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Raising Special Needs Kids Raising Special Needs Kids

Woohoo!! GJ paying off already!!

Posted by on Sep. 11, 2013 at 9:46 PM
  • 11 Replies
We had a Neuro appt this afternoon and we got to talking and realizes when Ty was on IV keppra, he was seizure free! So Neuro is leaving meds still for a week, getting serum levels next week, and if he's still seizure free in 2 weeks, we are going to start weaning off his trileptal eventually fully taking it out!!!!!! Omg!!!!! I'm so freaking excited to wean off a med!!!!! Then he just be on his keppra :) yay!!!!

We are gonna have to lower his miralax too now that his diet is just liquid and he's really getting the full doses of miralax, he has watery diarrhea. Gonna go from 2 caps to 1 cap a day!! Woo!!!! So freaking happy to wean some meds down!!!

At the same time, I asky myself "at what cost to Ty are we able to do this though?" =\


And then Ty's school sent balloons and a teddy bear to our house today!!! Love them!!!
by on Sep. 11, 2013 at 9:46 PM
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Replies (1-10):
Pukalani79
by on Sep. 11, 2013 at 9:47 PM
1 mom liked this

 I'm so glad to hear this!  And I love that his school sent those gifts.  What an awesome thing for them to do!

arkansasmama08
by Gold Member on Sep. 11, 2013 at 9:59 PM
1 mom liked this
I'm glad things are starting to work out. What a relief! Are y'all home now?
Momof4AEMW
by Silver Member on Sep. 11, 2013 at 10:37 PM
1 mom liked this

Great progress.  Glad you get to go home with less meds.  My daughter is only on 1-2t daily of miralax and can get runny if I do too much.  I can not imagine 2 cupfuls!!!  Oh my!  Glad you are getting to lessen them and that you're seeing progress!

Linagma03
by Gold Member on Sep. 11, 2013 at 10:48 PM
1 mom liked this

 I am so glad to hear that! That is great news!

Elyssa414
by Elyssa on Sep. 11, 2013 at 10:50 PM
1 mom liked this
Aww! I'm so happy to read this!
Mipsy
by Chelle on Sep. 12, 2013 at 1:06 AM

Yes, we got home Tuesday night but I was so exhausted. Once we got home we let Ty play the Wii (he had been BEGGING lol) and I laid on the couch and didn't move for an hour, lol! Then dh and I ate and did his meds and put him to bed and we passed out lol!

Quoting arkansasmama08:

I'm glad things are starting to work out. What a relief! Are y'all home now?


darbyakeep45
by Darby on Sep. 12, 2013 at 5:21 AM
1 mom liked this

Good news mama!  Brady is on Trileptal for his seizures, but it's not really working.  He's been on it for almost 4 weeks and he's had 8 seizures during that time...less than before but not what I expected.  We will see though.  Glad things are looking up!

jjamom
by Michele on Sep. 12, 2013 at 7:23 AM
1 mom liked this
I'm so glad to hear some optimistic news for you all!
Bluecalm
by Silver Member on Sep. 12, 2013 at 10:11 AM
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That's really good news! That was sweet of his school. They seem really good with him.
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Mipsy
by Chelle on Sep. 12, 2013 at 11:13 AM
Trileptal was our first med and at one point we were 9 months seizure free on it. But then due to his gastroparesis, he would basically get overdosed once the meds finally emptied and absorbed and it caused these ataxic events that were super scary. So they put him on keppra last yr but then the seizures got worse so Dr decided to try trileptAL again and we were upping trileptal and hoping to wean out keppra cuz of rage. But in the hospital on IV keppra he was seizure free so we know now keppra can and will work, it just wasn't absorbing.

And that was me rambling haha


Quoting darbyakeep45:

Good news mama!  Brady is on Trileptal for his seizures, but it's not really working.  He's been on it for almost 4 weeks and he's had 8 seizures during that time...less than before but not what I expected.  We will see though.  Glad things are looking up!

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