Results 1 to 13 of 13

Thread: new here with recently diagnosed toddler

  1. #1
    Join Date
    Mar 2012
    Location
    NC, USA
    Posts
    155

    Default new here with recently diagnosed toddler

    hi all! my name is andi and my daughter was diagnosed with congenital scoliosis in october. we had xrays and went to the orthopaedic surgeon in our network and it was terrible!!!! he basically said to bring her back in a year. he didn't even go over her xrays with us, just basically read the radiology report to us, scheduled a renal ultrasound and sent us on our way. the xrays showed a hemi at t5, a hemi at t9, fused ribs at t4/t5, missing rib at t9, 30degree curve between t4 and t11 and a compensatory curve below all of that. renal ultrasound came back okay.

    naturally, i was not okay with this so i rode out the holidays, did some research and bummed around support threads (thank you for being here!!!). in february i made an appointment for Odella to have a second opinion. that was yesterday and it was so much better than the first appointment!

    we did new xrays with her standing--her curve is now 38.3degrees. her new doctor wants an mri and ekg and believes that surgery is the only way to correct the problem. he wants t9 out first as it is causing the most trouble and then he thinks the fused ribs need to be unfused because they will act like a tether inhibiting growth. t5 he is undecided on, it is small but will likely need to come out too. this is still a bit of a waiting game too because she is too small to receive the implants still.

    anyways, that is where we are now. it is scary and overwhelming and i would love comments, suggestions, support or whatever!

    thanks again for being here!
    andi

  2. #2
    Join Date
    Mar 2012
    Location
    NC, USA
    Posts
    155

    Default Re: new here with recently diagnosed toddler

    i think i added her first xrays to my signature. the second ones i don't have copies of yet.

    Andi S

  3. #3
    Join Date
    Jan 1970
    Location
    Edmond,OK USA
    Posts
    6,567

    Default Re: new here with recently diagnosed toddler

    Welcome to our world at SSO. Try to keep in mind that it isn't anything new. I am glad you found a doctor that is a lot interested in your child! Things to help you: lots of reading and write down questions you may have. Try to take someone else with you to appointments to help take it all in. Stock up on bubble bath and adult beverages to relax when you can! Sending hugs your way!
    I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.

  4. #4
    Join Date
    Jan 1970
    Location
    Sheffield, UK
    Posts
    16,238

    Default Re: new here with recently diagnosed toddler

    Poor little love, that's a lot she has going on there I'm so glad you managed to finally get seen by someone who actually gives a damn! We are all here to help and support you along the way, I'm glad you've joined us
    Me, a Mod? Nah ... I'll always be a rocker

  5. #5
    Join Date
    Nov 2011
    Location
    Hertfordshire
    Posts
    6,049

    Default Re: new here with recently diagnosed toddler

    Wow, she's a brave young lady and you sound like a very strong and determined mother.

    Wishing you all the best x
    I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).

  6. #6
    Join Date
    Mar 2012
    Location
    NC, USA
    Posts
    155

    Default Re: new here with recently diagnosed toddler

    thank you thank you for your replies! it is nice to go somewhere where other people are going through similar things!

    i added O's xray from monday as my avatar! it is a mirror of the first ones because it was taken standing instead of lying down, but you can see the difference--30 to 38.3 degrees.

    Andi S

  7. #7
    Join Date
    Mar 2012
    Location
    NC, USA
    Posts
    155

    Default Re: new here with recently diagnosed toddler

    we got a call from Dr. Lark yesterday. he had a round table discussion with his colleagues about Odella and they came up with a plan of action. they feel that surgery is about a year out because she is so small and they need the implant to not be too big. so what they want to do is excise t9 and put in an implant and then for t4/t5 they want to fuse the spine instead of excising the hemi and unfusing the ribs. i'm not sure what the pro's and con's are between fusing the spine and excising the hemi. i have a bunch of questions but am glad there is a plan and a time frame. we should have an appointment set today for her mri too and then we will meet again with Dr. Lark after that.

    all day yesterday she carried around a copy of her last xray and kept pointing to her back. she loves to look at it! she's a silly lil' bit!

