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Thread: Please Read!!

  1. #1
    Join Date
    Jan 2006
    Location
    Idaho
    Posts
    6

    Exclamation Please Read!!

    My name is Brenda and I posted my daughter Allana's story on here and haven't been back since. I have questions and need advice.
    My little girl was diagnosed with Ideopathic Infantile Scoliosis when she went in for her 1 year check up. I had been complaining to my doctor for months that she would not sleep on her back, her head tilted, and she always rolled 1 direction. She was slow to start crawling and had a difficult time.
    She had an MRI, catscan, xrays and was determined to have a 63 degree curve. She was placed in a TLSO brace and I returned in 2 weeks to have her first check up. In her brace she was 53 degrees but they took no xrays of her without it.
    I was scheduled for her first 3 month check up and here are my problems, please help.

    When I arrived for her check up which she see'd her Orthopedic Spinal Specialist and then the orthopedic specialist who made her brace, so I can relay info to him to adjust her brace. I was turned away due to her state medical card being denied. The state failed to notify me of my daughters ineligibilty. Then I had to apply for Chip program due to my husbands income, which really isn't that much and now I have to wait 45 days for an answer.

    I refuse to return to her specialist now do there much rudeness and inconsideration for my daughter. They just turned us away with no regard.

    I didn't even have the chance to explain how I no longer think my daughters brace fits right, she is miserable, and I worry about her well being without it and did not even get to see if shes getting better or worse.

    So out of anger and wanting my daughter to be well again I want the best for her so I sent my ap to Shriners in Portland, 8 hours away but in my mind necessary.

    I know long post but here are my questions, please help.

    1, How long will I expect to wait for a return from Shriners on Allanas ap, she need to be seen yesterday!!

    2, Will she be able to do follow ups closer to home?

    3, My daughter (19) months old is still not walking, she walks along things and holding my hand, but seems far from doing it on her own, anyone else see this with there little ones.

    4, Also my daughter started out walking on the TOPS of her feet, now so that her feet have a major arc and almost seemed deformed, there getting better but am still worried, anyone?

    5, Allana also seems to be behind on her speech any links maybe.

    See when she was born the used vaccum suction, that caused a calcification on her skull, so she has a lump on her skull where it was pulled together on the left side of her head, the same way the curve in her back goes, does anyone think theres a connecion.

    All of her doctors have seemed so unconcerned and I am looking forward to going to Shriners, I was just hoping other parents of babies with scoliosis maybe could give me some type of advice or input.

    Please contact me!!!!!
    Sorry for the long post, I found it necessary

    THANK YOU

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140
    Morticia,

    Wow....8 hour trip!!! There are organizations that can get you there for free, I would consider giving them a call. I'm sure you and your daughter would qualify. I think the closest Shriners to you that would be worth the commute would be Shriner's Utah. If you could get in with one of the organizations that can get you there for free, go for it! As far as I know, if you do a phone application....the wait time for an appointment is three weeks. Many many families of children with infantile scoliosis do the trip to Utah on a regular basis.




    Angel Flight America
    http://www.angelflightamerica.org

    Any Baby Can
    http://www.abcaus.org

    Miracle Flights for Kids
    http://www.miracleflights.org

    Northwest Airlines
    http://www.nwa.com/corpinfo/aircare.../kidcares.shtml

    PatientTravel.org Wings for Children
    http://www.wingsforchildren.org/pilot.htm

  3. #3
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi brenda,

    where to start????

    1. in my humble opinion (and i'm not a doctor, obviously), the tlso brace that was made did not fit very well. when my son was in a brace from 18 mos to 2 1/2 yrs old, the orthotist and orthopaedist was very specific in that a tlso brace should correct 50%. 10 degrees is not much. but at this point, it is really not important since you will not be returning there. did she ever have a traction x-ray or bending x-ray to determine how flexible her spine is?

    2. i'm really concerned about your daughter tip toeing when walking and high arches. i could be wrong, but i believe that could be an indication that she has a tethered spinal cord (carmell?). do you have a copy of the mri? was it read by a pediatric neurologist/neurosurgeon? actually, reading your original post, was it a brain and full spine mri? that needs to be followed up. no bracing will help if her spinal cord is tethered! if you don't have a copy of the mri, then you can call the hospital and request one. don't be shy about that! you have every right to have all the information that is in her medical record. i would request a copy of all the notes and x-rays as well so you have that when you go to the shriners.

    now to your questions:

    3. you should call the shriners hospital directly and try to expedite your application process. tell them it is urgent. i would also like to second celia's suggestion about going to salt lake city shriner's hospital instead. they are well known for dealing with infantile idiopathic scoliosis patients. dr. d'astous has been a leader in this respect.

    4. as for a more local ortho . . . maybe the new ortho at the shriners hospital can recommend someone for you.

