Hello everyone, introducing myself and my son with CP

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ferz100's picture
Joined: 07/19/10
Posts: 32
Hello everyone, introducing myself and my son with CP

Hello there!

My son Zack is 10 months old - he suffered abrupt and severe lack of oxygen during birth from the cord around his neck with apgars of 1/1/1. As a result he suffered a brain injury to the basal ganglia and thalamus. He now has mixed tone CP with dystona. He is an amazing miracle as he did not take his first breath until 30 minutes of life and had no heart rate for 24 minutes. His strength still shows every day as he works hard at learning to move his body and his arms....We are in lot of therapy for him and he is responding well, but he is very delayed in his motor skills. He is a wonderful delightful baby and is always alert, checking out the scenery, smiling, giggling and snuggling!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Welcome to the board!!! So glad you found us. Your little boy is too cute.

I'm Angela, mom to four kiddos, two with special needs. My son Dakota is high functioning autistic. And my son Eli was born with Shone's Syndrome and has subclavian steal syndrome and some other issues.

This is a great group of ladies who have been there through some rough times.

Joined: 12/01/05
Posts: 1000

He's such a cutie! Welcome!

I'm Deb. I have 5 kids. My son Isaiah has dopa-responsive dystonia and just had surgery to get a Deep Brain Stimulator.

ferz100's picture
Joined: 07/19/10
Posts: 32

Thank you for the warm welcome Angela and Deb!!!! This group looks great!

Deb that is so interesting about the deep brain stimulator....have you found that it has helped? And how did you end up with the dopa responsive dystonia diagnosis rather than a CP diagnosis! I have heard it is often mistaken for CP....in our case I think our birth history really caused Zack's brain injury but I have heard several cases of dopa responsive dystonia were misdiagnosed for years! How does he respond to the l-dopa?

Thanks Smile :)

Joined: 12/01/05
Posts: 1000

Good question. They knew he didn't have CP because it progressed rapidly (started out with a funny gait, then within a few months couldn't walk). They tried l-dopa first, but he had a major negative reaction to it, so they tried other drugs. Then, when we adopted him and moved him to Pittsburgh, we began taking him to a local neurologist who specializes in movement disorder. He reviewed the entire file and decided that Isaiah most likely had dopa-responsive dystonia and that he was originally given too large of a dose of Sinemet. He started him out very slowly, on a 1/4 tablet a day and gradually increased until we saw some very good results. If it hadn't been for him, we never would have known.

Joined: 05/05/04
Posts: 435

Welcome to the group! It's a good group of women. We all have different stories (as do our kiddos) but we offer a lot of support!

Tom was born with a cleft lip and had surgery at 4 months old to repair it.