New to board & wanting to learn

[hermione72]

Hello to everyone and Happy Holidays,
I am a care provider of two children who have CP. I've not been told as to their exact Dx as far as the medical terms go. I also have been a substitute aide here in our local school district and have worked with children with all sorts of disabilities. Also my sister had "brain damage" as my mother would say, but as I read more of your great board, she had CP, but mother never wanted to say it. I have so many questions it seems about my sister and her death and with the children I watch. I am very close to them and want to see them be all that they can be.
The mother of the girl I watch seems that after almost 11 yrs. living with her child that she is quite in denial or something. Maybe I am just looking at things with the cup half empty. I would say that "Cindy" is mild to moderate CP. She can't walk on her own at all, and can not crawl, but her mental status is great. She is in a normal 5th grade class. Work is modified mostly in quantity since she moves at a slower pace due to muscle control obviously. But the thing that has me most stumped is that I read all these wonderful posts and I see that "Cindy" could do so much more if she had certain things, or had procedures done. She has had one done, she had the SDR done when she was about three. This helped her a lot from what I am told. But she is now almost 11 and she does not seem to be as far as she could be.
I guess to start my questioning would be to talk to some people about SDR and learn more about it and what kind of success stories there are with it. What needs to be done to make the surgery successful? What happens when you grow after the surgery? and on and on. I have read online what they do during the SDR, but its more about what kind of success should they really be looking for?
One night the mother and daughter got into a verbal argument about doing exercises to help "Cindy" be able to walk some day. The mother got her so upset she almost cried, and so did I. It was so heartbreaking. Do they ever get to be kids? It sometimes feels like her whole life is school and exercise. When she wants to be 10, her mother flips out on her. It is very hard to make suggestions to the mother, but I have learned you have to wait for just the right moment to do so. But I'm game to try. I just want to see "Cindy" be happy and help her as much as I can to reach her goals.
Thank you all for listening and for sharing about your lives and your children's lives. Many blessings to you all.

[nwmom]

Hi Hermione72,
It seems like the expected outcome is different for each person with SDR, but the doctor usually tells the family what the expected outcome is. The thing is, with SDR, you really have to do A LOT of therapy for a year post-op to see the maximum benefits. Kids are used to using tone pre-OP for strength and have to build up weak muscles post-op and then learn how to use them.
Do you know what her goals were for post-op? Does she have PT now, or just school PT?
I'm sure she can improve with home therapy and PT therapy now, but you'd probably need an experienced PT's advice or an orthopaedic's advice on what to focus on. Maybe you could talk with the mom to see where she is on all this, since she'd have to make the decisions here.
As she goes through growth spurts, her muscles will tighten. But there are things that help, like therapy, knee wraps and sometimes more surgery. Hope this helps! Good luck.

[hermione72]

Hello nwmom,
Thanks for the reply. I do not know what her post op expected outcome is. The mom never said what the doctor said, just what she said. She met some people who had this surgery done, and they were able to walk after the surgery, so she thinks her this will happen to her daughter. But she gets little to no PT. She gets her few days at school and that is it. She wants me to do some stretching with her, but I don't see it helping for one, and for two, I am technically not supposed to do it. I am not certified to do "teaching" yet. When I asked about a PT person coming to the house or something she made some excuse about being too busy with other things. Horse back riding and whatever else. I think it is more about time management. When I asked about the leg braces her father stated about her skin being so sensitive that she can't use equipment that goes on her body. She got a rash one time from her AFO's and I think that was the last time they used any kind of equipment that goes on the body. I have put the child through some paces asking if she can do this or that. She can't flex her feet and pointing is okay. She can't sit in a chair and spread her legs apart and together. She can't lift them individually. When she talks her WHOLE body moves to some degree. She can't stand alone for very long, not even with a walker or holding on to a bar. When she stands her legs are bent at the knees, knees pointed in, and toes pointed in. On her weak side, she practically walks on the outside of her foot. Her "walking" is real bad after riding her horse. I feel so bad for this little girl. Her mom will "tell" her to turn her feet right. I'm thinking lady, if she could she would. I know she would really benefit from some AFO type thing for her feet, but they will never do it.

[Deborah7]

Hello hermione72, Welcome aboard. Hope you enjoy your stay here and find what you are looking for.
Merry Christmas and Happy New Year,
Deborah

[nwmom]

I'm thinking maybe the parents are afraid of spending money for some reason on their daughter to get the things she needs. Maybe they don't know about special trusts that help kids buy things like braces if their parents can't afford it. Who knows? If you could talk to some pediatric PT's, they would probably have some ideas about how to get things funded in your area. Then you could just ask the parents if they knew about those places. Just an idea. Not sure if it'd change anything or not, because that may not be their issue. Good luck!
nwmom