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LadybugsMommy
07-13-2004, 10:48 PM
My 19 month old daughter was diagnosed last week with Spastic Diplegia after having an MRI to confirm the pediatricians speculations last week. We have already been to see an orthopedist and have a neurology appointment that is a few months away. I'm searching the internet to try to find anything and everything I can to help my little girl.

The doctor said that her CP is "mild" and I can find little about this on the net. The orthopedist just kept saying "It's too soon to really tell." So, I'm just left now worrying and wondering what the future holds for my little girl.

She just took her first shaky steps last week :) and it was the most magical moment of my life.

Is there anyone else out there with a child who has spastic diplegia or maybe some experience with it? I would love any information you could provide me. I'm just wondering what else goes along with this diagnosis? She is constipated often, and gets tired easily. Do these things come from the Spastic Diplegia? The orthopedist mentioned that she may need surgery later on, is this a major operation and will it be very traumatic for her?

Sorry for all the questions, but I'm just very worried about my little sweetie pie. Thanks.

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nutcase16
07-14-2004, 01:14 AM
Hi Ladybugs Mom,

It's so great that your daughter started walking! That must have been an amazing experience.

Along with many others on this board, I also have spastic diplegia.

I started physical therapy at 18 months (when I was diagnosed) and am still at it.
I'm not sure constipation is a side effect of cp, but I don't know.

I had something done when I was 2, but not sure what it was (surgery related I mean).

When I was 14 (in 2000) I had tendon lengthening surgery (hamstrings, right achilles, and aductors) and that was the last surgery I had. I've worn a leg brace up until then and am free of it since :D

I think you'll find from these boards that cp has a wide range of effects on people, but there is no reason why your daughter cannot grow up happily and healthy doing many of the same things non-disabled people do. One thing I can tell you is that cp puts an interesting perspective on life!

I'm sure you'll find a lot of advice and encouragement on these boards!
Oh, and one thing to remember is physical therapy should be a fundamental key in your lives!

Oh (sorry for the long post) one thing I learned from these boards is that an exaggerated startle reflex comes with having spastic diplegia, just so you are aware!

Hope I helped a little!
Mollie :D

OrbOfConfusion
07-14-2004, 07:40 AM
Hi there LadybugsMommy :),

Congratulations on your daughter's first steps. That's about the same age my daughter took her first steps too.

I know right now you feel very overwhelmed with your daughter's recent diagnosis. But here soon your daughter will most likely have a whole team of medical professionals and coordinators who will ensure she has the best course of treatment and who will provide you with information and support.

I have a 2 1/2 year old daughter with spastic hemiparesis cp or "mild" cp as termed by the neurologist. She was diagnosed about 6 months ago. The cp affects her right side. She is very happy and healthy and she compensates well for her weak side.

Feel free to ask any questions in this forum. Like nutcase16 said, you will find lots of advice and info from people who have been there. Everyone here has been very helpful in my quest for cp knowledge.

Take care,
Melissa

Zagreus
07-14-2004, 12:35 PM
My son's left side is affected and has been in therapy since he was about 15 months old. He's undergone botox a few times and at the age of nine (nearly ten), had tendon lengthening. For the first time in his life, he's not wearing a brace, at least for the next couple of months.
He was very anxious about the surgery, but it was really a relatively easy procedure. He wore a cast for 61/2 weeks and has had some discomfort, but as he retrains and strengthens the muscles that disappears. He's doing wonderfully.
Physical and Occupational therapy are essential. Keep up with that.

And I remember how relieved we were when he took his first steps. I know what you're feeling.

Have you seen a Physical therapist yet? If not, have the neurologist or orthopaedic specialist give you a prescription for PT as soon as possible. Early intervention is important.

Flycatcher
07-14-2004, 09:22 PM
Welcome LadybugsMommy! Congratulations on your daughter's first steps, I'm sure that was overwhelming. As everyone else has said, therapy will be very important (physical, occupational, perhaps speech, etc.).

The diagnosis can be frightening but the truth is that many of us here, myself included, were diagnosed as having "mild" CP and for the most part we live "reasonably normal" lives. There's all sorts of things I do slightly differently then able-bodied people but I've learned how to overcome many of life's little obstacles.

Feel free to ask questions when you have them, I'm sure someone here will be able to explain the various terminology and procedures that your doctors might refer to. Most of all, try not to get too discouraged -- your little girl's determination may very well surprise you.

Jack

 
 
 




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