Thursday, March 19, 2015

Update on Eloise - No More Casts and What the Future Holds

It's been 4 weeks since Eloise got her first cast put on. And that means that she just finished up her fourth cast! I took it off on Tuesday night and this morning we went to the doctor to see how her range of motion has changed over the course of the 4 casts. Success!

Taking her cast off. Her favorite part of the week!
She now has full range of motion in her right foot and doesn't need any more casts! She ended up only needing 4 out of the 6-8 casts because she responded so well! Her last cast was the worst and she was just ready to be done with them, so we are grateful!

Two weeks ago I took her in for her neurology appointment. At that point we had two suspected disorders on the table: Cerebral Palsy or Dystonia. The doctor was able to rule out Cerebral Palsy from a physical examination of her. There is still the possibility that Dystonia is what is causing her foot to pop up and turn in, but the doctor doesn't feel like an MRI is necessary at this point unless we see more/worse symptoms. He said that the risks of the MRI to her tiny body out way the benefits of knowing what is causing her symptoms right now. He also said that even if we knew, we would continue her current form of treatment anyways. Maybe down the road we will do an MRI to see what or if there is any damage to her brain that could be causing a muscle disorder, but for now we will just treat what we see.

My cute Ellie Bean at her neurology appointment!
In some ways I was hoping for a diagnosis of Cerebral Palsy. Cerebral Palsy is usually caused by brain damage while in the womb, during birth, or shortly after birth. So whatever damage was done is done. It won't get worse. It won't get better, but her case is so mild anyways (just mildly affecting her right foot) that it is totally something livable, especially with physical therapy, botox, etc.

However, Dystonia scares me more. Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures (i.e. her foot turning in and popping up when she walks). There could be many causes of Dystonia including genetics or a brain injury.

There are two main types of Dystonia - Generalized Dystonia and Focal Dystonia. Focal Dystonia affects just one part of your body. And if that is the type that Eloise has that doesn't scare me. It is not curable, but we can treat her foot with therapy and a brace and it won't affect her daily life much. But Generalized Dystonia affects your whole body. And the scary part?

"If Dystonia symptoms occur in childhood, they generally appear first in the foot or hand. But then they quickly progress to the rest of the body." -Source-

I think that's what scares me most about Dystonia. Generalized Dystonia can be a completely debilitating disease. If it spreads, Eloise could be completely handicapped. 

I have done lots of crying since we first heard that Dystonia was on the table almost a year ago. I take comfort in the fact that: 1. So far, we have not noticed anything abnormal in any other part of her body. The fact that she is almost 3 and we still only see symptoms in that foot is a GOOD sign! Also, the foot that does turn in, turns in so mildly that many people do not even notice it until they spend more time with her or focus on it specifically.  2. She is developing normally in every area including speech and is super smart! She also has learned how to cope with her foot and can run and jump and do the splits and head stands and.... you name it, she can do it! It does NOT slow her down! 3. Most importantly GOD is in control. This didn't come as a surprise to Him. He placed sweet Eloise in our care, He handpicked the baby for us and we will stand by her side through casts and doctors appointments and botox and physical therapy and MRI's and braces.... you name it, we'll be there! We know He will equip us for what is to come. 

This girl doesn't let a silly cast slow her down!
As of this morning we have moved on to weekly physical therapy visits and a brace, which she will be fitted for in the next week or two. She will most likely have to wear the brace on and off and do daily stretches at home for the rest of her life to help her foot keep the range of motion it has gained. In just one visit the physical therapist said that Eloise exceeded every goal she had for her and that she has to make new, more advanced goals for her already! We are so proud of her!

Doing twists "like a ballerina" at physical therapy this morning. 
Isaiah and Olive joined in too but I didn't get a picture of Livy. 
They had a blast and Eloise agreed that physical therapy was MUCH more fun than getting a cast put on. =) 

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...