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Thread: Questions / Help on Direction for my recently diagnosed 9 month old daughter

  1. #1
    Join Date
    May 2010
    Posts
    2

    Questions / Help on Direction for my recently diagnosed 9 month old daughter

    I have created the following history of event of my daughter to help inform on the background of what we have been through over the last few months. I am trying to get the following questions answered which may or may not require understanding Quinn's history. My specific questions follow this section and then the history follows the questions. Any help on the direction would be greatly appreciated. Reviewing all of the options, after having read everything on the web I could get my hands on, has just created many more questions. I have also visited ISOP and read extensively in this forum. Thank you for any help!!

    Questions
    We had a few questions for Dr. Sullivan when he first gave us the diagnosis. In some way we were temporarily relived that the diagnosis was not something more severe. When we got home the web surfing began and we started to educate ourselves on the diagnosis. We have many more questions now and would love any advice that this group can provide. We feel there is a high sense of urgency as my fear is that if the PT assessment did not see the curved spine, it may not have been there 1 month ago upon initial evaluation.

    Here are some of our questions after countless hours of surfing and reading:

    1. Do the additional symptoms I describe match any other genetic abnormalities that we should research / test?
    2. Since the curve of the spine is >20 degrees (Quinn has 35 degree curve) does this mean it is Progressive Infantile Idiopathic scoliosis?
    3. It seems like casting was in favor, was replaced by bracing, and now is coming back into favor. I have read a few articles that reference Dr. Mehta’s casting methods. Is this a generally accepted practice or an alternative solution. My reading seems to indicate that is the only non-surgical corrective approach. Is that true?
    4. Can bracing correct the spine in infantile scoliosis or only stop further progression of the curve?
    5. Does casting correct the spine in a high percentage of the cases? (I have read the cases where it has)
    6. Why cast over brace?
    7. If serial casting is in fact better why is not more widely adopted?
    8. We are willing to travel to wherever we need to go to get this handle in the best way possible. I have read that Dr. Peter F. Sturm, M.D at Shriners in Chicago does Dr. Mehta trained casting on the AMIL frame.
    9. How does one chose bracing over casting?
    10. How does one chose one doctor over another to go down this relatively lengthy path of scoliosis treatments?



    Plagiocephaly and Torticollis Identification and Treatment (4 month – 9 month of age)
    At 4 months the nurse noticed a flat spot. She said we needed to make sure you are doing tummy time and altering where she is lying on her head. We spent the next 2 months trying to change laying positions. After six months the doctor asked if I felt the head shape was improving. I said no. Our doctor provided a diagnosis of Torticollis as she also had head & neck movement issues. She suggested that, with my prescription, I go to Cranial Technologies (Oak Brook Terrace, IL) in to have the shape of Quinn’s head evaluated. At Cranial Technologies (http://www.cranialtech.com/) . Their description of Quinn symptoms were as follows:

    “Quinn is a 5.75 month old female referred to Cranial Technologies for treatment of her plagiocephaly. She presents with right parietal occipital flattening and associated facial asymmetry. She has an ear shift with the right ear anterior to the left and the an increased head width to length ratio”

    Another issue that was identified while the physical therapist at Cranial Technologies fitted Quinn for plagiocephaly bands was that her neck muscles were very stiff and she had poor core body strength and that we should look into physical therapy.

    At Cranial Technologies the DOC bands were applied at 6 months, and are estimated to be removed next week (5/10/2010), making total treatment time 3 months. To our untrained eye the improvements are amazing. The professional review of her progress next week will determine whether she is done wearing the bands. Based on Cranial Technologies suggestion on getting PT, at approximately 7 months old, The State of Illinois, Child and Family Connections of DuPage provided a general PT assessment and found a 42% delay in Motor Development. Around 8 months, we found a local PT that had infant training and Quinn began receiving PT treatments twice a week. Quinn has shown significant improvements to in neck flexibility and the PT stated she felt core body strength was also improving.

    Identification Scoliosis Identification (8 months – 9 months)
    Between month 8 and 9 my wife noticed that Quinn had a very pronounced curve and scheduled an appointment with Quinn’s pediatric doctor. The doctor stated that she was not very familiar with infantile scoliosis, as it was extremely rare and instructed to see a pediatric orthopedic doctor in Naperville, IL. The appointment was schedule for 1 week out. In the mean time we scoured the web and consulted friends and family. The general consensus was that scoliosis can be a symptom of something more life threatening such as brain tumors and other issues. Upon this realization we decided to seek out a pediatric orthopedic affiliated with a larger teaching hospital that would have access to multiple disciplines under one roof. In our minds this would allow faster cross department review and assessment of the results.

    Professional Assessment of Scoliosis by Doctor Sullivan (9 months)
    On Thursday April 22nd, 2010 we visited Dr. Christopher Sullivan at University of Chicago (Comer Children’s Hospital - http://www.uchicagokidshospital.org/...-sullivan.html ). “Dr. Christopher Sullivan is a highly regarded expert in muscle and skeletal disorders in children and adolescents”. At that time Dr. Sullivan ordered Quinn to have x-rays taken to see if her visually curved spine was the result of growth related abnormalities. According to Dr. Sullivan, the films did not show congenital defects or any other abnormalities, aside the approx. 35 degree curve in the spine. Dr. Sullivan ordered an MRI to check for other issues that can create scoliosis. On April 28th, 2010 Quinn was sedated and had a 2 hour MRI. The results from the MRI have been preliminary read by Dr. Sullivan (still awaiting radiology / neurosurgeon) and he did not see any brain tumors or any other signs of something more severe. We are still awaiting a reading by the radiologist / neurologist.


    The Diagnosis and Proposed Treatment
    Dr. Sullivan said Quinn has infantile idiopathic scoliosis and has proposed treatment with a body brace (like the attached picture – not my kid). Angela S. Kozinski from BioConcepts in Burr Ridge, IL (http://www.orthotic.com/) was onsite at the Hospital and Dr. Sullivan brought her in an introduce Angela. He said she would be responsible for creating the brace that Quinn would need to wear.
    Last edited by QuinnsDad; 05-07-2010 at 05:37 PM.

  2. #2
    Join Date
    May 2010
    Posts
    2

    Quick Update

    I just got off the phone the Heather Hyatt Montoya from ISOP and she said since we live in Chicago we are very fortunate to have Dr. Peter Strum in our backyard. She has suggested we apply for access to Shriners and get in to see Dr. Sturm. We will be following through with that suggestion.

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    QuinnsDad,

    You read my mind!!

    I know Heather personally - and I doubt there is another parent on the planet with more knowledge and experience about casting and infantile scoliosis. She has helped countless families in your situation.

    I also know of Dr. Sturm and have spoken with many of the parents of his patients and he is, by all accounts, one of the best.

    You could not be in better hands - best of luck and please keep us posted!

    p.s. While you should definitely submit the application to Shriners through the usual process, if you want to get in as quickly as possible, it wouldn't hurt to call Dr. Sturm's nurse or care coordinator. We go the the Shriners Hospital in Philly and I know that when folks call and speak to the right person there, it often takes just that one call to set up an appt. Unfortunately, I don't know who the contact person is for Dr. Sturm but that shouldn't be too difficult to find out. Everyone I have ever dealt with at Shriners has been amazingly helpful.
    Last edited by mariaf; 05-08-2010 at 10:34 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

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