Monday, March 30, 2009

Neurology Appt...and our next steps!


Well...we just returned from our appointment! Dr. Malik did a great job going through everything with us. He even took us in the other room and went over the MRI. After further review, Kendall is not a surgical candidate. I guess I feel a little disappointed with this, since he made me think at first she was. The seizures are coming from both sides of her brain. Also with the added risk of Factor V, the risks outweigh the benefits for her.
On a positive note (at least in my mind) her MRI shows two Porencephalic cysts...a bleed on both sides, but structurally everything else is in tact. Now, I feel safe saying her main diagnosis is Cerebral Palsy. She will develop... just delayed. He said she will probably have a left sided weakness, but could not predict her future. No "life expectancy" was given! In a weird way, that makes me feel better. We just need to be patient with Kendall. And these darn seizures need to stop!
So, the plan to stop the seizures: Since we are still not at the max dose of Keppra, we will be increasing that, since the Topamax hasn't ever worked, we are decreasing it. After 10 days on max dose if we don't see any improvement, we will start Vigabatrin. (they are calling a pharmacy in Calvary?? if we can't get it there, Mexico.) Then, if that doesn't work, ACTH. Justin seems relieved we have a plan. I'm relieved there's still 2 more options before ACTH. Kendall's still her happy, giggly, sweet self...with annoying seizures!
I'm off to Kam's Open House...and tomorrow we have therapy early and blood work to check the medication levels after that! Justin will be out of town all week on business and I have a ridiculously busy week with work too! Keep us in your prayers!
~This is a picture of Kendall enjoying the beautiful day yesterday after church in her Child Rite chair!

10 comments:

TwinsRock08 said...

I love the picture. She is so sweet. She reminds me so much of Kamden.

Cjengo said...

Very cute pic!!!!

Jill Calvert said...

Very cute! So glad you got the chair....It looks like she sits really well in it!!!!

Bronx Cataldo's said...

Finnian is on Vigabatrine we get it from British Colombia, Canada if you need the info let me know.
Ger,Finnian and the Cats in the Bronx

jamie said...

awwww....she is so cute!

Jessica said...

LOVE the pic.....she is so stinkin' GOREGOUS!!!!

Cindy said...

Cute photos!! Kendall looks so happy - she is just waiting for the pool to open!!
Cindy

Bronx Cataldo's said...

I was going to send the info to Jen but she has her hands full with Jude in the hospital right now. Just email me and I will give you the info

Bronx Cataldo's said...

Sorry I forgot to give you my email
eoghancat@aol.com
Ger,Finnian and the Cats in the Bronx

Ellen said...

ADORABLE. What a smile!!! I am glad the appointment went OK.

Cerebral palsy is a horrible-sounding term, but as I've learned over the years, our kids are most definitely NOT their diagnoses.