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    Old 06-27-2002, 06:35 PM   #1
    Asnton
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    Post New Diagnosis and Symptoms

    Hello Everyone,

    My husband and I are blessed with a wonderful 17 month old daughter who was diagnosed yesterday with Spastic Diplegia. She is very high functioning with possible language deficit. She's talking at a 14 month level so we'll continue to watch this. We are waiting on her MRI which is a month from now for more specifics. Other than what we were told by the doctor, we don't know much about this affliction.

    We assume that our diagnosis is mild but would like to hear from other about their experiences, symptons, therapies, information sources, etc.

    What are the potential issues that could spawn out of Spastic Diplegia in a growing, highly active toddler?

    What should we start doing now?

    Any assistance is greatly appreciated.

    Thanks,


     
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    Old 06-28-2002, 05:23 PM   #2
    Shaman
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    I am an adult with mild CP. The best advice I can give you is to treat your children with CP as much as possible exactly like children with out CP. I was "different" while growing up, and yes it slowed me down, but my mother never made a big deal of it, and so it never occured to me that it might mean I couldn't do whatever I wanted.

    It took me longer to learn to do almost everything but I can do almost anything. When I was born, the Drs warned my mother I might be deaf, blind & mentally retarded. They tried to convince her that I would never have a normal life. I think a degree from UC Berkeley (engineering no less!) and owning my own business has shown that the Drs are sometimes just guessing! My point is that you have to ignore the nay sayers, they seem to fail to grasp the impact of the human spirit. Don't let anyone tell you what your child will never do.

    I hope this helps a little


     
    Old 06-28-2002, 06:49 PM   #3
    Asnton
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    Thanks for the above response. I suppose it's too early for us to get frustrated about anything because to us, nothing has changed. She's still our wonderful little girl.

    What's odd to me is that she has no trouble, walking, running, climbing stairs or furnature at all. We have not seen any sign that she is physically impaired at all.

    She's 17 months old and only has a 3-4 word vocabulary but that is nothing to be alarmed about at this time.

    What she does is constantly flex and contract her legs with what seems little control. She's always crossing her legs and stretching them out. I thought we had a case of infant/toddler masterbation. I searched the web with these symptoms and that's what came up. Not one of the dr's that we've seen agreed with that thought though.

    She had congenital torticollis at birth and wore a headband for 6 or so months. That seemed to help.

    After hours of reading about Spastic Diplegia, I see that some of the symptons are present in our daughter but at this time very mild. I think and hope atleast.

    I believe I'm at the point of confusion really. We're going for the MRI mid July and will hear the results mid Aug. Maybe this will tell us more.

    Again, being diagnosed with this doesn't really bother me but I am very interested in finding out how a growing child's symptom's can worsen or even get better over time.

    If anyone can point us in the direcion of assistance, we would be greatful.

    Mike

    Last edited by Administrator; 03-10-2012 at 06:25 PM.

     
    Old 06-29-2002, 05:04 PM   #4
    Shaman
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    Mike-

    If you haven't done so already, try doing a search for United Cerebral Palsy. They have programs across the US and have never failed to point me or my friends in the right direction when we have had a question or problem with/because of our CP. They offer support for parents, and may be able to let you tour some of their local programs and/or meet some adults living with CP.

    I'm curious as to what the Dr thinks the MRI might show? They didn't have all that fancy pants stuff when I was born and basically told my mom "she has brain damage" and left it at that! Do they hope to rule out something?

    I'll be keeping my fingers crossed for you

     
    Old 07-03-2002, 09:25 PM   #5
    LilyBart
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    When my daughter was dx with mild CP at 24 mos, I was shocked. Denial is there for a reason though. I think father's have a longer period of denial, though than mothers.

    Early intervention services through my local regional center (we live in california) and through the school district can be very good. I feel lucky to be in the school district I am in and I have sometimes counseled people to move and change districts in order to obtain quality, free occupational, physical and speech therapy.

