Friday, March 13, 2009

Prayers Please

I hesitate to post today, but figured we could use all the prayers we can get right now. It's about Hannah and I'm not even sure where to start. I pray all this worry is for nothing.

As many of you know, 4 months ago the neurologist diagnosed Hannah with Ataxia Cerebral Palsy even though her MRI was normal. Typically, some kind of brain injury shows up on the MRI pointing to CP.

Last week, she had a big fall at school requiring her to go to the school nurse. I've been noticing more tremors in her hands. In October when this all started, you couldn't convince me that she was tremoring. Now I see it frequently.

Tuesday we had a follow-up with the neurologist and we left confused as ever. He's now saying that he's not certain it's CP and may be neuropathy. He also said that he could not get reflexes from her legs at which point I remember that the new pediatrician told me the same thing back in November when Hannah was so sick.

So, not being comfortable (ya know...the mommy instinct thing) with the neuro appt I made an appointment with the pediatrician yesterday hoping that she would help me get a 2nd opinion with a different neurologist.

We are now worried sick! She is concerned about something called Friedriech's Ataxia. It's a recessive genetic disorder and is progressive. Initial symptoms begin when a teacher notices abnormal coordination. Another first symptom is lack of leg reflexes. It progresses to heart disease, diabetes, scoliosis, and the inability to walk. Mean life expectancy is 35, according to some of the info that I found online. At this time, some new and promising studies are being performed.

This morning I called the neuro the ped recommended and can't get an appt until May 18th. The ped is trying to get one sooner. If she can't, I'm going to beg for the blood test to rule out F.A.

In the meantime, please add Hannah to your list of prayers. Thank you!!


Jenny said...

Candy I'm praying and I'll keep praying steadily, I'm so very sorry to hear this. I wish I could give you a big hug!

Wool Winder said...

I'm praying that you can find out for sure what is causing Hannah's problems and soon. Also, that it's not something as serious as the doctor is thinking.

Anonymous said...

Hey Candy. I read about the CP dx and was shocked. I know how scary it is to have the docs tell you all kinds of possibilities when they are unsure of what's going on. We'll be praying for Hannah.


Anonymous said...

I am devastated that your little girl may have this condition. You all will be in my prayers. I pray that Hannah will not have this disorder.I'm sending many hugs from Texas.
Love, Sarita

kathy said...


Daddy Dale and Mommy Jen said...

Hi Candy!
I am a new blog reader and just wanted to let you know that we will be praying for your family and hoping that you will receive good news regarding Hannah...

Amy said...

LOve you guys. Wish we lived closer so we could visit. I will be praying for you and hannah. *hugs*

Marcia said...

Oh dear, Candy. I'll keep you and your family in mind.