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jacob dylan 11-29-2009 01:01 PM

Help
 
MY SON JACOB IS 11 YEARS OLD HE HAS A PWS AND AVM BEHIND HIS EYE AND THEY THOUGHT HE HAD STURGE WEBER BUT HE HAS NEVER HAD ANY SEIZURES. HE HAS HAD 8 LASER TREATMENTS AT SHRINERS BURN HOSIPTAL IN GAL.TX. BUT I REALLY SEE NO CHANGE . HE HAS HIS EYES CHECKED EVERY 2 MONTHS. THEY DID A ANGIO GRAM WHEN HE WAS 5 AND THE DR TOLD ME AS LONG AS HE HAS NO SEIZURES THEY WOULDNT TOUCH IT . WELL HE HAS GLAUCOMA HAS A LEARNING DISABILITY JUST READING. BASICALLY I NEED TO FIND A DR. THAT WILL NOT LEAVE ME WITH WHAT IFS .IT HAS BEEN 6 YEARS AND I DONT KNOW WHAT TO DO WHAT IF HE HAS A SEIZURE AND HE IS AT SCHOOL OR JUST AWAY FROM ME I CANNOT GET ANY DR TO HELP MY SON IN OK. IT HAS TO BE SEEN OR TREATED THERE IS NOWAY I CAN GO ON LIKE THIS. :confused: ;) :mad:

missy 11-29-2009 03:05 PM

We don't know of anyone in OK. Or at least there is no one on our list.

Which is closer to you, Dallas, Austin, or Houston? We do have many listings for Texas that might be available to you.

Now, I thought the criteria for SWS was a facial PWS with Seizures OR Glaucoma. If your child has a facial PWS and Glaucoma, then he shouldn't he be diagnosed with SWS?

We have an expert on that, Dr. Comi. If you haven't written to her before, take time to do so now. She is great at answering questions. http://birthmark.org/experts.php

Also, if you haven't been to our SWS Chapter site, now's the time to go:
http://swscommunity.org

Missy

zuzuspetals 12-04-2009 06:19 PM

This is regarding your mention of the learning disability, from a school-based speech-language pathologist:

If your son demonstrates learning problems in areas other than reading, but only qualified for reading according to IQ-achievement discrepancy, a medical diagnosis of SWS might actually make a case for a change in educational diagnosis so that he can get additional services if he needs them. I believe that learning difficulties are characteristic of SWS, so with a medical diagnosis of SWS, you may be able to make a case for an educational diagnosis of Other Health Impairment (this may be differently named in OK - this is what it is called in Missouri). With an Other Health Impairment diagnosis, he would be eligible for additional services.

If you find a doctor and a diagnosis of SWS is determined, this might be something to consider. Then, the medical information could also be included in the IEP, including the possibility of seizures and what school staff should do in the event of a seizure.

But then, if his only problem truly is in reading, then you can disregard this whole thing. :)

nickbar 12-05-2009 03:23 AM

please email me directly and I can help you get to a specialist that will know more about SWS and how to rule it in/out.


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