Saturday, October 4, 2008

Update, Dr. Neuro

We talked with Dr. Neuro about Kaylee's seizures, he gave us a few
different treatment options.

1. Increase her Topamax to the max dose slowly and see if it curbs the seizures and spasms.

2. See the dietician to begin the Ketogenic Diet.

3. Vigabatrin

Dr. Neuro said he doesn't need to do a repeat vEEG to confirm. He said if it looks like spasms, it's spasms. He said he didn't want to waste time testing, he wanted to move straight to treatment. Given that her other seizures had kicked up in frequency as well, he felt that we
needed to move quickly. He said he was confident that I knew what to look for.  Also, it doesn't really change the course of treatment, since we are not going to use ACTH again.  She didn't do well on ACTH and it didn't work well on her either.

It wasn't the answer I was hoping for at all. I wanted him to stand up and say, no, you are probably wrong, there is nothing to worry about. Our Dr. Neuro puts a lot of stock in a mother's intuition. He thinks that more doctor's need to listen to that instinct.

We have not made any firm decisions on treatment yet, but we are leaning toward diet and Topamax. For the time being, the increased dose of Topamax has kept the seizures at bay. She has been very wakeful at night, so we are not yet certain if that is from seizures or from increased meds. The doctor said we need more time to see which one it is.

It's very disappointing.  We really thought we had the IS beat.  We were pretty knew we may never be free of the Complex Partial's, since she had occasional seizures with TSC.  I guess we just feel blessed that we were free of the IS since the end of April 08.  One year ago almost to the day is when the IS began and we have come a long way since that bumpy road.  October is our favorite month, but these last couple haven't been so great.  We are hoping we won't be celebrating another one of Mark's birthdays at Children's Hospital.  As nice is the hospital is, it's not a good place to party :)  Kaylee has plans to dress as the "littlest angel" for Halloween, so we are hoping to be able to do the typical dressing up and trick or treating this year.  It will be her first, since she was on ACTH and in misery last year.  She had swelled up so much, we couldn't zip up her costume.

Calling on all prayers to see us through this rough time.  Hoping for a speedy cessation of the spasms and are next course of treatment will work with minimal side effects.

6 comments:

JSmith5780 said...

Poor Trevy and Kay... why can't they catch a break. I hope you can start a treatment soon and get these spasms gone!

Shanna Grimes said...

Thanks, we are hoping that the increased dose of Topamax will keep the seizures at bay.

baby trevor's mommy said...

you know you have my heart...which includes my prayers!

...danielle

~Mama Skates~ said...

prayers coming ur way!!! and big props to the doc that listens to mama's instincts - he's right - we DO need more of those!!!

Monica, James, Connor McGuire said...

I love Drs that listen to Mommys!! They need to be cloned! As far as the diet, Connor has been on it since 2/25 so if you have any questions please feel free to pick my brain. We didn't think it was helping for awhile, strated coming off of it, and truly realized that it did work. Hoping that whatever treatment you choose helps your precious little angel

Shanna Grimes said...

Thanks everyone.

Monica, I will def be contacting you.