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Cerebral Palsy board


Quote from emsie4321:
I tell you at the moment I feel that the whole of my waking life is looking on the internet, trying to pursuade myself that the diagnosis is wrong. I just end up watching her and thinking "Oh she seems better today, like any normal child" and then she just does her funny combat crawl and I think "Oh well, maybe not".


Trust me, I have been there. (I'm still there a lot!)

There is another way of looking at it.

CP is just a label. It isn't going to change anything about your child. It happens to be a terrifying label to a parent who has never learned anything about it, but it doesn't change anything. You already know that she has a preference for using one side of her body more, and that she uses a funny commando crawl.

Tonight my son had a light cough and was running a fever of 102.5. I gave him child Tylenol and his fever went down, so I put him to bed. If he's worse tomorrow, I'll call the doctor. If the doctor says it sounds like he has a cold or the flu, he'd probably also tell me that it doesn't matter if I DON'T bring him in (and therefore he wouldn't get a diagnosis). Whether he has a cold or the flu, he still would have fever, cough, runny nose, etc. The recommended treatment would be the same, and the result would be the same, regardless of whether he's given a diagnosis or not. (That's obviously not a perfect analogy...)

A CP diagnosis is basically just a way that doctors use to describe the constellation of symptoms that your daughter has so that they can help give her the therapy that will work best to help her achieve to her best potential.

For example, you mentioned that she is doing a funny commando crawl. The CP diagnosis (if given) could help the doctors be sure that the way that she crawls isn't due to some other problem, whether from another condition or from some random weird thing like you've been putting her diaper on too tight (note: that's a poor attempt at a joke, not a potential diagnosis!)

If they determine that the reason that she uses one side of her body more often and does a funny commando crawl is because of the way her brain sends messages to her muscles and vice versa (CP), they can prescribe various therapies for her that will help her (at this stage) to crawl "normally."

So, let's say that the doctor is wrong, and it is determined that your daughter does NOT have CP. Maybe they do come up with another explanation, maybe they say they just don't know.

Either way, your daughter still does a funny commando crawl and uses one side of her body more than the other. They are likely to recommend that you go to a physical therapist who will work with your daughter and teach you things to do at home with her to help her learn to use her "unfavored" side of her body. Most of these things will be simple things that you, as her mother, have already intuitively thought of, like making it a habit to hand things to her in her "unfavored" hand.

All of these things will help her to use her unfavored side more, and hopefully will help her to develop a standard crawl.

The doctors and therapists would recommend the same exact thing if she did receive a CP diagnosis.

It has taken us a year and a half to get my son's complete diagnosis, and it's still hard for us to deal with. But it gets easier ... I wouldn't say it gets easier every day, but it does get easier with time.

There is a big leap going from "my son can't sit well at 9 months and is a late crawler" to having a label slapped on him, especially a label like "cerebral palsy," that to my completely uninformed fears was a big scary disease.

Hearing those words from the doctor couldn't have been more shocking and painful than if he'd literally shot me with a gun instead of saying "cerebral palsy."

It took me a long time to come to grips with the fact that cerebral palsy was just the technical term that doctors used to describe the symptoms that we already knew our son had.

The longer that you live with your child's diagnosis (if she gets one), the more that you will come to see that it's only words. It's just a tool that helps the doctors to rule out other issues and to determine the best course of action.

It doesn't change a single thing about your child, and it does NOT define her. My son has cerebral palsy, and he also has brown eyes. But when I look at him, or think about him, I think about how much I love him and what a wonderful kid he is. I don't think about the fact that he has brown eyes, or introduce him to people as my son who has brown eyes. His brown eyes and his cerebral palsy are just "things" about him, and neither is one of the most important things about him.

More important is his happy personality, that he loves drums and music and that he has a wonderful belly laugh and says funny things.

I just hope that you'll start preparing yourself either way for the response from your doctors.

If you'd like me to post the articles I've found most helpful regarding how doctors make the CP diagnosis, let me know and I'm happy to post them. The link below is to a technical medical article, but it offers a 15-point Early Motor Planning Profile that is used to diagnose CP early.

[url]http://pediatrics.aappublications.org/cgi/reprint/98/4/692.pdf[/url]

You can call the national United Cerebral Palsy hotline for a referral to your local UCP office, who can hopefully point you to a support resource, or answer your questions directly. 1-800-872-5827

You can also try calling the UK's CP hotline: (011 44) 0808 800 3333. They are specifically set up to talk to parents about CP and their concerns.

You may also want to join CPParent -- it's not an admission you need it!!, but that would be a good place to post your questions and concerns.

[url]http://listserv.syr.edu/scripts/wa.exe?A0=cpparent[/url]

Best of luck to you. Be absolutely sure that you not only get support from your family and friends, but also online, and that you SCHEDULE some time to take care of yourself. It's something that's very important but that people tend to put on the back burner when they're dealing with a stressful situation like you're going through, but it will really be helpful.