Sunday, January 8, 2012

a neurology update...

We went and saw Lila's neurologist Dr. Filloux this week. We have been very blessed to have such a nice and accommodating doctor on our side. He has been so wonderful, we feel really lucky.
No new news from the researchers in the U.K about when they are going to publish. I want to email them but last time I got on their nerves they told me just to ask my questions to the doctors here. Its hard for me to learn patience.....
Lila has been doing motions like she is startled, and while at first I thought they were just moments of being scared they have started to turn into rhythmic and continuous motions. Dr. Filloux believes that these are seizures. So while I was thinking Lila only has seizures every couple weeks we now realize that she is having several clusters everyday. Obviously we are pretty sad by this new news, but we have started to take bad news in stride and just try and figure out what we can do to make Lila's life better. Lilas Doc gave us a prescription for some seizure meds. I haven't filled it yet. I am still on the fence of what I want to do. I hate giving her any more meds then necessary but I am also wondering if this may help her sleep and then she will be better alert during the day. I wish decisions about Lila were more Black and White but everything seems to be in this gray area.
Other than that we are thrilled to not be in the hospital yet (knock on wood!!!) Lila has been doing pretty well this winter season. Just a cold and a horrible spider bite! Poor thing. We know that there is a hyper little toddler in there just dying to get out. If you grab her legs and make her "run" she laughs and gets excited every time. She also loves to twirl and dance, especially with her daddy.

4 comments:

nikki said...

Seizures are tough. Eliza got to the point where she was having so many that we knew she needed some medication. She once had 40 in one day!

I was worried about adding more and more medication into her system but to be honest, I didn't notice any change. She wasn't unusually drowsy or lethargic because of it and it has made a big difference. She still has little breakthrough seizures but nothing like she would without it.

So...that has been our experience for what it is worth :)

Give Miss Lila a squeeze from us. Caroline was talking about her again the other day. She always says, "Lila is so cute!" We all agree

D said...

Hey Kristi, It's Doni. We have a neighbor who has a kid with a genetic disorder that hasn't been identified. He has a lot of seizures and she has run the gamut for different kinds of treatment. I could put you in touch with her if you want if you'll give me your e-mail address. I'm sure she would be a good source of information.

Barb said...

I'm laughing at the image of Lila laughing at her running legs. So darling. I'm sorry about the seizures, poor baby.

Terri Goldstein said...

Hi Kristi,
So many people are trapped living their lives in black and white. And just when it would be nice to have a definitive answer- we get gray. I would like to think that's because it's Heavenly Father's way of telling us, I'll take care of this one; you just live each moment- one moment at a time. I know that is very difficult. However when you achieve that, you will have peace. I understand your worries about adding another medication. I recall going through that when Julia was younger. I remember the doctor asking me, "if it can help and make life for Julia a little better, why not give it a try?" Easier said than done, I know. In which case, I do my best to remember that I do better when I make decisions and live by faith rather than fear.

I know that you and Quinn will know what to do regarding the new medication. The doctors may be the experts on the condition but you two are the experts on Lila.