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Thread: 16 month old

  1. #1
    Join Date
    Nov 2003
    Location
    Ottawa, Ontario
    Posts
    3

    16 month old

    Hi. Im new here and its nice to know that Im not the only mom of a little one with scoliosis.
    My son was born with it and first put in a brace at 11 months. hes now 16 months and the curve has worsened to 51 degrees. He will be having an MRI and ultrasound on his heart and kidneys shortly. He also has a huge birthmark on his back, bum and leg that looks a lot like a port wine stain but they are trying to figure out if it is connected at all to his scoliosis. They are already talking about surgery. The surgeon said by the age of 4, he would probably have the operation if his curve doesnt improve. Im very scared.
    Has anyones baby had surgery yet? I have no idea what to expect.
    Hunter looks completely normal, he runs, jumps, stands up straight. You wouldnt know until he takes his shirt off and you see a huge hump on the left side of his back.
    Id love to talk to anyone who knows what its like to have a baby with scoliosis.

    Thanks so much.
    Stephanie

    mom of Hunter 16 months, congenital scoliosis

  2. #2
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122

    Re: 16 month old

    hi stephanie,

    it's great to come to these forums with questions. there are a lot of people who have great information and experience that your doctors don't always tell you OR you don't know to ask your doctors at the appts. i also have posted about my son lucas who is 2 yo. he had an mri, but it was specifically on his spine and brain to check for any abnormalities. will they also be doing an mri on those structures as well as the heart and kidneys? i know that a lot of kids who have congenital versus infantile scoliosis also have abnormalities of the heart and kidneys since they develop at the same time in utero. i'm just curious if they have mentioned the possibility that hunter might have a tethered spinal cord. my son did and it was found my mri. he did not have any external features that would indicate it, but it seems like hunter does (the birthmark). please make sure that your son is checked for a tethered spinal cord during the mri.

    i'm not sure how it's related, but my son was diagnosed in may 2003, got his tlso brace in july 2003 which he wore part-time (naps and nights) until oct 2003, spinal detethering surgery in sept 2003, the addition of a bending/charleston brace at night in oct. most recent x-ray without the brace, lucas now has a curve of 34/22 versus 68/34 in june. i'm sure it's the combination of brace wearing and detethering. it makes me wonder though if my husband and i hadn't gotten the surgery done relatively quickly (the docs were not adamant about getting it done right away), whether brace wearing alone would have corrected his curve so quickly.

    sorry for the long response. please let me know if you have anymore questions (that i can answer although i'm by no means an expert, just a parent trying to arm herself with information!)

    deshea
    north of boston, ma
    mom to lucas 2 yo on Sat otherwise happy and healthy child with scoliosis (was 68o and 34o in june and now 34o and 22o in nov)

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome to the board. I'm glad your son will be having tests done on his heart and kidneys - that's good. I agree with Deshea that your little one has a classic sign of a spinal cord problem (possibly a tether) and that needs attention before any surgery to stabilize the spine is done. Tethered cord issues have a direct link to how stable a curve in the spine is.

    Also, if they are recommending fusion by age 4, I would strongly consider getting a second opinion. Fusion, in most cases, should be avoided for infants, toddlers and young children. There are other options that may be recommended that would allow the spine optimal growth time and space, without fusion (best scenario if surgery is recommeneded). Are you seeing a pediatric ortho who specializes in spine malformations? I hope so.

    My son is now 8yrs old and was born with congenital scoliosis (50 degrees at birth). By age 9 months, it was 73 degrees. He had anterior/posterior fusion surgery at 11 months old. At age 6, he had Titanium Rib/VEPTR implant surgery. He is doing very well! He "looks" like a healthy 3rd grader who loves to run, ride his bike and play in the dirt. I'd be happy to share our experiences with you.