    5. as for delayed walking and speech, maybe it is nothing and this is just her progress (although i would make sure about the tethered spinal cord). since she is under 3 yrs old, she has access to early intervention. this is a program that once your child is evaluated and determined to need help in certain areas like gross or fine motor skills or speech, therapists come to your home and work with her. do you live in idaho? here's the information, but it depends on what area you live in:

    http://www.healthandwelfare.idaho.go...=291&mid=10476

    okay, this is a very long response, but hopefully, you can get some help for your daughter soon!

    please keep us updated,
    deshea
    mom to lucas (4 1/2 yrs old, diagnosed with scoliosis at 18 mos at 68o/45o, tight/fatty filum detethering surgery at 22 mos, braced for a year, casted for 2 years, currently out of cast 17o/10o and in cast 8o/4o)
    and ruby (almost 2!!)
    north of boston, ma but we travel to erie, pa so that lucas can be treated by dr. sanders at shriners hospital

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    I don't know how I missed the first line: My name is Brenda...... I guess Morticia stuck with me since I was thinking of the character from the Adam's Family.

  5. #5
    Join Date
    Jan 2006
    Location
    Idaho
    Posts
    6

    Smile Thank you for your replies.

    Well, heres the update and the answers to some of your questions, especially concerning the concerns about the tetherd spinal cord. First, I did Allanas application over the phone and there supposed to call me tomorrow. Barb the woman I spoke to, took Allanas application straight to the cheif of staff. As for my choice in actuall Shriners hospitals, we have lot's of friends and family in Portland.
    As for what the doctors covered when she was originally diagnosed and so forth, they did a sitting X-ray before she saw her Orthopedic specialtist.
    http://www.northwestspinecare.org/physicians.html this is the link to see more about her doctor, Dr. King. Then when we wen to see him, they did more x-rays but have only til this point done a sitting x-ray, standing x-ray, and another sitting with her brace on. They did an MRI, not sure if it was a brain and stem mri and I do believe Dr. King was in charge of the reading of it, to ensure that her there were no problems with her brainstem and that came back ok.
    Now as for the tethered spinal cord, that makes me very concerned. I have expressed to her attending physician, Orthopedic specialist and the prosthetic specialist that I was very concerned about her walking and her feet. See, she tiptoes, but she bends her feet down and back at herself so she is actually walking on the tops of her feet. It worries me because the arches in her feet have become too arched in my opinion, but all they have told me is to make sure she wears her shoes alot and if shes not walking by the time she's 2 then we'll look at it. That answer to me is inacceptaboloe.
    No one has ever mentioned to me about a tethered spine, I guess I assumed anything wrong would turn up in the mri and xrays.
    Next I never did think the brace fit properly but was assured it did. Also how did your son adjust to the casting, do you recommend it?
    Also thanks for the advice on her medical records, I do intend on doing just that. I appreciate the long caring responses, and the helpfull info, I'm not sure if anyone else has felt it difficult to get information, I have, it seems as if theres a lack of help out there for something so severe that effects such small children and is so serious. I thank everyone. But just one more quick question, in the beginning I was told part of the severity of this was the added pressure to her heart and lungs, does anyone know anything sbout this, they never brought it back up.

    Brenda, mommy of 19 month old Allana
    Diagnosed in Dec, 05 with Ideopathic Infantile Scoliosis

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Brenda,

    You mentioned that Dr. King read the MRI and didn't mention a tethered spinal cord. The part of the spinal cord that would affect the feet is the lower (lumbar) part of the spine. If you don't know if they did an MRI of the full spine, call the hospital where the scan was done and find out what what area of the spine was scanned. If they didn't do a lumbar scan, I strongly suggest you have a lumbar MRI done soon. As soon as the scan is done, have the MRI read by a pediatric neurosurgeon, not just a radiologist. And not an orthopedist. This will tell you much better information about her spinal column and whether or not its free-flowing (as it should be). When was the MRI done? If it was done prior to age 1 (even age 6 months) then a repeat MRI is warranted, especially with her symptoms.

    Good luck with your appointments. Hopefully you'll get an appointment with a good ortho at Shriners. I don't know many infants who have been treated at Shriners in Portland. You may want to consider one of the other sites where the docs are more experienced in treating infants/toddlers with scoliosis.

    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/

  7. #7
    Join Date
    Jun 2004
    Posts
    55
    Brenda,

    So sorry I didnt see this sooner, we also live in Idaho and my son has severe scoliosis, also seen by the same practice as Dr King. Sean was seen by Showalter for many years, had 5 surgeries here at our local hospital and then 2 more at Seattle Children's hospital. I would be happy to share more, but would prefer to go to private messaging instead if you dont mind...

    I will PM you now...

