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Okay, I'm going to try and get through this without sobbing. Today my son (former 30 weeker) saw a neurologist and was diagnosed with cerebral palsy. I'm terrified how this will affect his life. The neurologist told me that it is very mild, he doesn't even think he will need brace...but his PT tells me otherwise..who am I supposed to believe?
Oh I am so sorry! Hugs...I would go, personally more with the PT, they see your son more than the neuro. I will be thinking of you and ur son.
I am sorry..but what made the nuro give him this diagnosis??? Was he doing something?
he has increased tone in his legs. I would rather believe the neurologist but I know that his PT sees him on a regular basis. The neurologist has higher medical knowlegde then his PT, because Physical Therapists are not doctors(keep in mind)...I seriously want to trust the neurologist because his PT is not a very positive person when it comes to progress, she gives me no hope on what he will be able to do, but for some reason or another I like her and I'm not sure why...Maybe its because she pushes me to do more exercises..His neurologist told me today that my son will be able to run in flip flops one day like all of the other "normal kids" and I sincerely want to hold onto that hope.
I am sorry to hear you are getting such challenging and different opinions.
Have you discussed your PT's observations with the Neuro or your pediatrician. We have an intermediary between us and the therapists (called a Family Resource Coordinator) that is employed by a 3rd party (part of our State's 0-3 program). If so, I would encourage you to talk with them about the challenges you are experiencing with your PT.
Sometimes we bump heads with our PT, but overall we are fortunate to have a great team of 2 that alternated seeing DS. Hang in there.
A couple of questions...
How old is your DS? How long have you been working with EI? Have you met with a Neurodevelopmental Pediatrician. We meet every 6 months and he is great - very knowledgable in all aspects of child development for children born prematurely and with special needs. He is at our local Children' Hospital in their NICU Follow Up Clinic and Rehab Center.
First, I am so sorry you have received this news. If I were in your situation, I would tend to side with the doctor, but to make myself get better informed, I would get a second opinion as well, and ask a ton of questions. I wish you the very best.
My son is 17 months, 15 months corrected. I told the Neurologist today everything that his PT is concerned about. He explained to me that my son has one ventrical that is a little larger then it should be. This usually signifies brain damage, but he said he really can't say that it is damage for sure. But it makes sense, because it's in an area of the brain that affects leg/foot movement. My son has Spastic Diplegia.
He has been involved with E/I since june and his PT just increased to once a week. He has seen a neuro/developmental pediatrian twice since his birth, both times they told me that they didn't think he had CP. He goes on the 12th to see a new one so hopfully we can get a better idea of what this is.
Hi mommyinneed!
I'm so sorry you had to hear that diagnosis. Zoe was recently diagnosed with CP too, also mild, but it affects one leg and arm (hemiparesis). I expected her to eventually be diagnosed with CP since she had a grade iv ivh, but the diagnosis was still hard to hear because it means she has something that won't just "go away". It's great that the neurologist thinks your son won't have noticeable differences from other kids. My case is the opposite- the neurologist thinks that Zoe could get better or worse, and we have already had a brace made for her leg based on his recommendation, but the PT insists that she'll be fine in a couple of years, and doesn't need the brace at all! Of course I'd rather believe the PT, but the neurologist is clearly a lot more educated about CP.
Just remember, your son is exactly the same person that he was before being labled with the words "cerebral palsy". When I tell people about Zoe getting therapy, I say it's for "stiffness due to prematurity", which is really all it is. Right now people can't tell she has it, and it doesn't affect her life too much, except for making her very cautious physically (she is 10.5 mo adjusted and trying to cruise a little but afraid of bumping her head). I'm afraid that in the future her hand stiffness will get in her way, making it hard to tie her shoes, button things, etc, but we are in PT and OT 3 times a week to avoid that outcome.
I was wondering, does your son walk yet? People are starting to tell me that Zoe will walk soon, but I imagine it will take her quite a bit of extra time. After all, my husband (also a preemie) didn't walk till 18 months, and that was without CP. That's a lot of months of annoying comments from strangers!
hi!
My son will 4 in 6 weeks and he survived IUGR in utero (3% at birth) as well as hypoxia which caused brain damage.
The finding was confirmed by *contrast* MRI under sedation.
A neurologist saw John when he was 20 months old. At that time John was:
Non verbal (not even babbling)
Was walking on his toes
Had hypertonic lower torso
Couldn't point to any simple body parts
Couldn't follow directions (i.e. bring me the ball)
Didn't turn when I called him (but he could hear)
Was flapping his arms persistently
At almost four and after lots of nay-sayer Drs, John CAN:
Walk normally with a slight gait
Run in his own way (yes even in flip flops!)
