Lorarama
10-03-2006, 11:42 PM
Hi all...just thought I'd send an update out there since we don't have an official roll call right now. Jac's history is complicated...she was diagnosed almost 4 yrs ago with an accute encephalomyelitis (ADEM), but never really followed the rules of that diagnosis. As she had uncontrolled seizures for years and some cognitive decline and we found her brain damage was progressing, we went for further opinions and last summer we went to Montreal and got the Atypical Rasmussen's Enceph. diagnosis from the guy who is supposed to know! Typically they do hemispherectomies for RE, but since Jac doesn't follow the rules...they decided to try IVIg treatments. She's been getting IVIg for just about a year now and had a follow up MRI in July to see if the damage was progressing and IT WASN'T! The damage is stable, which is good news, it will never get better, we can only hope to save what she has left. She has been plagued with these nasty myoclonic seizures for years that have been immune to meds. They are so bad, they knock her down, almost like atonic, but different. Let's all say it...WE HATE SEIZURES :mad:
So, fast forward to this summer...in July, she had a big myoclonic and fell and broke her toe. It was her big toe, so of course they couldn't just do buddy-taping...they had to do surgery and pin it! (are you seeing a pattern with a kid who always takes the hard road) (or at least, who always GETS the hard road, it's not always a choice, is it?) During a 2 wk period in July, she had neuro-psyche testing on Monday, toe surgery tuesday, 2nd neuropsyche on Wed, then a break...then the following monday, her IVIg treatment, Tuesday MRI, wed post-op visit, thursday feedback for neuropsyche!! By the way, recovering from toe surgery while you body is constantly jerking really hurts!! :( However, since I keep complaining about the szs., her doctor has started her on a new drug that is not approved in the US. So unfortunately that means i have to pay out of pocket. She has been on Clobazam or Frisium for about 3 wks. now, she is 3/4 of the way to her full dose. I am hesistant to get excited, but I can truely see a difference in the amount of szs. and the intensity of them (she says as she bangs on any piece of wood nearby). I hope this will be the one that does it...
Anyways....now the toe is healed and the MRI looked good. The neuropsyche testing was pretty much the same as last time, again, good news. School is back in session, she isn't falling down 2 or more times a day and Braintalk is back up ... wow, seems like things are getting back to normal, dare I say.
Thanks for letting me babble...
Take care
So, fast forward to this summer...in July, she had a big myoclonic and fell and broke her toe. It was her big toe, so of course they couldn't just do buddy-taping...they had to do surgery and pin it! (are you seeing a pattern with a kid who always takes the hard road) (or at least, who always GETS the hard road, it's not always a choice, is it?) During a 2 wk period in July, she had neuro-psyche testing on Monday, toe surgery tuesday, 2nd neuropsyche on Wed, then a break...then the following monday, her IVIg treatment, Tuesday MRI, wed post-op visit, thursday feedback for neuropsyche!! By the way, recovering from toe surgery while you body is constantly jerking really hurts!! :( However, since I keep complaining about the szs., her doctor has started her on a new drug that is not approved in the US. So unfortunately that means i have to pay out of pocket. She has been on Clobazam or Frisium for about 3 wks. now, she is 3/4 of the way to her full dose. I am hesistant to get excited, but I can truely see a difference in the amount of szs. and the intensity of them (she says as she bangs on any piece of wood nearby). I hope this will be the one that does it...
Anyways....now the toe is healed and the MRI looked good. The neuropsyche testing was pretty much the same as last time, again, good news. School is back in session, she isn't falling down 2 or more times a day and Braintalk is back up ... wow, seems like things are getting back to normal, dare I say.
Thanks for letting me babble...
Take care