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  8. #8
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    brenda,

    carmell's advice, as always, is very good, and i couldn't have said it better. i'm not sure if i said this in my last response, but my son whose only symptom was infantile scoliosis had a tethered spinal cord due to a tight/fatty filum and it was detected by a full brain and spine mri at 18mos. it was originally read by a radiologist and then confirmed by a pediatric neurosurgeon. he was detethered at 22 mos. especially since allana's having symptoms that could be a result of a tethered cord, and the current docs (who aren't neurologists) are not concerned, then definitely go elsewhere! with your records and x-rays and scans, of course!

    my son adjusted very well in casts. it seems like it would be more difficult than bracing, but actually, it is easier in terms of his comfort and knowing that it is in the right place (since it can't come on and off like a brace). i could talk more about casting, but i don't want to overwhelm you too much. did i send you my private website with my son's history of scoliosis in pictures? it shows his back when he first was diagnosed, his braces, and then his casts, and currently a new brace for the summer. i will pm you with the address and password (if you are interested!)

    now for your question about heart and lung function -- yes, this is the most serious issue for young children who get scoliosis. the spine curving on one side ends up compressing the space that is there for the lung and also the heart. if the curve gets severe enough then it could impact lung function since the lung does not have the space it needs to expand for breathing or grow to its normal size as the child grows. my son has never had a lung function test. he did start out with a 68o/45o curve. i have not pushed for this test since he "seems" normal and doesn't get out of breath. i don't know, maybe i should to get a baseline, but i have not since his current standing x-ray shows a curve of 20o.

    anyway, another long post from me! sorry! i'll pm you now otherwise, i'll forget.

    good luck with any upcoming appts and please keep us updated.

    deshea

  9. #9
    Join Date
    May 2005
    Location
    UK
    Posts
    26

    neuro?

    Hi Brenda,

    I read your post and saw a lot of similarities with my daughter. She was born (prematurely) by emergency Caesarian. She did not walk without holding the furniture until she was 23 months and the scoliosis was picked up at 2 yrs. She also had problems with feet/arches.
    They did an MRI and brain scan that didn't pick up anything significant. However when she saw the neuro she reviewed all movement and diagnosed hemiplegia (slight damage to left hand side of brain). I'm not suggesting that your child has the same problem, but I would suggest that it is a good idea to get them examined by a neuro in case there is an underlying neurological condition which might have some bearing on the walking and speech delay.
    If this is the case, the good news is that therapy (much of which you can do yourself at home, once you have been shown) brings lots of improvement especially when the children are still so young.
    I do hope everything works out at Shriners for you, and hope that they help sort out the financial stuff.

    Best Wishes

    Kate

  10. #10
    Join Date
    Jan 2006
    Location
    Macomb, Michigan
    Posts
    8

    Shriner's is the BEST!

    Hi Brenda,

    My son, Liam, is now 16 months old and was diagnosed with Infantile Idiopathic Scoliosis when he was 4 months old (30 degree curve then). Long story short - we saw several local "specialists" who told us everyhting from "Wait... Liam will grow out of it (the curve)" to he needs surgery to implant rods and halo-traction. None of these suggestions seemed right to me nor were they acceptable - especially since not one of the specialists we had seen had ever dealt with a case as bad as Liam's.

    Liam's curve went from 30 degrees (Aug. 05) to 105 (Dec. 05) and still no one could tell me why or how or what to do; until I contacted the Intermountain Shriner's Hospital in SLC, Utah. THEY ARE PHENOMENAL there!!!!!!!!! I have nothing but the utmost respect and high praise for everyone there - especially Dr. D'Astous - Liam's orthopaedic surgeon. Please do look into contacting them and getting an appt./consultation. We travel from Michigan and it is worth every penny. Plus our local Shriner's was able to help somewhat. You can also look into "Angel Flights."

    The application/acception process was very quick and easy. Liam has had his first casting (risser cast) done in April and is doing wonderfully!! His curve, in the cast, was corrected over 50%!! It's amazing!! I would love to share more with you if you are interested. Please feel free to PM me or e-mail me at: moosie45@hotmail.com.

    Carmell and Celia are also TREMENDOUS, WONDERFUL sources of help, support and information!! They have helped me out sooooo much - I don't know what I would do without them!! XO

    I really hope things work out for you and your daughter - I know that this is a very scary, stressful time and situation. But with the support & info. that's given and shared here, it makes it just a little bit easier and doesn't make you feel so alone. Again, please feel free to contact me if you want more info. or just want to vent! Good luck and please keep us posted!!

    Jennifer O'Donovan
    * Mom to beautiful Liam (3-25-05) - severe infantile idiopathic scoliosis (in risser cast), severe GERD, restrictive lung disease, frequent pneumonia, hypotonia, torticollis

  11. #11
    Join Date
    Jan 2006
    Posts
    513
    Dear Moosie,
    I am so relieved at your results! I have been worrying about you and Liam for a long time.
    I am so glad you finally got help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!
    Big Hugs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

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