My 2 yo has scoliosis

[Jaredsmom]

There isn't a forum here for the young ones with scoliosis, so I'm starting a thread!

Ever since he was tiny he's always been "kinda crooked" so in the summer I took him to be checked. (i could feel that his spine was off centered) The Xray shows a curve of about 20 degrees (one doc said 16 other said 25). He also has 2 hemivertabrae. The orhtopedist ordered an ultrasound of his bladder and kidneys because scoliosis at this young of an age can affect them. Turns out he has an enlarged left kidney with hydronephrosis and thinning of the renal parenchyma. Meaning something is blocking the "tube" and the urine is backing up into his kidney. He's going for testing next month to find out what is causing the blockage.

So I guess I'm looking for others who have a young one with scoliosis. It's very uncommon, however the stats show that if a little one is going to develop scoliosis, the baby boys get it more often. It's also very hard to find info about it as well. If you have any sites that deal specifically with toddlers, I appreciate seeing them. thanks



Suzie

[Carmell]

Hi Suzie,

Welcome to the board. There aren't many places online or otherwise to give support and share experiences for families of infants and young children with scoliosis. I hope you find a few people here and there to help answer your questions. I'd be happy to share our experiences with you.

My son, Braydon, is now 8yrs old. He was born with "multiple hemivertebrae with contralateral failure of segmentation" which resulted in a severe scoliosis. At birth, his curve measured 50 degrees... by 9 months old, it was 75 degrees. At 11 months old he had fusion only surgery to stop the progression of the curve. At 6yrs old, he had surgery to cut apart the fused ribs (because of the severity of the scoliosis) and place two vertical, adjustable rods in his back to keep his spine stabilized and his chest expanded as much as possible. Today, he is doing GREAT! If you saw him on the street, you would have NO IDEA what he's been through and what his little insides look like. That's why I'm here... to help other families know they are not on this journey alone.

Braydon also has malformed kidneys. The spine and the kidneys develop during the same time in fetal growth - that's why when a doc discovers a malformation in the spine, the make sure the kidneys are healthy. Braydon also had kidney reflux in his left kidney, which was surgically corrected at 19 months old. Again, I'd be happy to share our experiences.

I'm assuming your little one will be having a VCUG and/or renal scans done. I have a few websites that are good to prepare for these tests... the VCUG is invasive (catheter, filling the bladder VERY full, series of xrays, voiding on the table, etc.). Let me know if you are interested.

My best to you! Please keep us posted.

[Jaredsmom]

Thanks Carmell.

He is going for the VCUG test on 12/12. And thankfully he will be sedated for the test. The doc wants to do another test, but he will order after we see the results from the VCUG.

It's very unsettling. Here I thought he was a normal healthy baby... He's just fine though. Acts like a normal crazy 2 yo. It really threw me for a loop though. I'm just thankful that I found it early. The docs never noticed it. He goes back in March to the ped orthopedist. We will see then if it's progressing at all.

I'd love any links you have ;-)

thanks again!

Suzie

[mpomeroy]

Maybe you could give us some more info

We noticed our son was kind of crooked too. We had xrays done and found one of his vertebrae was only partially formed causing a c shape (almost a greater than symbol shape) in his lower back. We are awaiting confirmation of the referral to a pediatric orthopedic doctor specializing in spinal disorders. We have his name but just not the referral yet, we're hoping to get it by tomorrow.

Are there any questions you recommend asking at the first appointment? Any advice you have about how it affects your son? I'd appreciate any advice or knowledge you have.

Thanks