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Spastic Diplegia

The casts have been made to make Charlie's AFOs. Hopefully, they will help her to walk. The good news is that her cognitive skills and social skills have been evaluated at her actual age. Unfortunately, her motor skills and speech skills (including feeding) are at nine months.

She has been diagnosed with spastic diplegia (a type of CP) due to possible PVL. She is still to young to do a head scan to confirm the PVL suspicions. Has anyone else's baby been diagnosed with spastic diplegia? If so, what have you learned that you can pass on to me?


Thanks!

Rebecca

CharlieAllene's mom

6 Replies

  • Madisons mom

    Hi Rebecca

    my daughter also has spastic diplegia. We werere told when she was 11 months old that she would never walk and should just go ahead now with the putting pins in her hips. I disagreed and thought lets hive her a chance to st least try. With countless therapy and intense daily yoga routines she is now 8 years old and running.  She has a ton of friends and never lets her disability get in her way. Hang in there. I know watching your baby struggle is beyond tough and the thoughts of what her future may look like can be consuming but as a mom who's a few years ahead I just wanted to let you know it does get easier and her life can still be awesome ♥

    Xoxo

    Jessica

  • Hunter and Randi's Mom

    In reply to CharlieAllene's mom:

    Hooray for Charie's first steps!  Go Charlie!

  • CharlieAllene's mom

    In reply to lvazquez:

    Wanted to let you know that Charlie took her first steps last week... spastic diplegia be damned!

    Rebecca

  • tucker'smom

    In reply to lvazquez:

    Hi Rebecca,

    I am sorry that Charlie has a new diagnosis to research and consider, and I don't know much about spastic diplegia. Has your support coordinator with Early Intervention or the PT told you anything about it?

    That is great that her social and cognitive skills are at age level, you must be so proud! :)

    Please keep us updated with her progress.

    Leigh

  • Jami H

    In reply to lvazquez:

    Rebecca,

    I really wish that I could offer you more advice on this subject but all I can really offer you is support. After Lexi was born we were faced with doctors discussing a possible PVL due to the lack of oxygen she received before she was born. She had really low muscle tone and poor feeding (this delayed her coming home from the NICU when she "should have"). Luckily this was not the case. We were also told that she would more than likely have CP but she does not. She did walk very late in addition to many of her other motor skills. Like Charlie though socially and cognitively she was on point for  her actual age from about 9 months on. Speech was also an issue. I hope that you get some answers soon. Great job getting your little sweetheart all of the needed therapies so early on. No doubt it will make all the difference in the world for her later on.

    Hugs,

    Jami

  • lvazquez

    Rebecca, I'm glad to hear that her AFOs are ready. You've got to be beaming that her cognitive and social skills are at age level. I am sorry for this newer diagnosis, but ongoing ST, feeding, OT, and PT will help her here and you will see and hear improvement. Get every service you can for her. I hope that you have a wonderful Support Coordinator.

    Hugs,

    Lindsay

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