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Cerebral Palsy Message Board


Cerebral Palsy Board Index


Re: New here...
Sep 10, 2007
[QUOTE=Marcus&DeanaMum;3201729]Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old daughter who has spastic displegia cerebral palsy and peri ventricular leukomalacia.She was diagnosed at 1 yr.
I am just wondering what the future is for her atm she can sit independently and can almost position herself to sit,commando crawls and pulls herself to her knees.She sees a st,pt and ot.
She is due to have botox in the new year and will also have surgery for her strabumis, she will also get afo's nex week.
I guess i am wondering walking etc.. wise what things will be for her. She is a very smart little girl.
Is there anyone who has children with similar issues..[/QUOTE]


My son is now 3 and he has CP diplegia. It is more like triplegia because his left arm is also involved and of course his legs. He is walking with a walker now, which took a year for him to use. You can't force someone to use it, but he is now willing, and very interested in doing so now(Thank God). He started getting Botox back in February 2007, and has since received it three times now (Feb., May, and then in August) it is basically every three months. It has helped him the first two times, but the third time it has been very hard on him because they gave him more units(200). There were a total of 10 shots. This last one he got, they gave him alot of botox in his hamstrings which really has paralyzed them, so he has to stand and use his hips more. It was very difficult for about the first 2-3 weeks because he wasn't used to using his hips and glutes(butt) and that way for walking. He is now adjusting, and I need to actually make an appt. tomorrow for a follow-up with the neurologist. I'm so busy. My son who has CP is a twin, so altogether I have 4 children. My husband is deployed so I am so busy.

You need to understand that every child is different and CP affects them differently too. Peter had a 2 grade brain bleed and periventricular leukomalacia too. I have learned this and am still learning so much more. Peter didn't get diagnosed with CP until he was 2 years old. They told me that he would walk when he is 3(they told me that when he was one years old). I never imagined that he would use a walker. I have had a very difficult time accepting this, but I and the family have come a long way. Everyday we see progress, and our Peter is a very happy and loving child. There are so many difficult moments, but you learn to deal with them one day at a time. We are truly blessed, and this has brought the family together even closer. You learn to appreciate things so much more. It is so difficult for Peter to just sit because every movement has to be broken down, and learned correctly. I really cherish the simple things in life now.

I hope my info. has helped you......thanks for reading........ :)





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