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  1. #1
    3LittleMonkeys
    Guest

    Help with carseat for a child with Spina Bifida

    This is from a Mama on a Spina Bifida list we are on together. She has the following dilemna. Can someone offer her some suggestions?

    I do have her permission to post this.

    Thank you,

    Anne

    Hello all,
    >
    > My Son Phoenix 3mo. has a rare situation, he has myelomenigecele, but also
    > had a 67 degree angle curvature of the spine. He had a large opening
    > measurig know that it is closed 2.5in by 2.5 in,and at its highest point
    > extends 1.5 in off his back. His 1st surgery including a filing down of the
    > protruding bone and a beginning closure, his closure was 2 seperate
    > surgeries. He is not allowe/ able to beon his back directly because there is
    > a large risk of the bone causing skin breakdown. He is currently using a car
    > bed and is strapped in side lying. He is 13 lbs and 22 inches, shortly to
    > utgrow this option. We are in desperate need of finding a viable solution
    > for him being in a normal baby carrier. Physical therapists and Our
    > Neurosurgeoun have made recommendations but both caused issues with his back
    > or his breathing, he has Chiari as well. So we are back to the drawing
    > board, we have yet to find any type of pad that can be cut to fit the car
    > seat and have tried an at home creation that was not working. SO if anyone
    > on here has a child with a similar condition, please let us know what worked
    > for you.
    >
    > Thank you.
    > Megan
    >

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  3. #2
    CPST Instructor spokaneCPST's Avatar
    Join Date
    Sep 2006
    Location
    Spokane WA
    Posts
    959

    Re: Help with carseat for a child with Spina Bifida

    What carbed is he currently using - I assume a DreamRide? He has a few more inches and pounds to go (height limit 26" and weight limit 20 pounds) if that is his seat. I would keep him in that, as there are not many safe options for this little guy right now. Right now, there are only 2 carbeds being made for the US market and he has long outgrown the other one (Angel Ride). There is another carbed no longer in production that would be perfect for him, but most are expired, all are used, and finding them is extremely difficult (SnugSeat carbed).

    There is a rumor that a larger carbed is in the works and perhaps it will be out by the time he has fully outgrown the seat he is in. It sounds like it will be similar to the Snugseat carbed. Who knows though when or if it will make it to market - lets hope so!
    Renee
    CPST-I and Special Needs Trained
    Mom to 22yo seatbelt, 17yo seatbelt, 10yo Parkway, Harmony, or Big Kid, 10yo Parkway, Harmony, or Big Kid

  4. #3
    Moderator - CPS Technician safeinthecar's Avatar
    Join Date
    Oct 2002
    Location
    Bay Area California
    Posts
    6,605

    Re: Help with carseat for a child with Spina Bifida

    Does he have to be on his side or can he be on his belly?
    Kimberly
    Proud mommy of Becky 18! Danny 15 Hope 12~Auntie to William-14, David-10, and Logan 2~

  5. #4
    CPS Technician capeKO71's Avatar
    Join Date
    Aug 2006
    Posts
    719

    Re: Help with carseat for a child with Spina Bifida

    Quote Originally Posted by spokaneCPST View Post
    There is a rumor that a larger carbed is in the works and perhaps it will be out by the time he has fully outgrown the seat he is in. It sounds like it will be similar to the Snugseat carbed. Who knows though when or if it will make it to market - lets hope so!
    I'm in the special needs course right now... and they showed a power point of it... it goes up to 35lbs and 30"... but it's not in production yet and is still months off... I forget the name of it...

    Yeah - in the prone position, he's probably getting too close to the shell of the dreamride seat...

    I would suggest a few things... have them try to find a special needs tech near them. if they can't find one - they can call 1-800-755-0912 which is the "Safe Travel for All Children: Transporting Children with Special Health Care Needs," developed by the Automotive Safety Program with funding from the National Safety Council.

    If she can find a snug seat (no longer made - 2004 they stopped) it may give this baby a few more months until this new carbed comes out. A local tech might have access to one in a loaner program. It only goes up to 20lbs or so, but it is much longer and more box shaped... so it will last longer for a baby who must be on their tummy. If you contact the

    Last resort, they may have to call EZ On and see if they can adapt a modified EZ on harness for this child and simply lay the child in the harness on the back seat (in the middle) if they outgrow the current available seats and truly cannot be on their backs...

    they should do all of this with the consult of their PT and doctors...
    Kate - Mom to 2 boys! - CPST

    It's off! Yipee!

  6. #5
    Sherry Bryan
    Guest
    My grandson has a 4 by4 inch bubble on his back was born with it. As he grows it grows. Now a car seat with a ring foam is not working. He has surgery July 6th in St Louis but need a car seat or something to transport him there. We've lately been carrying him to close doctors appointments. It is an hour and half to St Louis an very dangerous to get him there with out help. He is a twin. Please can anyone help. John is 4 months old. 618-335-0271. buckhome64 AT gmail DOT com
    Last edited by Jeanum; 05-31-2018 at 10:44 AM. Reason: merging into single post from moderation queue

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