Wednesday, September 10, 2014
Joanne
post from facebook:
Claire's new therapist Joanne is an angel yall. I am SERIOUS! She comes over with more research than anyone (besides me or my mom) has ever done on Claire and all of the big crazy words in her diagnoses. She gives me SPECIFIC examples of things to do with Claire to encourage her talking. I cannot say ENOUGH good things about her. She is helping us figure out every program we can apply for to get help for Claire, medical bills etc. She is AMAZING. Thank you for everyone who prayed for Joanne. . . God is good.
Wednesday, August 27, 2014
Saturday, July 12, 2014
Friday, January 17, 2014
Jan 17 2014 after DR
Update after seeing Dr Wilfong- on my phone so sorry for spelling or grammar mistakes.
Her seizures have changed to grand mal seizures which are much more common and much easier to treat. Before she was having "clusters."
He think it's very unlikely that she was having drop seizures as he would have seen activity on her EEG that was a couple of days ago.
Her EEG showed MAJOR IMPROVEMENT!! He said they are looking at the activity happening between seizures and Claire's was nearly gone!! Aaaannnndddddd before she was having activity all over the brain, now it was only in front right love of brain. Which is awesome news. Also because it's in one part of her brain- if something happens and she starts having seizures that we can't control w medicine then she could be a candidate for surgery. Before that would never have been an option since she has activity all over the brain.
Our next step, is if she continues to do well, having not many seizures, then in a month we will start to play with her meds. BC she is on three meds. So the last one we added was onfi. So there are two possibilities- 1, that the onfi has made her seizures stop by itself, OR 2, it's the combo of all three that is working. So we will decrease zonegran and go from there....
And her development is great and she is talking and doing awesome!
Praise GOD!!!
Her seizures have changed to grand mal seizures which are much more common and much easier to treat. Before she was having "clusters."
He think it's very unlikely that she was having drop seizures as he would have seen activity on her EEG that was a couple of days ago.
Her EEG showed MAJOR IMPROVEMENT!! He said they are looking at the activity happening between seizures and Claire's was nearly gone!! Aaaannnndddddd before she was having activity all over the brain, now it was only in front right love of brain. Which is awesome news. Also because it's in one part of her brain- if something happens and she starts having seizures that we can't control w medicine then she could be a candidate for surgery. Before that would never have been an option since she has activity all over the brain.
Our next step, is if she continues to do well, having not many seizures, then in a month we will start to play with her meds. BC she is on three meds. So the last one we added was onfi. So there are two possibilities- 1, that the onfi has made her seizures stop by itself, OR 2, it's the combo of all three that is working. So we will decrease zonegran and go from there....
And her development is great and she is talking and doing awesome!
Praise GOD!!!
Jan 17, 2014
We go to see Dr. Wilfong today. . . .
Also Claire has been seizure free since Jan 4th! (that is IF she was not having drop seizures and was just being clumsy) She had the drop seizures on the 6th and 7th of Jan.
The Whole Exome Sequencing Genetic testing is supposedly FINALLY STARTED! We had our blood drawn in June I think of 2013. . . So it has taken this long for everyone to get there SH!T together and communicate. I have spent hours and hours and days on the phone with different people and for it finally be over is such a relief. Hallelujah!!! Minimum - it could take 3 months to get results. . . but it could also take up to a year . . . .
Also Claire has been seizure free since Jan 4th! (that is IF she was not having drop seizures and was just being clumsy) She had the drop seizures on the 6th and 7th of Jan.
The Whole Exome Sequencing Genetic testing is supposedly FINALLY STARTED! We had our blood drawn in June I think of 2013. . . So it has taken this long for everyone to get there SH!T together and communicate. I have spent hours and hours and days on the phone with different people and for it finally be over is such a relief. Hallelujah!!! Minimum - it could take 3 months to get results. . . but it could also take up to a year . . . .
Wednesday, January 8, 2014
Jan. 2014
Claire is now on 4.5 ml Keppra, 50 mg zonegran and 2ml onfi (each twice a day)
She's having a seizure every three days or once a week.
She is now also having big seizures a long w her tic like ones. She has had 4 big ones so far. All last under 5 min. These big seizures- she shakes, sometimes seems to not breathe, lips turn a tint of blue and she passes out sleeping right after.
She's having a seizure every three days or once a week.
She is now also having big seizures a long w her tic like ones. She has had 4 big ones so far. All last under 5 min. These big seizures- she shakes, sometimes seems to not breathe, lips turn a tint of blue and she passes out sleeping right after.
Also, Waiting to hear back from dr Wilfong but the nurse said what I was describing (I thought it was maybe a side effect of meds? Or she was just clumsy) was what some patients have, called drop seizures. *sigh* Claire literally is walking in a straight line, super slow (no reason she should fall) and then just falls flat on stomach and face. Busting her nose. It's bizarre which is why I mentioned it but never thought it could be a type of seizure.
We see him again January 27
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