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Thread: New here

  1. #1
    Join Date
    Jun 2007
    Posts
    16

    New here

    My son, Jackson, is 10 months old and was diagnosed with a 70 degree spinal curve (thoracic) just two weeks ago today.

    They're calling it congenital infantile scoliosis, but the MRI last week came back clean. (many, many answered prayers)

    Today we pick up his semi-rigid brace and have him casted for positional plagiocephaly (he pulls to the left from the scoliosis and that side of his head has flattened causing some facial asymmetry).

    Our doctor is the world-reknowned Dr. Lenke in St. Louis, so we know we're in good hands. I guess I just needed to know that others were out there going through this. We're facing surgery, but we don't know when. I'm secretly wishing that the brace somehow "cures" him and we won't need to deal with surgical growing rods. I'm anxious to hear what Dr. Lenke says on the 3rd. I'm sure if he does recommend surgery, we'll be here with lots of questions.
    Sandi (& Jack)

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,757
    Hi Sandi,

    Welcome. You will find lots of support here. Sometimes I think we keep each other sane

    Yes, I have heard very good things about Dr. Lenke. I believe he was (or still is?) with Shriners Hospital for Children, St. Louis.

    You say they have termed the scoliosis "congenital" but that, happily, the MRI came back clean. Is there any chance it is not congenital? I have heard of kids quite young with large curves that are not always congenital - perhaps casting can help if that's an option.

    In any event, best of luck and please keep us posted. Also, feel free to ask any questions. We'll try to answer them as best we can. There is a lot of knowledge and experience on this forum and, as I always like to say, we're all in this together!
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Sandi - big hugs to you.

    I know this is hard news to hear about your little one. Like Maria said, you are in good company. There are lots of families here who have walked in similar shoes.

    I, too, wonder about the "diagnosis" you were given. Congenital typically means there is at least one bone malformation that is causing/contributing to the curve of the spine. However, they may be referring to congenital as being "from birth". Not the typical use of the term in scoliosis talk. The MRI will show the soft tissue - I'm happy to hear there are no spinal cord abnormalities.

    If you haven't already, I suggest you check out the Yahoo group for Infantile Scoliosis. You can find it here: http://health.groups.yahoo.com/group...ile_scoliosis/

    and also this website: http://www.infantilescoliosis.org/

    If Jackson has congenital malformation(s) in the vertebrae, then these websites won't be as useful, but it sounds like his is idiopathic (meaning no bone malformations).

    Good luck.
    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 2007
    Posts
    16
    Quote Originally Posted by mariaf
    Yes, I have heard very good things about Dr. Lenke. I believe he was (or still is?) with Shriners Hospital for Children, St. Louis.
    Yes - we first got in touch with him through Children's, but he has requested that we transfer his care over to Shriner's because "it's easier to schedule at Shriner's" - which is nice.

    You say they have termed the scoliosis "congenital" but that, happily, the MRI came back clean. Is there any chance it is not congenital? I have heard of kids quite young with large curves that are not always congenital - perhaps casting can help if that's an option.
    Definitely all questions we have asked and will ask. We had a very hard day yesterday with his head casting (for positional plagiocephaly from his curve) so I'm trying to stay positive and think that the brace will work. Seeing how traumatic something as small as just a head casting is makes me terrified for him, should surgery be required. We did ask if it was idiopathic, based on the fact that he has no other malformations or issues. They said that based on his age it's congenital - but I'm really pressing to see WHY, and I want to try whatever we can that's non-surgical first.

  5. #5
    Join Date
    Jun 2007
    Posts
    16
    Quote Originally Posted by Carmell
    I, too, wonder about the "diagnosis" you were given. Congenital typically means there is at least one bone malformation that is causing/contributing to the curve of the spine. However, they may be referring to congenital as being "from birth". Not the typical use of the term in scoliosis talk. The MRI will show the soft tissue - I'm happy to hear there are no spinal cord abnormalities.
    I agree - that's the questions we had. We had read about both forms, extensively, and when his MRI came back clean we thought/hoped perhaps it was idio. So, we'll see. I definitely want to press the surgeon to know for sure.

    If you haven't already, I suggest you check out the Yahoo group for Infantile Scoliosis. You can find it here: http://health.groups.yahoo.com/group...ile_scoliosis/

    and also this website: http://www.infantilescoliosis.org/
    I tried to join the yahoogroup two weeks ago and my membership is still pending (it also took two weeks to get approved to post here ) I guess people are busy

    If Jackson has congenital malformation(s) in the vertebrae, then these websites won't be as useful, but it sounds like his is idiopathic (meaning no bone malformations).
    I'm really, really hoping it IS idopathic. Today is his first day in the brace all day. I keep thinking that we'll see good results, just seeing how differently he moves in this.

    Thank you both for the warm welcomes

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    HI again,

    Did you get a response to the infantile_scoliosis list yet? Let me know and I will check on it for you. I have Heather's phone number...
    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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