    Andi S

  8. #8
    Join Date
    Jan 1970
    Location
    Sheffield, UK
    Posts
    16,238

    Default Re: new here with recently diagnosed toddler

    Oh bless her, she sounds adorable, give her a little hug from me It's good to have a time frame, something to work to at last. Please keep us updated with her progress
    Me, a Mod? Nah ... I'll always be a rocker

  9. #9
    Join Date
    Jan 1970
    Location
    London, UK
    Posts
    2,773

    Default Re: new here with recently diagnosed toddler

    Hi Andi and welcome to SSo (I was an Andie at university, but used my "Sunday" name when i left ). I'm sorry to hear about your daughter. What a brave little lady she must be. Unfortunately I don't know anything about congenital scoliosis, other than it seems to behave differently in all the cases I have come across, but wanted to say we're all here for you.

    Please let us know how she gets on
    Andrea xx
    Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.

  10. #10
    Join Date
    Jun 2009
    Posts
    939

    Default Re: new here with recently diagnosed toddler

    HI Andi, so sorry to hear about your daughter, how old is she? She does sound like the cutest lil thing . I so feel for you and your daughter, you have a road ahead of you . Thankfully you seem to have found a good Dr that means a lot, and they have a plan in hand , Great. Again I don't know alot about congenital scoliosis, but I am sure there a lots of others on this site who will be able to advise you and help you with lots of information. Finding this site was one of the best, comforting things for me, your so not alone when your on this site. There all so good and understanding and will always be there to listen to you, so you have made a really good move.

    I wish you and your cute little daughter all the very best.

    Lots of good wishes

    xxxx


    Sandra mother to Karen diagnosed with scoliosis at 8 yrs first Spinal Fusion Dec '09 12 yrs, Jun '11 section of rod detached from spine, had to be removed. April '12 had surgery to remove all metal work from her spine due to constant back pain Jan 13 Costoplasty to remove some prominent rib hump.

  11. #11
    Join Date
    Mar 2012
    Location
    NC, USA
    Posts
    155

    Default Re: new here with recently diagnosed toddler

    thank you all for the kind words!

    Odella will be 2 on may 2nd. it's going too fast, soon she'll be 18 and i'll have a hard time letting go...

    so we have her mri schedule for may 31. i'm dreading putting her under but i know they have to or she won't be still. i am glad to have it done though.

    Andi S

  12. #12
    Join Date
    Mar 2012
    Location
    Georgia, USA
    Posts
    295

    Default Re: new here with recently diagnosed toddler

    Best Wishes!
    Diagnosed with a 75 degree Scheuermann's kyphosis curve in 2010. After numerous doctor visits and a few years later, my curve had developed into one measuring 95 degrees. I had my spinal fusion done June 21, 2012 at the Children's Hospital of Georgia by Norman Chutkan in Augusta, GA.I'm now fused from T5 to L3.
    Follow me on twitter... @JustBeing_Jenny

  13. #13
    Join Date
    Jun 2009
    Posts
    939

    Default Re: new here with recently diagnosed toddler

    Quote Originally Posted by Andis View Post
    thank you all for the kind words!

    Odella will be 2 on may 2nd. it's going too fast, soon she'll be 18 and i'll have a hard time letting go...

    so we have her mri schedule for may 31. i'm dreading putting her under but i know they have to or she won't be still. i am glad to have it done though.
    I understand, my eldest Laura is coming up to 19 in April, Karen will be 15 in April, oh believe me when they tell you the Best Yrs are the Baby yrs they are not wrong, at least at night you know where they are safely tucked up in bed, since laura turned 18 and thinks she can stay out and come and go, Oh My god, I just don't sleep, text her constantly, and yes the years FLY in I just can't believe my girls getting so much older, so treasure Odella, they are really the best years

    I will be thinking of you for Odella's Mri, I know it seems scary but it isn't really she will be fine, and you will be so glad to have over. I have had it done myself and its not easy to stay in the one position, so if they can relax Odella so much better for her, she will be fine, a right little trooper she will be......

    take care and best wishes to you both, I really hope all goes well......

    Look after you too try have your little breaks with your good friends to recharge your batteries every now & then

    xxxx


    Sandra mother to Karen diagnosed with scoliosis at 8 yrs first Spinal Fusion Dec '09 12 yrs, Jun '11 section of rod detached from spine, had to be removed. April '12 had surgery to remove all metal work from her spine due to constant back pain Jan 13 Costoplasty to remove some prominent rib hump.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •