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Evans_Dad 04-01-2006 12:55 PM

Our little boy - Mild Spastic Diplegia
Hi. Newbie, so pls excuse lack of correct terms, etc.... (btw - Im in the UK)
My little boy is 2yo in a couple of weeks (16/4/06). He was diagnosed with mild-cp last year (may). It has taken a while to get our heads round this but support has been great and he is responding really well to physio.

However, his heels are quite tight and we arent sure if AFO's will be required / provided quite yet.

Does anyone have any advice on what is possibly on the horizon in terms of developmental problems / milestones that we might expect.

Any "good news" stories would pick me up a little bit right now. Evan is a lovely, responsive, cheeky, intelligent little boy. He even has a fave "knock knock" joke at the moment.... i was just trying to see "whats next" ?

Can anyone offer any help / advice.


jandd 04-01-2006 04:21 PM

Re: Our little boy - Mild Spastic Diplegia
Sorry about the diagnosis...
I'd be happy to share our story. How is your child affected by CP? Did he miss any milestones?

skigirl1689 04-01-2006 04:54 PM

Re: Our little boy - Mild Spastic Diplegia

I have spastic diplegia and am 16 years old. When I was diagnosed the doctors told my parents that I'd never walk. In the beginning I was very floppy and they didn't know what my mental capabilities were. Now I am in a regular school taking regular classes and getting straight A's. I do have an aide at school that writes for me and helps me get around. I learned to walk when I was about 6 years old and am able to walk pretty good but have balance issues. As for milestones to look for, everyone with cp is different so don't panic if it takes your son longer to reach milestones. I'm not sure about him having tight heals and AFOs, I wear them becauser my feet point downward at the ankle. Cp is different in all people but from what you have said it sounds like you son is very bright. I hope this gives you some hope.


kemikem 04-01-2006 06:22 PM

Re: Our little boy - Mild Spastic Diplegia
Hey, i am 20 years old now and i was diagnosed with mild spastic diplegia also. I think you might like to know that i am in my second year of university, i live on my own, have my own life and life just about like any other 20year old women would do. The only thing different about me is that with my walking my legs are directed inward and i drag my right foot, but with some surguries that i am looking into that too could get better. So keep your chin up, and one thing my parents did for me which i am forever grateful is that they let me try every activity that i wanted to do and the wouldn't let me give up, i got to relailze my limitations on my own.

Barrymoney 04-06-2006 08:04 PM

Re: Our little boy - Mild Spastic Diplegia
Hi Andy,

I don't post here often, but I thought I'd respond to your request for "good news." I'm a 30 year old woman, who was diagnosed with mild spastic diplegia at about Evan's age. I had two surgeries on my achilles and hamstrings when I was a child, and now walk unaided fairly easily. (Sadly, not gracefully I have to admit.) Keeping my legs in good working order is sometimes a chore, but it's part of my personal routine like brushing my teeth or dying my hair--except it involves some sweat. I work out regularly and am training for a 5K charity race. (It won't be pretty probably, but I WILL finish!)

I left home at 18 and went to a well-regarded American university and spent 2 years living in Edinburgh and earned a postgraduate degree at the Uni there--which is living abroad for me, since I am a US native. I currently live on my own and am gainfully employed (if not happily, at the moment!).

My advice, like others here, would be to encourage your son to try whatever he develops a passion for. The greatest gifts my parents gave me were a good sense of humor, the stubbornness of a mule, and the belief that I could do anything other kids could do--I just had to get creative sometimes! They let me succeed and fail on my own merits. While sometimes it was painful and frustrating, I am very grateful that they treated me no different than my sibling.

Persistance and good humor can get you just as far in life as talent and good luck. Right now it might feel as though you've had a run of bad luck, but it sounds like Evan is gifted in the humor and persistance departments!

I'd be happy to share whatever I know that might be helpful. (Investigate hippo-therapy programs for children with CP. I was in a program as a child and I loved it. Riding horseback was something fun that I got to do that the other children didn't. It lessened the disappointment of not being able to participate in most team sports, and is good for gait and flexibility.)

Best wishes to both of you.



vermontcp 04-12-2006 07:35 PM

Re: Our little boy - Mild Spastic Diplegia
Hello, Evan's Dad,

I just want to give you a little reassurance about your lovely son. My son has CP, and is now 13. When he was diagnosed, we were very worried about how things would go for him. Now, I look back and wish that, when he was 2, I could have seen him at 13 for just one minute. I wouldn't have worried so much. He wears AFOs, and walks with crutches, but he's doing great. He is making straight A's in school, has lots of close friends, was elected an officer of his school council and sings solos in the choir. He is happy, funny, healthy, and a joy to be around. The most amazing thing is that, when asked, he says that if he could magically make his CP go away, he wouldn't. He feels he's had more benefits from it than liabilities. He radiates such positive energy that he's really never been teased or exluded by other children. The secret is to build his confidence. Let him know, every day, how much you love him, and that you feel you are the luckiest person in the world to be his Dad. Because you really are.