Understand everything
Has a photographic memory
He speaks Greek (native), English and Russian
He can read simple words
Is currently being described by his teachers/therapists as "above average in intelligence/gifted"
His vocabulary is bigger than mine and he uses complex words and sentences
Is in mainstream pre-K class
And is also in the junior swim team!!
All those things they told us he wouldn't do, he DOES. He has friends and dreams of his future and is smart, and funny and caring...
John is unique but at the same time normal... and I love him BECAUSE he is that way :) not inspite of it!
CP is a blanket diagnosis to cover loads of things... of you have something off with your movement, hey you've got CP.
I don't take it seriously, it has never stopped my son!
He has been in therapy (OT and PT) for almost 2 years and he is doing G R E A T... in fact now, some people don't even believe me when I tell them John has brain damage whereas a few years ago, you could tell by looking at him, something was wrong!!
This is John's site:
http://raisingjohnjohn.blogspot.com
Please PM me or mail me with anything you might need... I will be happy to help!
Hugs
Tina
PS. There is an excellent Yahoo! Group called "Our Special Needs Children" that has a TON of parents of CP kids... also "KidPower" only has CP parents in there and there is at on of info!
Hugs
Tina
Hi and thank you all so much for the encouragment. It means a great deal to me. Especially to know that there are other moms out there that are dealing with the same issues as I am. I'm going to join that yahoo group! I need some extra support. Chocoholix, Your son truely inspires me! thank you
For starters, we need to realize that drs. are only humans no matter how much training they have had. They cannot see into anyone's future and know how life is going to turn out for them. When Lance was born I was told that he was going to be a vegetable, (which to me is a horrible term to use for a human being) in any situation. Well, I'd like to meet her today, 18 yrs. later! Granted, he does have cp with many disabilities, and I was just as horrified and scared as you are when I was first told that he would be disabled and when I realized that he really was going to be. But we've learned so much in all these years. His life is different from the average person, he has to do things differently and some things he can't do at all. But we've accepted the things we can't change and been oh, so grateful for the things that we do have. Some people might pity us but we don't want it. I have always corrected anyone when they would say 'poor little boy', we don't look at him that way and neither does he. He's always been the happiest child I've ever known and I wouldn't trade him for a hundred 'normal' kids. He's the most patient, loving, accepting person I've ever known. We can all learn a lot about life from these kids if we let ourselves. I'm not meaning to say that I don't understand how hard it is at your stage in this. I went through all these feelings, too, but I've worked thru them. I've just tried all these years to give him the best life possible for his situation and I think I've done it. If not, I don't think he would be as happy as he is. Sometimes I don't think he really realizes that he's different. He just knows that he's loved and has a good life. These kids are such a wonderful learning process as the years go by. Just take one day at a time and love him with all your heart and do the best for him that you can. You will be a better person for knowing your wonderful son and he'll be worth any effort that you put out for him.:) Guess I'd better stop here. Hope I don't sound like I'm just rambling! LOL
I thought I'd write a quick note about my 65 year old uncle that has CP. To this day, he walks on his toes, uses a cane, and he just got a scooter to help him go about his daily activities.
Now for his quality of life...
He's been married for over 40 years, has two grown daughters, and 5 grand children. He's retired from a great job, where he held a high level position. He used to golf, with a cart. He's considered the glue the holds our family together - whenever there's a problem, he's the one everyone calls. A matter of fact, I didn't realized his disability was CP until I was talking through my concerns with him when Adam was born early.
I asked him about if he had any problems as a child/teenager because of his problems walking. He said he did everything, didn't miss anything, and had lots of friends. In fact, he's missing Adam's 1st birthday because he's going to a reunion with the boys he grew up with (fine with me!)
I have a 30 weeker too, and I always worry about "will he be okay," etc... but I try to keep in mind that a disability, especially a mild one, would not mean that my son will miss out on life!
I thought I'd write a quick note about my 65 year old uncle that has CP. To this day, he walks on his toes, uses a cane, and he just got a scooter to help him go about his daily activities.
Now for his quality of life...
He's been married for over 40 years, has two grown daughters, and 5 grand children. He's retired from a great job, where he held a high level position. He used to golf, with a cart. He's considered the glue the holds our family together - whenever there's a problem, he's the one everyone calls. A matter of fact, I didn't realized his disability was CP until I was talking through my concerns with him when Adam was born early.
I asked him about if he had any problems as a child/teenager because of his problems walking. He said he did everything, didn't miss anything, and had lots of friends. In fact, he's missing Adam's 1st birthday because he's going to a reunion with the boys he grew up with (fine with me!)
I have a 30 weeker too, and I always worry about "will he be okay," etc... but I try to keep in mind that a disability, especially a mild one, would not mean that my son will miss out on life!
Also, he was born 65 years ago, before early intervention and so many other advances!
We have a MySpace page if anyone would like to see it. I'm proud to show off my beautiful boy!
http://www.myspace.com/lancesmom_1990
Thank you!
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