Friday, January 8, 2010

With fingers Crossed....

Sydney's neurologist told us that she believes Sydney has grown out of her Panayiotopoulos Syndrome.
I think I have mentioned before that the neurologist believes Sydney did have this condition but the electrophysiologist has questioned it and believed all the spells Sydney ws having were from her Wolff Parkinson White Syndrome .
Will we ever know for sure? Probably not. Was there activity on her EEG's... I guess that would be a yes. Benign Occipital stuff. Dont ask me exactly what it means because in all honesty, I dont know. I do know that I think (LOL) it is in the back of the head down low where some of the activity seen on her EEG was occurring.
Sydney has NOT been complaining of headaches as she usually did which we believe had a lot to do with the complete chaos in her classroom last year. Her teacher this year is absolutely incredible and is ON TOP of Sydney like flies on shit. Sydney really enjoys school and is doing incredible. She has caught up from the deficit she experienced from her crappy classroom last year. She loves math and just everything about school.
Now.... the current recommendations that the neurologist does have....
*go to another ENT and have her tonsils and adenoids looked at and hopefully removed.
---- this is due to her evaluation with the speech and hearing people. She seems to have a lisp on her S and her Z sounds which would not be developmental at her age right now. So, the neurologist wants this to be something the school does address with some speech stuff.
---- Also, back in early november 2007 (when I was ginormously pregnant with CJ) Sydney had a sleep study and it did show some "minor" apnea stuff.
---- Sydney continues to be a mouth breather and pushes her tongue forward in her mouth (even though there is also a spacer there)
---- The last ENT we had gone to told me Sydney had poor nasal hygiene and recommended a sweat test ... OK... great... That solves WHAT?!!?!? then sends us away with some medicine. Awesome. That was not the 1st medication pushing ENT we went to. And a SWEAT test? She has NEVER exhibited ANY symptoms for Cystic Fibrosis and me and Chris went to genetic counseling and there was NO WAY we were carriers for it.

*We need to go back to the audiologist and have CAPD ruled out/in.... Still a questions as Sydney has issues with her working memory and comprehension. I thought after speech and hearing appointment she had "passed" with "flying colors" the "only one who ever scored 100% on a test she had administered".... but, the report is different. there are areas to address. (Central Auditory Processing Disorder) This seems to be something that her neurologist, pediatrican believe will be the case vs. the ADHD NOS she got on her psychological evaluation which can present similar to the CAPD.

*The neurologist also wants the school to do some occupational therapy for Sydney and her issues with pencil pressure and not being aware of her muscle strength. Tone issues or something.

So, all in all it was a good and informative appointment.

On Martin Luther King Jr. day we go to the Cardiologist to check up on her WPW. (Wolff Parkinson White)... Thankfully Chris will be able to go to this appointment. We do not want her released from Cardiology because we have read many personal stories of children with WPW and IT COMES BACK..... Scary. And of course the way Sydney's was "cured" was the "less reliable" and has more of a percentage of reoccuring. I don't know if there is a solid time frame for this reoccurance.. but, we dont want to take any chances either. Especially with her history of pulling crazy things out of the bag in regards to her medical history.

Like her mother she is a Zebra in a pack of horses....

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