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Old 05-14-2012, 05:53 PM   #1
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Mamacrisp HB User
My 18 month old has Mild spastic diplegia

Hi i was wondering if anyone can give me any insight my son has mild SD he is 18 months old and is walking nicely now he is wearing SMO's he is in PT OT and started speech today (he has 0 words only a "ra ra" babble)
i know CP can not worsen but more challenges come with milestones. i have heard or should say read a few stories where children walked at a young age and still ended up in a wheelchair
is there anyone that this has happened to if so can you explain it to me in detail
i am just so afraid
you look at him and you wouldnt even know he has this. hes a real trooper its hard to believe we have come so far in these long 10 months and that could all change and he could still end up "worse" (for lack of a better word)
thank you i hope to hear from you soon...

 
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Old 05-18-2012, 05:19 AM   #2
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nwmom HB User
Re: My 18 month old has Mild spastic diplegia

My PT always said to just give him the best baseline you can now while he is young, with stretching and exercising. And of course, help him to genuinely like himself, whatever his disposition or situation is, and he'll have the tools he needs for life.

 
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Old 05-18-2012, 09:20 AM   #3
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Sherlock7437 HB User
Re: My 18 month old has Mild spastic diplegia

At 14 months, my daughter was diagnosed with CP (mostly right lower extremity, but also some right upper involvement) after a very difficult birth (cord around her neck). We were told by multiple specialists that she might be mentally retarded and would never walk normally.

She had PT OT and speech, and in elementary school she was in special ed part of the day for learning disabilities.

She's 17 now. I wish I could post a picture: She's beautiful. She has no physical signs of CP at all, none. Her speech is fluent-- trust me, she talks constantly. She is into theater and has won multiple awards for her singing (yes, singing), dancing, and acting skills. No one who knows her history can believe it.

I can't tell you how much I wished for someone to tell me there could be a good outcome when my daughter was your child's age. I know she's a miracle, but miracles happen. Kids are resilient and respond to early intervention.

I hope this email has given you a picture of his future that you can hope for.

Blessings,

Sherlock

 
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Old 07-29-2012, 03:26 PM   #4
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cp4ag HB User
Unhappy Re: My 18 month old has Mild spastic diplegia

Quote:
Originally Posted by Mamacrisp View Post
Hi i was wondering if anyone can give me any insight my son has mild SD he is 18 months old and is walking nicely now he is wearing SMO's he is in PT OT and started speech today (he has 0 words only a "ra ra" babble)
i know CP can not worsen but more challenges come with milestones. i have heard or should say read a few stories where children walked at a young age and still ended up in a wheelchair
is there anyone that this has happened to if so can you explain it to me in detail
i am just so afraid
you look at him and you wouldnt even know he has this. hes a real trooper its hard to believe we have come so far in these long 10 months and that could all change and he could still end up "worse" (for lack of a better word)
thank you i hope to hear from you soon...
Hi, My daughter is 8 years old and has mild spastic diplegia. She wasn't diagnosed until she was 3 years old. She was a late walker (2 years old) but her father noticed that her gait was different than the other kids in day care. We took her to her pediatrician who said her walking was fine, but we insisted on a referral -- long story short she ended up with a CP diagnosis. But she started out looking almost normal.

We have followed all of the recommended treatments including regular PT and botox injections. We have just got news that she will need major multi-level surgery in a couple of years including a derotational osteotomy, hamstring and gastroc lengthenings and possiibly something to derotate the tibia too. Her mobility has decreased over time, so my fully independently walking 3 year old is using a walker to get by at 8 years old and we are told that she will likely end up in a wheelchair by the time she is an adult.

I am devastated and wish that the Doctors had told us this when she was originally diagnosed. The literature that I have read says that reduction in mobility is expected in most cases like ours.

I am sharing this, not to scare you but to help you to have realistic expectations for your child. I've been where you are and I wish that someone had told me the truth from the start. You will discover a strength that you didn't know you had and you will get through it.

The best part of this story is that my daughter is a bright and resilient child who has a fantastic attitude (she is my hero). She has bounced through all of the treatments that she has had and continues to have a positive attitude about everything. She doesn't know that she has any limitations, she just figures that she does things a little differently than her friends.

We will get through this and come out smiling, as I'm sure that you will.
Take care.

