cerebral palsy

So my son was diagnosed with CP just a few days ago. I still have not come to terms with it. The guilt and the hurt I feel are completly overwhelming. I've been taking sedative medications everday just so I don't lose it. I've have terrible anxiety and panic disorder and I just feel like I'm in complete shock. When I took my son to the neurologist he told me that my son's MRI wasn't entirely normal, even though the results said normal. He also began talking about muscular dystophy! What the hell?? Then he proceeded to tell me that it's highly unlikely for him to have MD..after he went into detail about testing for it and what happens as it progresses...So the neurologist is pretty sure my son has cerebral palsy (very mild as he put it) but he examined my son while he was sleeping so I still don't know how to feel. I know that MD affects boys but it does not run in my family and my son shows specific signs to CP. I just wonder why did he ever bring it up. On top of CP I'm so worried about MD! He has spastic diplegia...does anyone have any advice?

By mygirlsmom
Posted October 3, 2009 at 10:29 am
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I don't have a lot of information, but MD does run in my family. In our case, it manifests itself in the men and women (50/50 chance of getting it if mom is a carrier) but the men don't typically transfer it, the women do. My mom's mom had it. Her left side of her body was typically weaker than her right, and she started using a crutch as she got older (around 40). Unfortunately, the kind of MD our family has focuses on one side of the body, and it was the left side, so it affected their heart strength. My mom did not get the gene, and therefore I am not a carrier as well. I would think that you would have a fairly lengthy family history of MD if your son had it - like I said, on my mom's side, about 30% of her relatives had it. I would definitely get another opinion about this. I would agree that it's unlikely.

By 1pair-n-1spare
Posted October 3, 2009 at 2:41 pm
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Hi,

I can't speak to the MD. But I can talk to you about Cerebral Palsy. My daughter Julia (pictured above) has Spastic Quadraparesis due to CP. She is 6 years old (almost 7) in first grade, and although she doesn't walk or talk without assistance, she keeps right up with her classmates with the aid of a classroom aid.

She has never been kept back from doing anything that her peers or her sisters have done. Inclusive of playing mini-golf, climbing rock walls, going on some rollercoasters, bowling, hell, anything that her Dad and I can aid her in doing, she does.

CP is not a death notice. It took me 2 years to come to terms with that stupid diagnonsence. They told us when Julia was 6 months old that she would be blind, deaf, and not be able to acknowlege our presence let alone our love or her love for us. I am VERY proud to say that Doctor was totally wrong, and ignorant of our daughter's fighting will.

So, today at 6, almost 7, my daughter RUNS with the aid of a gate trainer, talks with the aid of a computer (like Stephen Hawking), is doing basic math, and writing. She is not a compliation of her can't do's but rather a complete sum of her Can Do's.

CP is an umbrella term, that encompasses so many different facets of motor function and dysfunction. My good friend's son has mild CP, and the only thing this child can't do is put his two feet together and jump like a frog. His IQ tests in the 140 - 160 range, and at 6 (almost 7) he understands that he won't ever be a frog... but he understands that he can be a Nobel Prize Winner if he sets his mind to it.

Lisa

By Bklynmom
Posted October 3, 2009 at 8:26 pm
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It is awful that the neurologist brought up muscular dystrophy on top of diagnosing your son with CP! Is the genetic test quick for it? My daughter had a false positive for cystic fibrosis at her bewborn screening and even though I knew she almost certainly didn't have it, I went crazy thinking about it during the four months before we could do the test to rule it out.
Like Lisa said above, CP is not a death sentence, it's just a name. It sounds like your son has such a mild version of it that no-one will ever know about it as he gets older. I also feel bad some days about my daughter's mild CP, but she is so happy that I know she'll make the best out of life, all I have to do is help and encourage her. If the words cerebral palsy get you down, try thinking of it as stiffness. That's how I talk about it with other people, and it accurately describes the condition without making it into a horrible affliction.

By Chocoholix
Posted October 4, 2009 at 5:24 am
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Hi ya!!
He CANNOT diagnose MD without a muscle biopsy!!!! What the heck was he thinking!?!?
Put that out of your mind, but if you want to confirm or rule it out, press for a muscle biopsy. :)

Mild CP is nothing sweetie. Your little one will walk and will run and be a happy child... and remember you love him BECAUSE of it, because of the way he is, and well, if he is a CP kid, so what? :)
This is what mild CP looks like:
http://www.tinakewy.com/John/068sm.jpg
http://www.tinakewy.com/John/071sm.jpg
http://www.tinakewy.com/John/381.jpg
http://www.tinakewy.com/John/477.jpg
http://www.tinakewy.com/John/740.jpg
http://www.tinakewy.com/John/airfcorce2.jpg
http://www.tinakewy.com/John/airfcorce1.jpg
http://www.tinakewy.com/John/DSC00120.jpg
http://www.tinakewy.com/John/john1.jpg
http://www.tinakewy.com/John/john2.jpg
http://www.tinakewy.com/John/johndream1.jpg
http://www.tinakewy.com/John/johnswim1.jpg
http://www.tinakewy.com/John/johnwoody.jpg
http://www.tinakewy.com/John/makeasillyface.jpg
http://www.tinakewy.com/John/walkingtoschool.jpg
(in that last picture you can probably see "the gait" better; he is the shorter of the two. Notice how he leans his body to the right, holding his free arm, clenched and raised - he used to hold them all the way up in the guard position but we have come a loooooong way)

Like John, your little one, will do EVERYTHING and have a WONDERFUL life with his wonderful mommy!!
You CAN do this, listen to me, you CAN do this... and it WILL be alright... :)
I have been through what you have been through, first they told me he wouldn't be born alive, then he was, then that he would be mentally retarded and spastic, never talk or walk .... look at him now! Not only he has no mental issues, he is gifted!! :)
They don't know everything these doctors... they are not God!! :)
Please PM me if I can help or if you just want a chat!! :)
Many warm hugs!!
Tina

By Chocoholix
Posted October 4, 2009 at 5:27 am
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PS. I did not mean to imply that Cerebral Palsy is nothing as in "you are crazy" nothing, just what the others said above, it's not a death sentence and certainly not a predictor of your LO's future or what he can do!! :)

By mommyinneed
Posted October 4, 2009 at 10:06 am
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Okay, WOW...chocolix, At first, I couldn't even tell which one of your sons had it! Looking at your son is these pictures I can't even see one sign that shows CP!
1pair, Your daughter looks so healthy and beautiful! God bless you.
Bklynmom, Thanks for the encouragement. I know that this is very new to you and I see that you hold a lot of strength. again, your daughter looks so normal. I would love to be able to chat with you all because sometimes I feel so alone in this.

thank you all so much for every word of encouragement.
I spoke with my son's PT and she told me that my son shows NO signs at ALL for muscular dystrophy, infact she knew a CP diagnosis would come for my son. Every factor is working for CP not MD.

Welcome to Inspire!

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