How does PANDAS affect reading ability?

[Mary M]

Wornoutmom-

 

Dr K specifically asked our dd (you know all about her-teehee) about her reading. On May 26 at the initial consultation she told him what she had been reading. On June 13 she explained that she couldn't read any more. I had observed this decline through March April and May. But Dr K asked dd specifically about her reading. This is a symptom of PANDAS whether there is an article or not. And my oldest dd just suggested we simply write an article and provide it to you for support for your IEP--LOL. If it were only that simple. All this anecdotal stuff, although helpful, reassuring, and supportive (yes, we too have to rewind movies to be sure we didn't "miss" anything) really needs to be compiled into a comprehensive list for diagnostic, treatment and school accomodation purposes!

Mary

[wornoutmom]

Amen! But as if these PANDAS docs weren't busy enough as it is....You have given me the idea, however, to ask our doc if he might write something up for future use when he has a minute ( ha ha). He did at one time offer to talk with the school if it would help. Maybe something for future use or to use in calling another IEP if they don't give me what I want/ give him what he needs. Hmmm... I'm just not sure anyone understands WHY this happens so they don't put it down in writing.

 

I'm already gearing up for battle tomorrow. DS came home today saying the teachers are now giving him a hard time about using his unlimited bathroom passes (part of his IEP.) He's using them more to take quick "get it together" breaks instead of running to the counseling center every day for 2 hours and missing class. It was a suggestion by his therapist, encouraging him to manage his anxiety on his own, independently, for shorter periods of time, but whenever he needs it. An idea that is working by the way. But oh no, the school would rather have him back to calling home every day in tears. Because heaven forbid he be allowed to use the bathroom unsupervised when other kids can't... Sigh...

 

 

Wornoutmom-

 

Dr K specifically asked our dd (you know all about her-teehee) about her reading. On May 26 at the initial consultation she told him what she had been reading. On June 13 she explained that she couldn't read any more. I had observed this decline through March April and May. But Dr K asked dd specifically about her reading. This is a symptom of PANDAS whether there is an article or not. And my oldest dd just suggested we simply write an article and provide it to you for support for your IEP--LOL. If it were only that simple. All this anecdotal stuff, although helpful, reassuring, and supportive (yes, we too have to rewind movies to be sure we didn't "miss" anything) really needs to be compiled into a comprehensive list for diagnostic, treatment and school accomodation purposes!

Mary

[LNN]

Another option is to write the letter you want your doctor to sign. Write it up so it's tailored to your situation, all factual, unemotional. Then ask the doctor to put it on his/her letterhead and sign it. The doctor may want to change a few things, but you're at least doing 95% of the work and it gives you a chance to make sure it includes the things you consider important. In the end, the letter is still from the doctor, but you don't have to wait for it or be a nag. It worked for us and at least one other mom I know.

[wornoutmom]

Great idea LLM! Thanks for the advice!

 

Another option is to write the letter you want your doctor to sign. Write it up so it's tailored to your situation, all factual, unemotional. Then ask the doctor to put it on his/her letterhead and sign it. The doctor may want to change a few things, but you're at least doing 95% of the work and it gives you a chance to make sure it includes the things you consider important. In the end, the letter is still from the doctor, but you don't have to wait for it or be a nag. It worked for us and at least one other mom I know.