    MRI's, I learned after having put my daughter through two of them, are not definative. There are lots of children with CP whose MRIs appear perfectly normal.

    A good book that gave me a basic education, though was Cerebral Palsy: A Complete Guide for Caregiving.

    Another little thing that doctor's do not always mention, though, are the behavioral problems. Don't let them dx with ADHD. Some ataxic kids are in constant motion because they are trying to stay balanced.

    Also, I found it interesting that you mentioned the masterbation. My daughter does this a lot as well. One of her preschool found it bothersome enough that I discussed with her doctor who thought I was crazy for coming in with such a beign problem. Frankly, I think that she does it to wind down or when she is bored.

    Oh, also, make sure that your daughter see's a board certified pediatric neurologist and not just any neurologist. MRI's are only as good as the person interpreting the information. Also, I have seen too many doctors who really don't know themselves what is normal and abnormal range of development.

    Hope it helps!

     
    Old 09-20-2002, 04:25 AM   #6
    ts39
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    SHAMAN DOES YOUR TWIN HAVE CP? I HAVE TWINS 11 THEY HAVE NOT BEEN TESTED BUT BEEN TOLD IF NEED BE ITS A MILD FORM OF CP. THEY READ 1ST GRADE 2ND GRADE MATH. I HOMESCHOOL BECAUSE THE SCHOOL SAID THEY WILL NEVER GET ANYTHING BUT A SPECIAL DIPLOMA. I KNOW BETTER IF ANYBODY CAN GIVE ME HELP ON TEACHING OR SITES LET ME KNOW. I KNOW ITS IN THERE BUT DONT KNOW HOW TO GET IT OUT OF THEM. THE FIRST TWIN WAS BORN WITH IS CORD IN A KNOT BUT NOT TIGHT. WHEN THEY GO TO TALK THEY REPEAT THE FIRST WORD SEVERAL TIMES UNTIL THEY GET THEIR THOUGHTS TOGETHER. AND BREATH VERY HARD WHEN THEY TRY TO SAY A TALK. THE FIRST ONE IS WORSE THEN THE SECOND ONE THEY HAD ENCOPICES. STILL I DONT KNOW IF THIS IS WHAT THEY HAVE BUT ANY HELP WILL DO. WHO DO I GO TO.
    THANKS

     
    Old 09-21-2002, 07:55 PM   #7
    Shaman
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    tmdis39-

    No, my twin does not have CP.

    Your sign on does not specify where you are from so I don't know that I can help with specific referals, but you can try a couple of internet searches such as "Home schooling" or "Cerebral Palsy" to get more specific results you can add your location. I live in California so if I type in "Cerebral Palsy CA" I get results that are much more helpful because they are closer to me. Most states that allow home schooling have fairly active home schooling communities where people support each other and sometimes even "trade services" so that the kids can get exposure to more subjects.

    I encourage you to keep searching until you find the support you need.

    I'm sorry that I don't have any more "concrete" solutions for you but I was sent to public school and have very little experience with homeschooling or special education issues.

     
    Old 09-23-2002, 05:04 PM   #8
    tmm35
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    its scarry when your child is diagnosed with cp my son was sent through the system for 6 years and was just diagnosed in may and yes its scarry and frightenin and men do have a lot more denial than women my husbband does and its hard on him as well as me but you have to accept it am.nd move on and encourage your child to do things and treat them as you would a normal child yes timothy used to have the spells of keeping his legs crossed and twitching them but a lot of that is from muscle tightness where they grow and their muscles dont he still gets real pain cramps and spells of pain but the drs said he may also have md with this so its tough.he falls alot and gets tied easy.and i learned that cp can accur at anytime in a childs life from birth to 2 years old its main cause is lack of oxygen to the brain thats causes scarring on the brain and yes the cp and md website offer excellent info.ill talk later tmm35.
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