Parental Advice

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

Moderators: Tmagic650, Lori-ann

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Parental Advice

Postby admin » Thu May 11, 2006 10:03 pm

Having grown up now and thinking back on what my parents had to go through while I was a child has given me more respect for them. I was born weighing 2 lbs. and the premature birth caused my Cerebral Palsy. My family handled it quite well. Today I am a 26, living on my own and getting ready to get married. Have my parents not delt with the situation as well as they did when I was growing up, I do not belive I would have turned out so well. I went through many surgries and because of those I am able to walk with no assistance...I have to use crutches to walk long distances. I owe a to my parents for helping me get to where I am today.

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Postby Lori-ann » Fri May 12, 2006 7:24 pm

WOW! Congratulations on the upcoming wedding!!

A bit about me and my son. I am Lori-ann and my son is Kurtis. Kurtis is 4 1/2 years old and has Spastic Quad or Di CP depending on who you are talking to. All four limbs are affected but he does have good use of his arms and hands. He does have a good pincher grip but has trouble with other finger isolations. Put a pencil in his hand and you can really see the effects of the CP.

Kurtis also is hearing impaired. He has a condition called Auditory Neuropathy (AN for short). Volume is not the issue....clairity is the issue. Kurtis cannot decipher speech sounds. Kurtis is enrolled in a program for hearing impaired children and is developing communication skills through the use of sign language. Oh ya, we just figured out he is able to sight read many of the early learning words. Exciting stuff!!!

We live near Vancouver BC, Canada. The past 4 years have been a roller coaster of experiences. You sure do find out quickly who your real friends are when you have a child with special needs. I am constantly amazed at the love and support that people are willing to put forth for a child. It truly does take a village to raise a child.

We have done a number of alternative therapies with Kurtis and to date the most effective has been HBOT. We are continally amazed at the changes we witness from this therapy.

Kurtis will be receiving his first wheelchair in a week or so. The approval for funding just came in the mail today so I guess that will officially make him a big boy. Tough for Mom to admit that but life goes on.

Well, TaTa for now. Hope to see some new faces around here soon!


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Postby Tmagic650 » Tue May 23, 2006 9:07 am

My grandparents as well as my parents brought me to a private orthopedic sergeon when I was five years old (1955). Then I began to undergo 6 muscle relocations/lengthenings over a time period of 12 years. I can walk without assistance in my home, but I do use 2 canes and a wheelchair when I am out and about. I have been married 3 times all to AB women. My current wife Ella and I have been married for 6 years. I played wheelchair basketball for 10 years in the National Wheelchair Basketball Association. I am a retired Electronics technician. I build and repair computers in my home now. I am over 6 feet tall and I weigh about 187... That's big for a person with CP
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls

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Postby solgen » Sun Aug 06, 2006 9:37 am

May I ask Lori Ann to explain to me what is HBOT theraphy? It might work for my son.

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Postby Lori-ann » Mon Aug 07, 2006 8:31 pm


HBOT is an acronym for Hyperbaric Oxygen Therapy.

Here is a link to a website with a lot of information;

There is much information on the internet about this treatment.

There is a yahoo group called Magicgunshot. Many of the parents there have used HBOT or are currently using HBOT to treat their children.

There is also a yahoo group called NeuroHBOT where you can write your questions and get responses from many parents and professionals.

If you have a child with cerebral palsy or any type of brain injury, I highly recommend that you consider HBOT as part of the treatment regimen.

I hope this helps. Feel free to ask any questions you may have.