 
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Old 07-29-2012, 04:00 PM   #5
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Sherlock7437 HB User
Smile Re: My 18 month old has Mild spastic diplegia

Quote:
Originally Posted by Mamacrisp View Post
Hi i was wondering if anyone can give me any insight my son has mild SD he is 18 months old and is walking nicely now he is wearing SMO's he is in PT OT and started speech today (he has 0 words only a "ra ra" babble)
i know CP can not worsen but more challenges come with milestones. i have heard or should say read a few stories where children walked at a young age and still ended up in a wheelchair
is there anyone that this has happened to if so can you explain it to me in detail
i am just so afraid
you look at him and you wouldnt even know he has this. hes a real trooper its hard to believe we have come so far in these long 10 months and that could all change and he could still end up "worse" (for lack of a better word)
thank you i hope to hear from you soon...
Mamacrisp,

I hope I can give you some good news. My daughter was 14 months when she was diagnosed. Right-sided spasticity was treated with serial casts and an AFO, and by 18 months she was walking, completely normally. I worried about whether the symptoms would come back, too, but they didn't.

However, her language and speed development seemed slowed to me (I'm a clinical psychologist). We had her evaluated and treated by the best in town, several times throughout her childhood. She did acquire language quickly after a few months of therapy, but her acquisition of letters was very difficult in kindergartin. In 1st grade she was diagnosed with LD and received some special education, which did not affect her self-esteem one wit. I put her in horseback riding (not therapeutic; we're talking competitive jumping) to lengthen her healcords and giver her maximal core strength. To my amazement, she won ribbens.

Now she is finishing high school. She is truly the love of my life. She loves performing in musical theater, and sings and dances beautifully. She has to work extra hard at school, but she will be able to handle college fine. She has no physical symptoms whatsoever. She has a lovely boyfriend and many, many friends. She will make her own way in life.

Never, ever, ever give up. I'm convinced that the high quality early intervention she had made all the difference. Whenever I was worrried, I took her for evaluation. All that treatment was so worth it.

Let me know if there's anything else I can do to be helpful. I just really wanted you to hear a story with a great outcome-- and ours is certainly that.

Sherlcok

 
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Old 07-29-2012, 04:14 PM   #6
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Re: My 18 month old has Mild spastic diplegia

Hi,
I do not know what my diagnosis is/was since my parents never told me, but I was in PT for a long time for various motor delays and saw a rehabilitation physician. I have left-sided weakness and a lot of cooerdination/balance problems. I walked at 14 months which is normal. Now that I'm in my twenties, I notice my balance/coordination getting worse, but I have not yet been evaluated for this so don't know if it's related ot my motor delays. I cannot tell what yoru son will be like when he's an older child, teen or adult. Each person with CP or other motor delays is different. However, I agree with the person who said give himt he best baseline you can givie him by doing exercise etc. Your son will be just as unique and special as he is now even if he ends up getting worse. Also, if you spend your days worrying about him deteriorating, you will hav eless time to raise and most of all love your beautiful son.

 
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Old 08-02-2012, 08:23 PM   #7
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Airframes HB User
Re: My 18 month old has Mild spastic diplegia

My 2 year old little boy has spastic diplegia and I came to this site hoping somebody that is older and has that condition can maybe shed some light for me on what it is like to grow up with it. We have been doing pt for about 7 months and though we have seen big improvements in our little boys mobility I wonder if his activity now will serve as a catalyst to the deterioration of his hip, knee, and ankle function. We were just prescribed baclofen and told he would be reevaluated in six months and given Botox injections in his calves and right hip. He can almost walk independently, he mostly has issues with balance, scissoring, and his right hip turning inward when he walks. I wonder if giving this drug to my kid is the right thing to do or if it's long lasting effects will outweigh the benefits. He isn't old enough to be able to clearly explain things to us so any insight from somebody who has walked a mile in his shoes would help us enormously. Thanks.

 
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Old 08-03-2012, 11:33 AM   #8
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nwmom HB User
Re: My 18 month old has Mild spastic diplegia

Have you checked into SDR vs. the pump and Botox? That's the route we went with our spastic diplegic son.

 
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Old 10-19-2012, 06:45 PM   #9
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wendya2J HB User
Re: My 18 month old has Mild spastic diplegia

Hi! I am actually a pediatric occupational therapist, and I have seen many children of all ages with the diagnosis of CP. Every single one has been different! And every single one has taught me so much and has inspired me in one way or another. The best advice after being with families of children with one special need or another is to treat them as any other child, nudge them to move forward, keep life fun and not too overburdened with therapies (but do the therapy, especially when they are so young). Challenge them and love them just like you would with any other child. Be amazed at what they can overcome to keep moving forward!!!

 
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