Made of Gray


Holly D Gray15 Comments
After making a trip to the Spasticity Clinic at our Neurologists' office, Caleigh has a new diagnosis.

Generalized Dystonia

Before you go Google it (bad idea, by the way), let me back up a bit. We've been to the same clinic about a year ago where Caleigh was diagnosed as Hypotonic. Meaning - weakness, floppy or no tone. As kids with cerebral palsy get older it becomes easier to see what kind of tone their muscles will have. How Caleigh's muscles are today will not be the same this time next year. So she could, in actuality, bring home a new label when seen again.
When we arrived at our appointment I had plans to talk about Botox, Orthotics and basically see if we are missing anything. I did not expect to hear another label and learn to deal with another hurdle. It caught me by surprise. Shocked. I went in confident. Confident that I know my child and this was merely an old hat type of appointment.

The appointment consisted of our wonderful PT, the office OT, PT, Ortho Specialist, Nurse Practitioner and Social Worker. Plus the Neurologist. They all came in and did their assessment. The Neuro asked us what Caleigh's strengths and weaknesses are. We started to tell him when he took Caleigh's sock off. I mentioned her big toe and how it's been like that since the NICU. How I thought she needed Botox for it, maybe? He went to pull off the other sock asking if it was the same. Yep. He got an excited look on his face and asked the team if they knew what Caleigh's pointed toe was called. Apparently they don't see to many of them. No one in the room knew.
It's called a Striatal Toe and it's caused by Caleigh's brain injury. More specifically it is caused by injury to the Basal Ganglia, deep within Caleigh's brain.

So we talked more as he moved Caleigh's legs around. He asked if she becomes a rag doll when asleep, and we all said yes. He sat back down and began to make notes. The rest of the team came over to the table and started playing with Caleigh. She wouldn't do anything for them. So I turned on her music and she started cooperating.

The doctor began talking about normal treatments.'s still to early, wouldn't work. He then asked us again how long Caleigh's toes have been that way. We said since we could remember. People are always commenting on her "cute toes" "Oh, look how they point." He asked us again about her tone while sleeping. We answered.

That's when he said it. Dystonia. She's not spastic. She's not hypotonic. "You can drop cerebral palsy" he said. WHAT! Are you kidding me? Then he backed up and said "we better keep the term cerebral palsy in case we want to do Botox injections in the future." Basically for coding purposes.

Cerebral Palsy I was ok with. I've had time to get used to the term. From the moment Caleigh was diagnosed with PVL, we heard the term come out of the doctor's mouth. Even before there were definite signs of CP, we knew it was there.

He explained that Caleigh's muscles relax and contract over and over. A big sign of Dystonia is the rag doll relaxation when sleeping. Another blatant sign of Dystonia is the Striatal Toes since birth. Dystonia is directly related to an injury to the basal ganglia of the brain.

So to explain Dystonia in simple terms it's having your muscles constantly twist, jerk and retract while you are awake and working towards something. I'm sure you've seen the "twisted" people in wheelchairs. It's about like that. You reach for the apple right in front of you and your hand twists to the left, then the right, then up, then down, then around and then eventually you make it to the apple. If your lucky. Everything you look up on the web talks about Parkinson's Disease. Unlike Parkinson's, Caleigh's form is not degenerative. It is what it is and will only change as Caleigh changes.

There are two different kinds of Dystonia. One being primary which is a genetic condition and the other is secondary which is from an injury. Caleigh's is secondary to her PVL.

As far as cerebral palsy goes there is such a thing as athetoid CP. This has more to do with constantly moving involuntarily. They call it more of a "walking movement." Something Caleigh doesn't do. It's when she is working for something that the tone, jerking and twisting start.

This also explains a lot of Caleigh's movements that we have always questioned. Things we thought looked suspicious for being seizures turned out to be a dystonic movement. Her "shudders" or "cold chills" are just her dystonia. Things that we thought were Caleigh quirks are really just apart of her condition.

At the appointment, the doctor offered us a prescription for Artane. Explaining that this med works on the part of the brain that feeds those jerky movements. The med will help smooth things out. He said either it works or it doesn't. Some children experience "out of body, psychotic tendencies" and if that happens we will have to stop the med. Pretty scary, but I think we are going to try it. We go to the GI doctor tomorrow so I plan on discussing it with him and then going to our pharmacist and talking it over. Everything you look up on Artane is based on it's affect on Parkinson's. It's a Parkinson's drug.

So what does this mean for Caleigh?
Well, not much. She's still the same Caleigh she was before this appointment. This won't change our coarse of action as far as therapies go. We will keep the term Cerebral Palsy because it does explain her brain injury to most, and like the doctor said, it will help with insurance matters. If the medicine works she should be able to achieve more movement. There are no guaranties with this. Other than my shock things will stay the same.

If you have any questions or maybe I wasn't clear on something please leave me a comment and I will try to answer as best I can.


Update: To clarify Cerebral Palsy is a blanket term used for someone with a movement disorder. There are different types of CP based on the muscle tone involved. Dystonia is considered it's own movement disorder and does not fall under the specific types of CP. All doctors and specialists have varying opinions on this matter. Our Neuro even said it was a "philosophical question" I was asking when referring to the difference between CP & Dystonia. When I searched for the difference online the two never came up together.

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