One of the things I have been asked a lot over the years is, since I have a child with cerebral palsy, what I think is the most important thing a parent can do for the child's care so that they can thrive as much as possible. It's a great question and here are my thoughts.
First of all, let me say that CP is not a one size fits all illness. It effects different kids in different ways. Some it effects their upper extremities more, some their lower and some are equally effected all over. It weakens the muscles and either causes no tone or too much tone. Because of this, my recommendation to anyone who asks is, from the beginning get your child the best orthopedic specialist, the best neurologist and the best physical therapist you can find from day one. In some more remote areas, finding these top notch specialist may mean traveling and if that is the case, then I strongly suggest looking into a Shriner's Hospitals. Shriner's Hospitals are for kids and for specialty issues such as CP and the doctors at these hospitals are the best of the best. Shriner's also works with insurance if you have it, but if you don't, they foot the bill whether it is for therapy, examinations, surgeries, orthotics or anything that your child might need to give him/her the best outcome possible.
Let me stress to you that the sooner you get your CP child into a good ortho doc, the better. Immediately, even in infancy, they can start checking your child's tone, bones and movements and keep track of them as they progress through therapy, so if they find surgery to be necessary, they are on top of it. The second important thing....get in with a good PT as soon as possible. Even as a tiny baby, a physical therapist can start working with your child and help them to build muscle and work on their tone. Most PT's can now also cast children for orthotics and help provide them with any assistive equipment they need right from the start. Let's also not forget the neurologists part in all of this. Most CP kids do end up with some neurological deficits and like David, they have secondary issues to their CP, like Hydrocephalus and seizures. These require close follow ups with a neurologists. On down the line, the neurologists can also help with muscle issues too, such as Botox injections which help with tone and movement.
I can't emphasize enough how important getting your CP child followed by these docs and working with a PT are. These will be key to how well your child progresses as they grow and how much mobility they have.
As your child goes to school, if it is a mainstream public school, you will find that most offer minimal therapies such as PT, OT(occupational therapy) and Speech as well as special education classes geared towards kids that are not in the mainstream. My suggestion here is that you seek therapies outside of the school district. Ideally, you can get a school PT that will work well with an outside PT, but seldom does this happen. One of the problems is that in a school setting, your child only gets about 15-20 minutes of PT every week to two weeks at school. This is not enough for a child that has severe issues and needs to be seen much more than this. If the school PT works with the outside PT, the outside PT usually sets up the therapy plan and the school PT makes sure that it is followed at the school level. In David's case, this didn't happen and we finally just went to outside PT. It has been a much better situation for him and he has become much more mobile since we have gone outside.
Another thing I feel that is so important is surgeries. I know that it is terrifying as a parent to think of your little one having surgery, especially if it is a long one with a long recovery period. Let me just say here though, that as scary as the knee and hip surgeries can be, the earlier they are done, the better chance your child has at moving around and even walking. We waited until David was 12 and that was almost too late. We didn't have a great ortho doc at the time and he didn't believe in surgery on kids unless it was a last resort. We finally found our way to Shriner's Hospital in St. Louis and from that day, David's life changed. His mobility would likely have been so much greater had he had surgery at 4 or 5 instead of at 12, however I am beyond grateful for the mobility that he does have.
Finally, let me say that any doctor or therapist you choose, should be a good fit for both your child and you. Do your homework and ask around. Other CP mom's in your area are a great resource for these kinds of things. If for any reason your child doesn't work well with a PT or you don't feel that your child is progressing well, it is not only your choice to change providers but also your duty to your child. The same goes for docs. If you or your child aren't comfortable with a doc or you don't feel like you are getting his or her best efforts with your child, then change. These docs and therapists are going to be with your child for a long time to come and you want the relationship to be one of confidence and trust.
Cerebral Palsy, though chronic, can be improved on greatly with the right therapies and the right medical professionals guiding your child's treatment. Every day new therapies, new medical advances and new possibilities are changing the lives of CP kids and their families all over the country.
When starting out as a CP parent, don't be afraid. Remember that from this day forward, you are your child's greatest resource and his or her greatest advocate. Never be afraid to question or change a doctor or therapist and when you find good ones.....listen, learn and soak up every bit of knowledge you can. This will give your CP kid the best chance for the greatest life possible. And that folks is my advice to you.
Until next time.......
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