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Fibular Hemimelia

Deltadawn8Deltadawn8 member
in Special Needs

I was just curious if any other bumpies child has fibular hememila? if so - how old is your LO and what treatment was best for your child?  Where is your DR located?

My DD is 8w old and she will be having her first xray on Aug 2, and we will go from there.  She has FH of her left leg and was born with 4 toes on her left foot.  We are going to Shriner's childrens hospital in Oregon,

 

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Re: Fibular Hemimelia

  • ARJ11ARJ11
    Welcome! My DS doesn't have FH, but he was born with a couple of limb differences due to Amniotic Band Syndrome and is missing toes as well. We are currently undergoing treatment at a Shriner's near us, and he will be having surgery in 2 months. Shriner's has been amazing, and they have taken care of us every step of the way. If you have any questions for me, feel free to pm me and I can give you my contact info!
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  • MamminaMammina

    Hello! My 17 month old DS has a congenital short femur. Although it isn't the same as FH, I believe our children share similar medical decisions and options.

    We live in NYC, so we currently take DS to Hospital for Special Surgery and see a Ped Ortho surgeon who specializes in limb lenghthening.  We will take DS to RIAO in Maryland in October to seek out a second opinion and decide if we would prefer to have his surgery/ies done there in the future.

    While I don't remember the URL, there is a great blog written about a little guy with FH. She documents his medical journey and discusses where he is being treated. Do a search for, " no fibula, no problem" and FH ... That should locate the blog for you.

    Congrats on your little one and best wishes to you and your family.  

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  • Deltadawn8Deltadawn8 member
    imageMammina:

    Hello! My 17 month old DS has a congenital short femur. Although it isn't the same as FH, I believe our children share similar medical decisions and options.

    We live in NYC, so we currently take DS to Hospital for Special Surgery and see a Ped Ortho surgeon who specializes in limb lenghthening.  We will take DS to RIAO in Maryland in October to seek out a second opinion and decide if we would prefer to have his surgery/ies done there in the future.

    While I don't remember the URL, there is a great blog written about a little guy with FH. She documents his medical journey and discusses where he is being treated. Do a search for, " no fibula, no problem" and FH ... That should locate the blog for you.

    Congrats on your little one and best wishes to you and your family.  

    Thank you for refering the blog.  I was able to find it.  What an amazing little guy, and his mom is a world of kowledge for FH.  It's nice to know we are not in this alone and there are others to share our experiences with. I have heard great things about RIAO.  I wished we lived closer to see if they would be an option for us.  Unfortunatly we are clear across the country and finances don't allow us to travel that far.  We do have a fantastic Shriners here that we are very greatful for.Best wishes to you and your family too.

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