Zagreus 04-14-2006 06:58 AM

Re: Our little boy - Mild Spastic Diplegia
My son has mild spastic hemiplegia. Until he was 10, he wore a brace (and still wears one at time to keep him stretched while he sleeps). It's crucial to keep your child in physical therapy (gross motor skills) and occupational therapy (fine motor) if you can. You may eventually also explore botox therapy in conjunction with therapy -- the botox can sort of "supercharge" the effectiveness of therapy sessions for several weeks and is worth exploring with your doctor at some point.

Expect great things. Our son has done very well academically -- he's probably the brightest kid at school (sorry, I'm boasting). Expect frustration. He wants to be able to run as fast as the other kids or do as well as they do at crafts, but his disability means he's a bit awkward in sports and has trouble with arts and crafts. But he has an immensely solid sense of himself and stalwart character. He's not nearly as subject to peer pressure as his sister is. Maybe he's had to be more independent psychologically and spiritually because of his disability.

Watch for little things at school. For example, writing things out by hand is a real chore for my son. He does a lot of work in his head because it's hard for him to write out notes or math problems legibly. We finally got him a laptop. He can type as fast as others write and having a laptop has made school much more fun for him because he doesn't have to struggle against the disability. Math was a challenge for a while because he has trouble getting numbers and things lined up. There's computer software to help with that too. You need to watch for things like that and be an advocate for your child in school settings and other settings.

But, trite as it may sound, every child is different and presents challenges to us as parents as we raise them. Sometimes, frankly, our son has presented fewer challenges than his able bodied sister, and sometimes more. Expect wonderful things of your child and help your child learn to expect a lot of himself too. That's important because there will be times when you have to reinforce expectations and push your child. Some of the hardest times with my son came when he was younger and I had to push him to confront and conquer a physical challenge that frightened him -- going up stairs, using an escalator, hiking up a winding, steep path with his friends in scouts. It often seemed easier to give in to the insecurity and tell him it was okay not to try, when in fact I knew he could meet the challenge. And he did and as a result he learned not to be afraid of physical challenges.

Just remember, you'll find your path together with your son, especially if you have the assistance of a good neurologist and/or orthopaedist and of good therapists.

joromo703 04-25-2006 01:22 PM

Re: Our little boy - Mild Spastic Diplegia
You asked for some good news stories, and here's ours:

Our son is turning 4 this summer. He also has mild spastic diplegia, and he is doing great. If you saw him sitting at a table eating dinner, you would have no idea he has a disability. He can't run as fast as other kids, but he can run. He has PT and OT 3 times a week, but he sees it as lots of fun--he gets to play hockey and do all sorts of fun stuff.

He currently has orthotics in his shoes but no braces on his legs. He gets botox shots every 3 months which really seem to make a great difference in his flexibility (though they decrease his strength) We are considering SDR for him next year. We'll be taking him to Minnesota for a consult at Gillette.

He still has problems with stairs, but he walks just fine (though the disability is noticeable). We're working on the stairs.

His speech is fine and his vocab is advanced for his age, according to his OT. No mental issues apparent yet. He is a really happy kid. Always smiling. Loves watching football and hockey. Only kid his age I know who will sit through a whole hockey game (though the french fries help). We feel very lucky.

Best of luck to you and your family. We wish you all the best.

cutekyliefan 04-30-2006 04:00 AM

Re: Our little boy - Mild Spastic Diplegia
Dear Andy,

Hi there, I have spastic diplegia, which was diagnosed when i was a year old. I am now 29 years old, married living a very independant life. I use crutches to get about, but i also drive and have had 3 jobs since i was 21. I am now a very contented housewife.

I have had numerous surgeries, but i can truely say that the work that was put in by my mum in the early days had a great deal to do with my independance now, you guys can do more than you probably feel is possible, have faith in yourselves, and dont be afraid to push him as far as is reasonable, as a child i hated physio, but i know now that they had to push me to get me walking. I cant say im a big believer in AFO's (I wore them for years) as i think they contribute to muscle wastage, they can cause blisters and be very uncomfortable in hot weather, but you MUST do as you feel is right for your son, but i would think hard about it or get a second opinion. Do you get Disability Living Allowance for him? If you need any advice on benefits do ask as i am also in the UK.

Lots of love

Zoe xxx

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