Here! here!
Exercise, exercise, exercise! It all pays off in the end ... big time. Been there,
done that - at the hands of my mother, 4 times daily for 13 years. In other words,
to coin a phrase - "use it or lose it".
Cheers!
Carla - 45 year old spastic diplegic and still uprightly mobile
http://www.brunnet.net/terrier for more about me
Oliver Gernand wrote:
> Hi all,
>
> ever since he was 7 months old we have started Bobath therapy for our son Can,
> who is challenged by quadroplegic CP. He is now 20 months old. In the beginning
> we had 3 times a week 30 mins of PT, then for 3 months 5 times a week, not back
> to 3 times a week, always 30 minutes sessions. We did participate in almost 4
> weeks of Petö therapy in Budapest Hungary, which was 2 hours every day. We are
> scheudled to go back there in Spetember. In the past 2 weeks, we did 3 to 4
> hours 6 days a week on Bobath PT. On top of all this, Can is going "swimming"
> twice a week plus all the exercises that we do.
> He is now much more mobile and agile, he is beginning to sit better, but not yet
> absolutely free, when placed on all four limbs, he will do the stepping with his
> hands and will sometimes also pull the right leg forward, but he is still far
> from robbing or crawling, not to mention walking.
> Still, there has been constant progress over the past 13 months. He is saying
> Mama and Papa now and is babbling away a lot (like I am probably doing just now
> :-)). It is slow, but it is constant progress and it is very amazing for us, the
> parents, to note his great achievements.
>
> My advice to all parents out there with babies or young children dealing with CP
> is to keep the faith in your child and to continue exercising. A LOT ! Don't
> listen to doctors OR PTs. Just practice A LOT ! Make it a game all the time, it
> is important that the baby has fun and smiles. Stop when there are signs of
> annoyance. Then try again. As they get older, you may try to be more insistive
> on the exercises.
>
> Our biggest problem is the different advice we get from all over the place. The
> PTs at Great Ormond Street Hospital told us to use a stander, our local PT here
> in Germany told us not to, and not to put Can on his feet either. Petö says, you
> MUST put him on his feet as well, and Dres.Delacato have given us yet another
> set of exercises.
>
> Best regadrs, OG
>
> Barry Ashby wrote:
>
> > Hi,
> >
> > I have a 4 1/2 yr old with athatoid CP. Where therapy is concerned, I am a
> > firm believer in the more the better, especially in the first 5 years. The
> > brain is continuing to form neurons and neural pathways. The more therapy,
> > especially with good follow up at home, the better the chance that the
> > brain will form pathways around the injured areas. My Stephen has
> > progressed far beyond what anyone thought he would and is sitting,
> > crawling, and pulling up everywhere (this is a problem since he still
> > doesn't have much balance or the protective movements used when one falls).
> > Still we allow as much freedom of movement as possible, despite the trip
> > to the ER for staples after a head laceration.
> >
> > AFO's have been helpful in maintaining a continuous stretch on his achilles
> > tendons (I've been told that to be effective the stretch should be
> > maintained for at least 20 min.). He has very tight tendon/muscles in all
> > his joints. The AFO's also give him support while he is walking or
> > standing and his feet are areas of the body that he doesn't have to try and
> > control himself and can concentrate on other body parts while moving around.
> >
> > We also use soft knee immobilizers at night while he sleeps for his
> > hamstrings (also very tight). I was worried that we would stretch him
> > during the day then watch him spend 10 hours with his legs pulled up in a
> > fetal position. These have helped a great deal also.
> >
> > Do you have a stander yet? You might check with your PT to see if one
> > would be appropriate for your child. This also helps with stretching but
> > more importantly it allows the child to put weight on the hips, joints, and
> > legs to encourage better development.
> >
> > These early years are difficult for you...often feeling like a roller
> > coaster ride. It does get better! Good luck to you all, it sounds like you
> > are on the right tract.
> >
> > Best Wishes,
> > Kim
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