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mustang carole

GGGRRRRR !

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Hi Everyone,

 

Just venting here! :) Our new pediatrician never heard of PANDA, so I enlightened him. New Neurologist #2 refuses to draw titers for strept till further interpretation of PET scan. Both do not believe in vitamins or any therapy. Good grief, Charlie Brown! New neurologist #! refused to even touch my son, and referred us to #2..long story, but at least she is very interested and wants to be updated on any diagnosis, labs, and rx. I think she is candidate for the conversion to our vits and supps.! :lol:

 

Mustang Carole

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Mustang Carole--It's pretty frustrating to have to educate the doctors, on top of all the other duties a parent has when involved with these conditions.

 

It's amazing how many times we hear from people whose pediatricians don't know about PANDAS--and I think neurologists are very tentative since it is relatively so new.

 

I also think the neurologists are not too keen on having to share these disorders with immunologists!

 

If you have found someone who is open and wants to see lab results, that's at least something. Keep us posted--and good luck. Sheila

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Guest genie

the worst thing is that our kids are already so sensitive. they just can't handle these drugs. i wouldn't mind so much if they used them when everything else failed. the problem is, they don't KNOW what "everything else" might even mean! :)

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Hi ,

Update, learn from our mistakes............

1. Pediatrician never heard of PANDAS

1A Pediatric neurologist did not draw titers for strept, but draw a bunch from my wish list.

2. Movement Neurologist did not want to draw strept titers, long story, but he did do it...but only drew one.

3. Immunologist corrected all the above by drawing 2 strept titers. The only reason we got referred to her was b/c of a borderline antinuclear titer........which means inflammtion in the immune system.

 

Stay tuned.

 

:D

 

Mustang Carole

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Hi Mustang Carole

 

phew! you sure have an uphill battle with those docs!! :wub:

 

You are such a great mom to just keep persevering to do what you believe is right and valuable for your children's well being.

 

Hang in there...we are all rooting for you :)

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