Meeting with Dr. Kaplan

[Pandamom777]

We met with Dr. Kaplan at the University of Minnesota this week. He was just how you described him. He was kind and listened to what we had to say, but at this point believes in PAND and not so much PANDAS.

 

He said the science just doesn't back up the strep connection to PANDAS, BUT he kept saying that he is keeping an open mind and continues to consult with other doctors with differing opinions.

 

Our case is a little different. Our daughter is in the ASD spectrum with many OCD behaviors, but our main concern is a dystonic movement of her face. Since there are some studies on poststreptoccal dystonia, I thought Dr. Kaplan would be interested. We left empty handed, but he does want to talk more to offer us some direction.

 

Sharon

[sf_mom]

Hmmmm..... I just want you to know my friends son who had RF 'now PANDAS' could have been easily diagnosed with Asperger Syndrome. Thankfully, Dr. K has seen several kids that were misdiagnosed onto the spectrum. I recommend at least consulting with Dr. K to see if he can help. I was fearful you might end up leaving empty handed from a visit with Dr. Kaplan.

 

-Wendy

[Fixit]

Hmmmm..... I just want you to know my friends son who had RF 'now PANDAS' could have been easily diagnosed with Asperger Syndrome. Thankfully, Dr. K has seen several kids that were misdiagnosed onto the spectrum. I recommend at least consulting with Dr. K to see if he can help. I was fearful you might end up leaving empty handed from a visit with Dr. Kaplan.

 

-Wendy

 

how long after rf did he get pandss dx...or were symptons there during rf?

 

as consult with doc K i told him of strep episode at 5 yrs we couldn't shake with severe jont pains crying and screaming from pain...at time docs said reaction to penicillian now that i know more ,Dr k agrees and says RF. ds now 10 ....does rf trigger something later or make you more subseptible later?

 

another questoin if strep is in gut, sinuses, anus....it's possible to still not have high titers, right?

[sf_mom]

Yes, yes, yes.... it is possible to not have high titers.

 

My son's friend had what is now believed to be RF .... very sick in 2007, all the lab work from then indicated RF (7 or 8 markers and only need three to diagnose) but he why he was never formally diagnosed at the time and I do not know why. Current, ECCO also indicated RF. BUT, unfortunately most Dr.'s believe it is rare and diagnoses gets missed. So...... it took 2 years and PANDAS to figure things. He is doing much better and continues to improve. He is being treated Dr. K with IVIG and antibiotics.

 

-Wendy

 

 

Hmmmm..... I just want you to know my friends son who had RF 'now PANDAS' could have been easily diagnosed with Asperger Syndrome. Thankfully, Dr. K has seen several kids that were misdiagnosed onto the spectrum. I recommend at least consulting with Dr. K to see if he can help. I was fearful you might end up leaving empty handed from a visit with Dr. Kaplan.

 

-Wendy

 

how long after rf did he get pandss dx...or were symptons there during rf?

 

as consult with doc K i told him of strep episode at 5 yrs we couldn't shake with severe jont pains crying and screaming from pain...at time docs said reaction to penicillian now that i know more ,Dr k agrees and says RF. ds now 10 ....does rf trigger something later or make you more subseptible later?

 

another questoin if strep is in gut, sinuses, anus....it's possible to still not have high titers, right?