Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Thursday, March 25, 2010

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Dystonia is Colby's official diagnosis. You can't be diagnosed with Cerebral Palsy if the brain injury occurs after the age of one. Most people assume he has Cerebral Palsy. It's similar but not. Does that make any sense at all? Welcome to my world. I guess I should say Welcome to Colby's world.

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. It can be hereditary. But it can also be caused by physical trauma, infection, poisoning like lead or reaction to drugs.

There are a couple of different types of dystonia. There is Generalized,
Focal, Segmental, Intermediate and Acute Dystonic Reaction

Generalized dystonia is hereditary. It starts in childhood and works it way feet upward. Focal dystonia means there are pinpointed locations that are affected. It's usually limited to one area of the body.

Segmental dystonias affect two adjoining parts of the body. Hemidystonia affects an arm and a leg on one side of the body.
Multifocal dystonia affects many different parts of the body.
Generalized dystonia affects most of the body, frequently involving the legs and back.

Because Dystonia can get technical pretty quick here is what Wikipedia says about it.

Symptoms vary according to the kind of dystonia involved. In most cases, dystonia tends to lead to abnormal posturing, particularly on movement. Many sufferers have continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements. Other motor symptoms are possible including lip smacking

Direct symptoms may be accompanied by secondary effects of the continuous muscle and brain activity, including disturbed sleep patterns, exhaustion, mood swings, mental stress, difficulty concentrating, blurred vision, digestive problems and short temper. People with dystonia may also become depressed and find great difficulty adapting their activities and livelihood to a progressing disability. Side effects from treatment and medications can also present challenges in normal activities.

In some cases, symptoms may progress and then plateau for years, or stop progressing entirely. The progression may be delayed by treatment or adaptive lifestyle changes, while forced continued use may make symptoms progress more rapidly. In others, the symptoms may progress to total disability, making some of the more risky forms of treatment worth considering.

An accurate diagnosis may be difficult because of the way the disorder manifests itself. Sufferers may be diagnosed as having similar and perhaps related disorders including Parkinson's disease, essential tremor, carpal tunnel syndrome, TMD, Tourette's syndrome, or other neuromuscular movement disorders.

The direct symptoms paragraph describes Colby to a T! I had John read it and he laughed and said that was exactly Colby. Colby goes through weeks of sleeping well and being happy and then for no reason there is some switch that is flipped and he is cranky and doesn't sleep for longer than 50 minutes at a time. His spasms (that's what we call them) get stronger and more frequent. He throws up a lot and is just generally miserable. Then for what ever reason it goes back again.

Friday we will go see the neurologist again and try to decide if we are going to go forward with the Deep Brain Stimulation. The more I read on it, the more I want it for him and the more I don't want it for him. Wish us luck in finding the answers to our questions.

More on dystonia next week. I told you its complex and it's best to break it down in sections.

If you'd like to link up a post on a medical condition please feel free to do so. It can be about any medical condition. Feel free to rant and rave or jump for joy over what ever condition you are dealing with.

Here is a link to the newest donation button for Colby's fundraising account. This ebook is for fondue recipes.
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