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Thread: New Here with Recently Diagnosed Toddler

  1. #1
    Join Date
    Feb 2012
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    New Here with Recently Diagnosed Toddler

    Hi all!!! My name is Andi and my 22 month old daughter, Odella, was diagnosed with congenital scoliosis in October. We were at her peds for her 18month well baby visit and I asked him to take a look at her back because I thought her spine looked curved. He agreed and sent us for xrays. The xrays came back showing a hemivertibrae at t5 and one at t9 (both in the same direction). She has ribs fused at t4-t5 and is missing a rib at t9. Her curve was measured at 30 degrees (left thoracic) from the superior endplate of t4 to the inferior endplate of t11. She also has a minimal right compensatory lumbar curve.

    So hearing all of that freaked me out! We then had an appointment with an orthopeadic surgeon in November. He was awful (in my humble opinion). I am of the opinion that while you may be physically treating the child, you must also treat the parents, especially when the patient is so young and this man did nothing to make me at ease or feel okay about the situation. He basically told us to come back in one year. I then suggested that if I saw any change or felt something was different that I would make an appointment sooner and he said "no". He did send Odella for a renal ultrasound though and it was fairly benign with no real issues (unless debris in the bladder of an 18 month old is a problem--which I was told was not). They did no checks of her heart, he said that if her ped didn't hear anything on any of her check-ups, it wasn't necessary.

    I was left very unsatisfied with all of this so I am getting her a second opinion. We go on Monday to a new doctor.

    I am here to get any thoughts and opinions from those of you with any experience at all.

    Thanks!
    Andi

  2. #2
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    Feb 2012
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    xray

    Here is her xray
    Attached Images Attached Images

  3. #3
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    go to Shriner's Hospital

    Hi Andi,

    I am really sorry to hear about your daughter's diagnosis--I am sure this is quite a shock and you must have a lot of questions. I think it is terrible how you were treated by the first specialist, and you deserve better. I don't know where you live, but I would strongly suggest you apply to be seen at Shriner's Hospital. Shriner's is a network of about 18 specialty orthopedic hospitals that provide cutting edge treatment free of charge to all children, regardless of ability to pay or insurance status. The only criteria is that the child has a condition that will benefit from specialized orthopedic care, and scoliosis is on the list of those conditions. You do not need to be sponsored by a Shrine Temple or know anyone who is a Shriner.

    Shriner's Philadelphia and Shriner's St Louis have particular expertise with treating young children with scoliosis, but there are other hospitals ll over the country. You can find a list of hospital locations at the following link: http://www.shrinershospitalsforchildren.org/ . You can print out the simple application there, also.

    If your daughter was my child I would push the pediatrician for an echocardiogram of her heart as well. You may have to politely insist, but it is your right to do so.

    Best of luck, and please do let us know how things are going for you and your daughter.
    Last edited by leahdragonfly; 03-01-2012 at 10:10 AM.
    Gayle, age 46
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,248
    Hi Andi...

    Where are you located?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  5. #5
    Join Date
    Feb 2012
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    Gayle--Thank you. I have been thinking about Shriners as I have seen so many positive stories about them. We will see how Monday goes and go from there. I think one of my first questions to this new doc that we are seeing will be how many patients with hemi's has he seen since it seems to be sort of rare.

    Linda--We are in the triangle area of North Carolina.


    Andi

  6. #6
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    Aug 2004
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    ny
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    Post

    Hi Andi,

    First of all, please know I am sending you a big cyber hug!

    My own son was diagnosed very young and to this day I wish I had found Shriners sooner!!! I cannot reiterate strongly enough what Gayle said. There is a HUGE difference between a doctor who specializes in scoliosis - and a doctor who specializes in INFANTILE AND JUVENILE scoliosis. At Shriners in Philadelphia, where my son goes and which is probably the closest to you, they have an entire team, led by Dr. Betz (one of the best in the country, perhaps the world), who sees tons of very young children with scoliosis. Patients are referred there from all around the country, including some of the more challenging cases to treat. We live in NYC and are fortunate enough to have medical insurance, but even though the so-called 'top doctors' are supposed to be in places like NY, for treatment of scoliosis in a young child, Shriners is the place to go.

    Please look at my signature for a little more info on my son and also for the contact information for Shriners in Philadelphia. The contact person - Janet Cerrone, the PA to the entire spine team there, knows more about scoliosis than some doctors and is extremely nice and easy to deal with. Parents love her - and I can personally guarantee you that in addition to treating the child/patient, they treat the entire family - in fact that is their philosophy 'family centered care'. A phone call or e-mail to Janet, if you decide to go this route, will save time and start the ball rolling even before you submit the application.

    Sorry if I sound like a walking ad for them but my son has benefitted from almost 8 years of the very best care from them, which amazingly has not cost us a penny.

    Please feel free to e-mail me if you like (e-mail address is also in my signature).

    Best of luck to you and please keep us posted.
    Last edited by mariaf; 03-02-2012 at 08:02 AM.
    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

  7. #7
    Join Date
    Feb 2012
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    11
    first off -- thank you Maria! i appreciated yours and everyone else's comments!

    we had Odella's second opinion today and it went so much better than her first appointment! Dr. Lark had new xrays done, standing this time and she is measuring at 38.3degrees now. i don't have them on my computer yet but i will post them when i do. he is scheduling an mri for her and wants us to get her primary ped to go ahead and schedule and ekg. he confirmed our thoughts that surgery is the only way to correct the problem. t9 has to come out. the fused ribs at t4/t5 need to be unfused. unfortunately she is still just too small. they usually do the surgery right around 2yrs old, but she is not the size of an average 2yr old, she is barely 20lbs. Dr. Lark assured us that Duke can take care of her. he said we were, of course, welcome to get another opinion and if we wanted to, he recommended CHOP or Shriner's Philly. he is supposed to call me thursday or friday. so i guess our next step is to see what the mri shows and then go from there.

    i feel so much more hopeful...
    thanks again for your thoughts and support! i welcome any comments!

    andi

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
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    Hi Andi,

    I am so glad to hear that the second opinion went well. I swear some doctors should not be working with children!

