Friday, January 22, 2010

Odd Movements

Kendall's hanging in there. She hasn't been running a fever, but hasn't exactly been herself either. The hives never returned this week, but neither did her sleep.

She had a nasty round of seizures on Wednesday morning that pretty much wiped her out for the remainder of the day.

Yesterday we went to the Ophthalmologist. I was so looking forward to this appointment because I wanted them all to see her new skill of tracking. She did it right off the bat. They didn't seem to be as excited as I was, but I guess that doesn't matter. The good news is everything checked out OK. I stood my ground on declining the annual examination under anesthesia. My main concern was her pressures in both eyes being high and the risk of glaucoma. He said we could postpone our exam until the summer. I feel confident in that decision. While the exams are not a big deal, Kendall under general anesthesia to me is. She is so complicated that anesthesia is always a big risk. So we have decided to wait. He changed her prescription significantly. She is now a +20 in both eyes. These lenses are going to be huge.

Our Dr. said her eyes are going to grow in proportion to her face. At first it was declared that she had microphthalmalia...but now he thinks they have grown. Her eyes are still very small and too small for in ocular lens implants right now. Maybe someday. So we will wear her glasses with pride. She can see.

I asked about the risks associated with Type 1 Diabetes and her vision. I know there are quite a few. He reiterated that close control and keeping fluctuating blood sugars at bay will be key in avoiding any other vision issues. Another good reason to get on the insulin pump. Then he told me something that made me almost fall over. I read a lot, but admit, with the Diabetes, I just kinda have survival mode. At first it was the one thing she had that I thought would be cut and dry. She needed insulin, we'd make sure she had it....and I left it at that. But he told me there is a high probability in her lifetime that they would cure Type 1 Diabetes. Fascinating.

So, as I mentioned, she is not sleeping. She also has new movements, which I think could be seizures. (story of my life) She grits her teeth, pulls her fists up by her face, and shakes her head from side to side. The verdict is still out around here with that though. She conveniently does it when she wants something, or is in a position she wants out of. Its almost like a frustration thing...but still. Most people laugh when they see it because she looks so agitated. But it makes my heart sink every time. While she's trying to go to sleep, she's been twitching and jerking a lot too.

I'd call our Neuro about this, but honestly, I feel like they don't care anymore about seizures. We have had some relief on the Ketogenic Diet, but still have seizures at least once every 2 weeks. So, if they are changing from Infantile Spasms, you'd think they would want to do another EEG, but he never does when I ask. I don't want any medication added. We have enough organ failure to worry about with her current issues! So I pray this is just a pain thing or something that will phase out very soon.


Reagan Leigh said...

I totally relate to your frustration with the doctors not really caring. And the would think they are having to pay for these things themselves! The movements you are describing sound very much like what we've been seeing with Reagan. The head turning back and forth and the arms tensed up. Maybe it's chorea. To me it also looked strangely similar to a seizure but after seeing multiple doctors they have all assured me it's not seizures however it is chorea. Either way, I don't like it. Right now we're still not treating it because we too are sick of pumping her full of medications. But we'll see. I just want to do what's best for her and often it's hard to know what that is!

Debbie said...

Sorry about the seizures still present...But at least, in spite of seizures you are seeing areas of progress and development...she is one tough cookie!

Bronx Cataldo's said...

Finnian has one small eye the other is normal. Wow her script is getting near to Finnians. Like Kendall Finnian cannot get the lenses implanted but what are their thoughts on contacts? Finnians last pair were pricy but well worth it.
Seizures are crappy. We have batteling some thing we had a weird nero appointment today they still cannot say seizures Ahhh I am ready to pull my hair out

Candace said...

Poor baby....

I am totally there with you on the seizures. We finally had enough and just came back from MUSC's epilepsy center. You all are in our prayers.

gilda said...

You have many applaudes on this side with Kendall's new skill tracking:)but not so happy about those nasty seizures;( Good call on doing what you feel is best for your little girl always listen to your "mom heart". As for the one day cure for Type I Diabetes "Awesome" for Kendall and all who live with this everyday.