    Please 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/

  4. #4
    Join Date
    Jun 2004
    Location
    Nanaimo, BC, Canada
    Posts
    6

    baby with scoliosis

    Hi Stephanie;
    Before I joined this forum, I had never met anyone else whose baby was born with scoliosis, and therefore it has been a very long and lonely journey for my son and our family. With that said I would not wish this on anyone else, and my heart goes out to your family. How can you explain to a baby who is not aware of that there is anything wrong, who is not suffering any pain and who is living a perfectly normal life that he needs surgery? But kids are amazing. My son Danny adjusted incredible well to each procedure. My worst fear was that he would realize my deep pain for what he was going through, because kids will react on the parents reactions. I have posted my story in this forum under surgery (revision) "my son". As you can see, this has been a life long struggle for my son, and may not be encouraging to you. However, I know that things have changed a lot since Danny was a baby, and hopefully Hunter's life won't have to be as affected by his scoliosis. You mentioned the birth marks on Hunter. Danny had a few of the same kind, but I have never heard that they could have any connection with the scoliosis. Is that a new discovery? Please let me know. Hang in there. Hugs, Christina

  5. #5
    Join Date
    Nov 2003
    Location
    Ottawa, Ontario
    Posts
    3
    Hi Christina,

    Thanks so much for writing. Hunter will be 2 next month. His MRI is scheduled for August 19. He had xrays a few weeks back and his curve hasnt progressed but its still in the 50 degree range. So thats kind of good news.

    Im really interested in Hunter and your sons birthmarks. I wonder if it is connected in some way. Hunters have been checked out and they told me that it is called cutis marmorata hemangiectatica, or something like that. It is no big deal, just cosmetic they say, good thing its not on this face.

    Hunter doesnt realize yet that hes a little different. I havent had a chance to read your story but I will and Ill write more when I know a little about your son.

    Thanks so much for letting me know that Im not alone.

    Stephanie
    Stephanie

    mom of Hunter 16 months, congenital scoliosis

  6. #6
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28
    Stephanie,

    My daughter was also born with scoliosis. She started wearing a brace around 9 months. Her initial curve was a left thoracic curve of 54 degrees. She had a small birthmark on her back at the time. It seemed to catch everyone's attention. I cannot remember what they called it, but it has gotten smaller over time, and does not seem to be related. The did an MRI on her prior to prescribing the brace. She did not have an ultrasound of her kidneys until she was 3. All tests came back normal. She is now 6 years old. She continues to wear her brace and have x rays every 4 to 6 months. Her curve is 30s thoracic and 20s lumbar now. Good luck with everything.

    Ann

  7. #7
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20

    BRACING A BABY - WHEN TO DO IT

    Hello!

    Stephanie and Ann,

    Can you tell me what factors led to the decision on WHEN to brace your children? My second son William is going to be braced as a baby, because his brother Malcolm wasn't and his curve got to ninety degrees after he started walking. The brace corrected him to about 60.

    So I'm going to have to decide when to brace William. I don't want to do it any earlier than I have to because I want him to develop normally as much as possible.

    Thanks for any ideas
    Surattius
    Mum to two boys with scoliosis

  8. #8
    Join Date
    Jan 2005
    Location
    brooklyn ny
    Posts
    43
    hi everyone our names are gregg and cindy our daughter Ariana has congenital kyphosis and was diagnosed at 4 months. By 12 months her curve was progressing at a rate of 5 degrees every 6-8 weeks. It was deceided that ariana would have posterior spinal fusion T12-l2 (Where her hemi-verterbrae is loacated) at 12 months to stop the progression of the curve. Her curve was approx 51 degrees when she had surgery it was corrected to 17 degrees. Dont let anyone tell you that surgery is the cure-all. Ariana's surgery has failed, her fusion didn't fuse!!! Now my daughter is 20 months and she will need surgery in 2 months, her second major surgery before she is 2. This time we are going a little slower. We are getting second,third,fourth opinions!!! It may sound crazy but not one of the doctors we have seen have agreed on anything!!! they all disagree and that makes our lives more difficult we have seen Dr errico at nyu Dr van bosse at hospital for joint dieases(those two did the first surgery) Dr flynn at childrens hospital of philly Dr polly of twin city spinal center in minneapolis..... we are very frustrated be careful before you ump into surgery regardless what anyone tells you... My daughter now has a broken wire in her spine that could be doing more harm!!!

  9. #9
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20
    Hi Gregg and Cindy,
    Thanks for sharing your experience with us. It is very hard to know what to do and when.
    It sounds like you are visiting some good centers in the US. You definitely want a doctor who specializes in spine surgery, and maybe even congenital scoliosis treatment knowledge and experience.

    It is true that doctors have different ideas about what do do. It seems to be a lot for us parents to pick among the different options knowing that it will affect our children forever.

    Do as much research as you can. Be comforted by the fact that treatments are so much better for scoliosis than they were even ten years ago.

    Hang in there.
    Surattius
    Mum to two boys with scoliosis

  10. #10
    Join Date
    Feb 2005
    Location
    alabama
    Posts
    1

    a child care giver needs advice

    I am very excited that our preschool is getting a new child. She has congenital scoliosis, a condition of which I know very little. I have been reading some of your mail, but I haven't come across anything that a caregiver might need to know in order to provide the best possible environment for a child with scoliosis. The little girl is quite adorable and is walking, etc. She is almost 2 years old and is very petite, almost fragile looking. My concern if her safety. Her mother said that the main concern is if she were to fall and the damage to her neck. Well, you know that toddlers are often falling down and occasionally one will push the other over a toy dispute! Do I need to worry about these little incidences, or is it more to worry about a fall from the playground equiptment? Obviously we take precautions to provide safe environments for all of our children, but can you parents of children with scoliosis suggest anything in addition to what is the norm. Thanks for your advice, but hurry, she is coming tomorrow!

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Cathy,

    You are a very kind and caring caregiver to be concerned enough to research the needs of a child coming to your place. You should be commended for being so vigilant in seeking information! Good for you, and I know the parent(s) of this little girl will be very grateful too.

    Yes, this little girl will need to be a little more careful about falling and anything that would potentially jar her spine. Do you know if she's already had a spine surgery? If she has, then she will need to be EXTRA careful, because her spine has been compromised in strength because of the surgery. I'm assuming she HAS NOT had surgery. If she has not had surgery, then she should be fine.

    My son was born with severe congenital scoliosis. He had fusion only surgery at 11 months old. He was in a private daycare from age 2 to age 5 (when he started public school). His daycare provider was very in-tune to his needs and his whereabouts. I appreciated her concerns and her second set of eyes... if Braydon was just not 100%, we would talk about things, and she was able to help me figure out if he needed to see a doctor or if things were just not quite right. I believe you will be able to help the parent(s) make sure she stays as healthy as possible. That is very important.

    Braydon is also very small in size, but proportionately so. They do appear fragile looking, but they are more sturdy than they seem. Depending on her personality, she will be able to help you take care of her best. What I mean is, if she's a cautious child to begin with, she will be able to tell or show you if there is a problem. And, if she does fall or get pushed, don't rush to pick her up. Braydon has learned to listen to his body and he will let me/us know if we can pick him up or move him at all. For example, he fell out of the swing once and landed flat on his back (yes, very scary). It sort of knocked the wind out of him, but we just let him lay there and reassured him that we were right there... once he was able to compose himself, he was able to be helped up. Had we rushed to pick him up, I think he would have been hurt more (maybe even emotionally). I know this doesn't make a lot of sense, but maybe something will trigger ideas for you.

    Do you know if the congenital malformation is in her neck area? Since you mentioned potentially harming her neck, I'm assuming the parent(s) told you that her neck is the part to be careful with. Regardless of where the congenital malformation is/are, she just needs to be a little more cautious than most kids, unless there is medical reason to be more protective.

    Many toddlers with congenital scoliosis like to hang on things... a PT once told me that their bodies are out of balance, and by hanging, they actually feel relief and some sense of balance on their trunk. Braydon LOVED to hang on whatever he could find... the kitchen table, the bunkbeds, anything. My dad made him his own monkey bar set that was very close to the ground, yet tall enough he could hang. He loved it! Gave a new meaning to the words "hanging around". Hanging and stretching are great exercises for anyone with scoliosis, especially little ones. I can also send a few other exercises that the PT told me about for strengthening the weak side of her body. Only if the doc says its okay and if you are interested.

    Mostly, she should be a normal, active toddler and will likely have lots of love to give.
    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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