    Keep us posted on how things are going, and good luck with the MRI.

    Take care,
    Gayle, age 46
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Hi Andi,

    Wow, what a difference a second appoinment makes :-)

    I'm glad to hear you sounding more relieved and hopeful, as you should be.

    I don't know that much about it, but I would get several opinions (only because they can't hurt) when considering surgery for a child so young. I'm not saying that Dr. Lark's plan isn't the way to go, but I have learned that sometimes (as is the case at Shriners in Philly) there are options available in some places that aren't or can't be offered elsewhere. Not to overload you, but I just want to point out that because of the way Shriners operates, they are often able to pioneer treatments first.

    In any event, you are doing all the right things and sound like you are wll on your way to getting your child the best care possible.

    Please free free to ask any questions or e-mail me if you prefer.

    Best of luck!
    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

  10. #10
    Join Date
    Feb 2012
    Posts
    11
    thank you again Gayle and Maria!

    here is her newest xray
    Attached Images Attached Images

  11. #11
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    Jan 2008
    Location
    NC
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    8,091
    Hi.

    It may or may not be helpful to ask these surgeons at Duke and elsewhere how many cases they have done that are similar to that of your daughter's. It might be that Shriners has simply done way more and that might matter. Congenital scoliosis is relatively rare and there are probably not a bunch of guys who have done a bunch of cases out there. You need someone who has done as many as possible.

    Also, there may be various approaches to dealing with this in terms of timing and actual surgery and other things. You may want to be asking each of these surgeons if there are various approaches and what the pros and cons are of each. Then you will know how they are making their decisions. Sometimes there is more than one good way to proceed but you want the best way that is not dependent on surgeon experience with one way.

    I would ask specifically if any of the non-fusion surgeries (VBS, tethering, VEPTR, Shilla, growth rods, etc.) have a track record for congenital scoliosis. Shriners would probably know the answer to that.

    Maybe you have asked these questions. I am throwing them out as things I would ask and hoping it helps.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Aug 2004
    Location
    ny
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    Great points, Sharon - especially touching on how vastly different the approach to a particular case may be, even among good surgeons. Unfortunately (and I am not saying this is the case at Duke as I do not know), some hospitals are very good for treating the more typical scoliosis cases, but fall short when it comes to the less common (infantile, congenital, etc.) and more challenging cases, in part because - as you said - they just don't see enough of them to develop an expertise.
    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

  13. #13
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Andi,

    Best Wishes to you and your family as you go on this journey with Odella.

    Not surprisingly, you've received wonderful advice from some experienced moms on this site. I agree with all that they have said.

    When my daughter was diagnosed at age 8 we also had a disappointing first specialist visit. It turned out, he just didn't see many children - mostly teens and adults. Scoli is just managed differently in the younger ones.

    It is so important for her to be treated by a specialist who has a lot of experience with Congenital Scoliosis. You may have never expected to have the need to travel out of your area for medical care for your baby, especially since you live by such a renowned medical center as Duke, but keep it in mind as an option, even if just for a second opinion (I wouldn't even count that first specialist visit)

    You have found a great resource here, for information and support.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  14. #14
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    997
    Hi Andi,

    Reading Sharon's excellent post gave me some questions you would want answered before proceeding to surgery. When they remove the hemi at T9, would they be putting in any hardware, such as growing rods or fusing any areas, or can they simply remove the hemi and separate the ribs? What, if any, follow-up surgeries would be required as Odella grows? What about the other hemi that is higher? How will that be handled? What are the risks and benefits of each different surgical approach, and how will these affect her growth and development?

    I agree with the others that congenital scoliosis is rare, and many excellent physicians will not have seen many cases of it. I know we're harping on you a little about going to Shriner's, but I would strongly urge you to at least contact Janet Cerrone by e-mail or phone at Shriner's and touch base with her about Odella. Odella's situation is not common at all, so you definitely want to hear all of your options before you commit to one surgeon or surgical approach. No disrespect to Duke, but as Maria pointed out, Shriner's Philadelphia is one of the very finest, cutting edge pediatric spine centers in the world. They routinely see cases that other places don't, and this experience would be very helpful to Odella's care. Please consider it. You will not regret it. It sounds like Dr Lark would be entirely open to getting another opinion there too, which is a plus!

    Best of luck, and do keep in touch and let us know how you and your family are doing. This must be very overwhelming for you all.
    Last edited by leahdragonfly; 03-07-2012 at 09:58 AM.
    Gayle, age 46
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  15. #15
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Adding to what Gayle said (and not to beat a dead horse), but keep in mind that very often other doctors from around the country refer the most difficult and challenging cases to a handful of hospitals that routinely deal with those types of cases, with Shriners Philly probably being at the top of that list. Again, no disrespect to Duke, but I will repeat what was said to me by the anesthesiologist the night before David's surgery. He was a 50-ish man who said he had been in the field for decades and had worked at some very prestigious hospitals - and then he said to me "for what your son is here for - pediatric spinal surgery - you are in the best place in the country, perhaps the world".

    I second Gayle's thought that you contact Janet Cerrone - you have absolutely nothing to lose and potentially everything to gain. Janet is extremely knowledgeable and also very easy to talk to - parents love her. I would even be happy to 'introduce' you to her if you like :-)
    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

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