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  • boy from China

    Hello all,
    I would like to find out more informations for a young boy age 3/4 year of age, has 60% of curvature of the spine, anyone out there have experience with this type of problem?

    What's it like to take care of such a youngster? How this boy codes with school ? What kind of social problem he will face? His limp will ever disapear when his spine gets fix?

    Asianpear

  • #2
    Hi Asianpear,

    I think I responded to another post you made on another site. I hope I don't repeat myself...

    A child as young as he is, with a 60-ish degree curve, can function very well, if he has the right medical treatment. You will need to find out the details of his entire medical history, not just generic information before you can determine what medical care he may need.

    My son was born with multiple orthopedic issues, but if you saw him, you would never believe what he's been through. He has no physical restrictions, no visible problems, other than being proportionately small. I can see his rib hump on his back and a few other things, but they are subtle.

    Do plenty of research and talk to as many parents as you can. Getting as much information from experiences of other parents will give you some peace of mind. I think your heart will tell you what choices you need to make. Good luck and let us know how things go.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      Hi Carmell,
      Thanks for your kind support. This is our first time to try to adopt, and we are concerned about the future of life for this boy.
      After meeting with our orthopedics. He said the boy MRI was good, only some fatty tissue press on his spinal code, that need to remove to lease the pressure on the nurve. The doc does not sure whether he is urinary incontinence due to the nervous disorders.
      Any of your kid has some problem with this issue?

      asianpear

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      • #4
        Hi Asianpear,

        My son had this very thing! A fatty filum that was causing the spinal cord to be tethered. The surgery to release the filum/tethered cord is very basic and straightforward, neurosurgically speaking. Braydon's release surgery was one of his smoothest recoveries. The benefits his little body received from this release surgery were amazing. He had his release just before his 4th birthday. Within 6 weeks after his surgery, he gained 3 pounds and grew 3 inches tall! His energy level was improved dramatically and he began acting more like a pre-schooler than ever before.

        The paperwork and scans they have of the little boy will not tell them for sure if his bladder continence will be an issue. For Braydon, his spine structure was not correct (he's missing the coccyx part of the tailbone where all the nerves are located that give you the sensation to use the bathroom). But, his body compensated for that and grew somewhere else. He is fully bowel and bladder continent!

        My point is that until you see this little one and have him evaluated from head to toe (did I remember to mention that he needs a renal (kidney) evaluation, if he hasn't already?) you won't be able to determine the severity or lack of severity of his issues. He will bring much joy and light to your life - that much I'll guarantee. I wish you the best and look forward to hearing what you decide to do. Keep us posted!
        Carmell
        mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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        • #5
          Hi Carmell again,
          Thanks for your supportive words. Glad to know the success experience on the release surgery for your boy.

          We just hope for the best, by not knowing is the biggest worries. There is no more test to be done until we agree to adopt him, He was only 22 pounds and 2 ft' tall when he was 2 and half year of age, he will be 4 when he comes to the State.
          A renal(kidney) evaluation will not be possible right now. The agency was able to get a MRI for us is very lucky.

          How old is your Braydon now?He is still small for his age? How he is doing in his daily life? Does his weight and height improve further? How hard for you to code with his problem? Any advise for me as a mother?
          Can I talk to you on the phone. You are the only parent we can contact. Any information is very important and gratful to us. Thanks again.

          Asianpear

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          • #6
            Hi Asianpear...

            I know very well what you mean when you say the worries come from the unknow. That "fear of the unknown" is the hardest to emotionally deal with. But, by researching and talking with other families, you will have a little better understanding about what to expect.

            Yes, Braydon is small for his age. When he had major surgery to implant 2 vertical rods in his chest/back, he was 6 years old. He weighed 32 pounds and was 36 inches tall. Today he is almost 9 (will be 9 on May 31) and weighs 45 pounds and is 47 inches tall. He's doing great! He is not academically delayed at all. If you saw him on the street, you would have no idea what he's been through - he LOOKS great!

            I'd be happy to talk with you on the phone. Email me at boulderfam@hotmail.com and I'll send you my phone number.

            You can also see what Braydon looks like and a brief overview of his medical history on a website I put together. http://pages.ivillage.com/carmellb/myfamily

            Braydon loves to ride his bike, play in the dirt and do everything a normal 8yr old loves to do. I think the way I've coped with his medical stuff has been by talking with other families who have similar situations. It also helps a lot to have two other children who have homework, dance lessons, soccer practice, etc. to deal with. Having Braydon in our home hasn't changed any of that - we still have to move on with life as usual. I think that has helped Braydon see that he can be just as active as anyone else.

            I look forward to hearing from you!
            Carmell
            mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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