rude on top it - she gets to collect an enormous paycheck?! In most other fields, if you completely suck at what you do, it would mean you couldn't make a living. But for many of these doctors, they can fail us in every possible way, and it doesn't matter. They are secure in their jobs forever! What a racket!

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Sorry to hear, but not surprised. Isn't it incredible that someone who doesn't have any answers, can't provide you with any help, and is rude on top it - she gets to collect an enormous paycheck?! In most other fields, if you completely suck at what you do, it would mean you couldn't make a living. But for many of these doctors, they can fail us in every possible way, and it doesn't matter. They are secure in their jobs forever! What a racket!

 

Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us.

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Sorry to hear, but not surprised. Isn't it incredible that someone who doesn't have any answers, can't provide you with any help, and is rude on top it - she gets to collect an enormous paycheck?! In most other fields, if you completely suck at what you do, it would mean you couldn't make a living. But for many of these doctors, they can fail us in every possible way, and it doesn't matter. They are secure in their jobs forever! What a racket!

 

Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us.

 

 

Yes, you are absolutely right. In the autism community it is known as "the Wakefield effect". Some of the only few mainstream docs that were actually helping families totally did an about face after the Wakefield witch hunt. It is very discouraging, and I can't really blame many of them. To risk a medical career is asking A LOT. Which is why, ofcourse Dr. Wakefield is such an amazing man. I always think of Josh when I think of Dr. Wakefield: http://www.ageofautism.com/2010/04/i-am-josh-a-boy-after-his-mmr.html

 

Kids are suffering. And the system is set up to let them keep on suffering. The rare few will say "no way, I am helping no matter the risk to myself!" Most will look the other way.

 

But one way we can support doctors that support us, is to band together. PANDAS famalies, autism famalies, ADHD, Chronic Fatigue, etc. are joining Canary Party:

http://www.canaryparty.org/ which is a new political platform that will be demanding health freedoms and health care choices. And hopefully give doctors some support and encouragement to help families like ours. I am state rep for California, so please feel free to ask me any questions about Canary Party at

Sylvia.Pimentel@canaryparty.org

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Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us.

 

I never thought about it, but I guess that's one of the benefits of our pediatrician being in his own practice without partners. He doesn't have any one else in his office to answer to but himself when he writes out my 90 day rx of abx whenever needed!

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I am a chronic lyme patient and co founder of a lyme support group (4.5 years). I have been through the ringer with doctors myself, so you think I would be used to the BS. But the pandas stuff really sends me into a tizzy. Maybe its because its my child? I am really disapointed with 99.9% of the medical community. I have really been let down. I trust nothing that comes out of 99% of doctors and nurses mouths. its pretty sad.

 

my husband said to me after the appointment "why would I question a doctor? they should know more than me and this is their job"

 

if only.,....

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  • 6 years later...

It's not just the virus in a vaccine that can cause flare up.. It's the adjuvants that are continually reintroducing the virus and that pass the blood brain barrier. Any good neurologist could tell you that but yes, they'd be sticking their neck out.

No studies have ever been done on INJECTED aluminum.. Especially not the effect it can have on the brain. 

My son had an MD in one clinic. She hadn't even heard of PANDAS. She only agreed he has Tourette's. Then i see in a PANDAS group another MD in the same clinic is very knowledgeable and touted as one f the best in town in regards to it. How ridiculous.

My 8yo son is fully unvaccinated and his PANDAS symptoms are mild but they did start after a strep infection. The tics, bed wetting, clingy with certain people, depression, very hard on himself if anyone even slightly insults him (OCD)

Now his father wants him fully vaccinated and has brought it up in court. If i lose i will be documenting everything as to how he responds. 

On a further note i would recommend NDs over MDs for knowledge about PANDAS. 

 

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I’m of the opinion that the best doctors are the ones that provide sound counseling. By that I mean sharing their intuition, knowledge and wisdom. 

Our daughters pedi, who knew what panadas was, said giving a flu vaccine to a child with an unknown autoimmune illness was risky. This thought as been echoed by many. Vaccinations have also been recommended by a few doctors, however when questioned , all that have suggested quickly backed off then recommendation.

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