This past year we have been really hopeful to start decreasing one of Abby's seizure medications (she's on 3), now that she has the VNS. We started slowly weaning her off of the Lamictal this past Spring. Then she started school in August and couldn't stay healthy.
During one of her long seizures our doctor told us to bump her dose back up.
Now that she is no longer in school and somewhat isolated from childhood germs we are trying to decrease her Lamictal again. The main concern of her neurologist is that this move could increase her risk of more prolonged seizures. From what we have experienced, Abby has terribly long seizures when she is feverish no matter what medication she is taking.
In light of this, we are anxious to clear her system at least a tiny bit from all the heavy medication she is on. The VNS is definitely working better then we had hoped. She no longer has myoclonic seizures and is having fewer tonic clonic (grand mal) seizures now that she is staying healthy.
Please pray with us during this change in medication. The past few days Abby has been starting to show signs that her body isn't liking the decrease. Last night she was up till past 11 pm tossing and acting agitated in her bed. We think she is having additional seizures that are harder to observe, as she occasionally calls out with an eery tone and looks a little scared.
We've decided to slow down the schedule of weaning this drug. Hopefully this will give her system more time to adjust.
Josiah is getting really good at following directions from his mom who is often out of commission on the couch. He has learned to help Abby sit up in her new "Bumbo" type chair. He gives her pats when she is upset, or if she is working hard at a task. I'm really proud of him.
He has also started to enjoy "laying on the couch" with mommy. I asked him last night if he would sing me a song while we snuggled. He thought for a minute and sang me "rock-a-bye baby," almost word for word. I didn't even know he knew that song. Then he jumped up and belted out "Rescue Me" from one of our Selah albums. (can you tell we love this group?) He knows almost all those words too. It was pretty cute. That moment created my biggest smile for the day.
Job side Family picture at the Younger's
1 comment:
Oh, my Abbers- that sounds awful. You all are such troopers, "just keep swimming"! Such sweet stories about Josiah :) Paba, you are my hero, so sorry you are feeling so sick :(
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