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Thread: in need of knowlage,8month old dautghter with scliosis

  1. #1
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    Mar 2005
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    fairfield,california
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    Unhappy in need of knowlage,8month old dautghter with scliosis

    I found out a month ago that my dautghter has scoliosis she is only 8mths old
    and has a 20% in her thorasic and a 30% in her lubar. She was checked vissualy at a month old and had no signs of scoliosis then.when she was born she was 7lbs 1oz she only weighs 10lbs 5oz now, can't roll over yet, won't put any standing presure on her feet, is not scooting, can hardly lift head off a suface when laying on her stomachand and have been told not to put her down for more then 15mins. at a time unless she is slepping. I don't know what to do.The doctors are still trying to find out all of what is going on and I don't think they are telling me evrything because they are afaid to concern me.I don't know what to expect. If you can help with some info it would be helpful and appreciated

  2. #2
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    Oct 2003
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    Utah
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    Hi JoAnna,

    I can only imagine how overwhelmed and confused you are at this point. Please know you are not alone. There are several families who have been in similar shoes.

    I have some questions for you... Has your baby had an MRI? Does she have any other medical issues (i.e., GERD, neuromuscular problems, seizures, etc.)? I ask because a baby with *just* congenital scoliosis should not have developmental delays, unless there is an underlying cause. My son, Braydon, was born with congenital scoliosis - very visible at birth (even before birth during my 19 week OB ultrasound). He did not have any developmental delays. Sometimes there is a spinal cord problem that may be contributing to the scoliosis. Does she have a dimple, hairy patch above her buttocks, etc.? These would be signs of a closed spinal cord defect. Does she cry when you lift her legs to change a diaper? Things like that...

    I would hope you are seeing a PEDIATRIC orthopedist who specializes in infants with scoliosis. There aren't many out there, but there are some great docs. Make sure the docs answer your questions. If needed, look them in the eyes and say, "if this were your baby, what would you do?" Sometimes they need to realize you need information, or at least an "I don't know". I'd be happy to email you my phone number if you are interested in talking to someone. My email is boulderfam@hotmail.com Also, if you tell me where you live, I can maybe give you some suggestions on seeing a good ortho who will help you find answers.

    Take care and I hope you are doing well. It's very hard, I know. Hang in there.
    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/

  3. #3
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    Mar 2004
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    Hi JoAnna,

    I don't mean to worry you, but I think your child may have other issues besides scoliosis or at least not idiopathic. The reason I say this is because it doesn't appear as though she is reaching normal developmental milestones. At eight months, one would expect a child to be above 11 pounds AND one would expect the child to be crawling etc.... Is this your first child ? Try not to worry so much. I hope I haven't scared you - the last thing you need is someone like me telling you that there could be other things wrong with your child. Just take one step at a time and things will become clearer as the days unfold. We're here to listen.




    Celia

  4. #4
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    Mar 2005
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    fairfield,california
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    Celia & Carmell
    Thankyou for the response. Leila my dautgher is my second child I allso have a 5yr old son Alek he also has problems but of a differant sort (ADHD and ocular motor aprexia).Yes she has had a MRI I talked to the nurosurgen today, he said that she didn't have any problems with her spinal cord and is putting a refural through to the orthopedist in the pediatrics deptment but that they are verry bussy and he doesn't know when they can see her. She allso has a miss shaped head (the original reason for seeing the nerosurgen) and they are putting a refural through for her to get a helmate. Yes she does have a dimple at the end of her tail bone and a blue patch on her lower back (was told it is just a birthmark but it looks like a bruse).no she doesn't cry when I lift her legs to change her.She has already seen alot of specalist trying to find out why she has not been growing.I am just afaid that they are missing something or not thinking of all the possibilities. so here I am looking for people with personal experance in things of this nature hoping I can find out anything that might help.the more eyes and knowlage the better.
    Thanks
    JoAnna

  5. #5
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    Nov 2004
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    fl
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    Hey,
    I hate to hear of babies having these issues so young. It is heart breaking. My nefews daughter went through somethings and it was really hard for him to hear that his first baby may have problems like that. I suggested to them like I am suggesting that you check out muscular dystrophy. It could be so many things but just always be prepared to "hear" all things. Your first priority is getting that baby better and you are a great mom too come here. Educate yourself as much as possible and you are doing it here. I had issues young and it was due to spinal cord problems and my mother never heeded any warnings. I was able to have surgery to correct the scoliosis butit goes farther than that. My mom has spina bifida and I wondered if they checked for that and did the MRI show anything like that. The dip is a indication of spina bifida. The bruise looking thing you referred to does it have a bump anywhere near it? And why not do a cat scan? that usually shows everything. Give that baby lots of kisses and hugs for all of us. You stay strong and keep us posted.
    Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  6. #6
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    Mar 2005
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    fairfield,california
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    thanks for the the thread Krystal
    no there is no bump or inflamed area around her birthmark and the said that the resaults of her spinal cord MRI where that there is no damage or deformity to it, no fatty deposits or fiberous conections and they just did a blood test for muscular defects and I am still waiting for resaults.
    JoAnna

  7. #7
    Join Date
    Nov 2004
    Location
    fl
    Posts
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    Well that is great news about the spinal cord being normal. My neice has some type of muscular problem but they are in such denial that they wont take her for any tests. Her development is so slow. She has just started to put 2 words together at 2 years old. And her head has always looked lopsided. But they are younger parents and are afraid. I worry the most because with her dad (my nefew) his father had scoliosis and since I have it she is more likely to have these problems. Well take care and let us know.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  8. #8
    Join Date
    Mar 2005
    Location
    fairfield,california
    Posts
    9

    Thumbs up

    just got the resalts back for the blood test for muscular disorders it come back normal . Her pediatretion said that he has been researching other things because they are running out of ideas and will let me know if he finds out any other possibilties.

  9. #9
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73

    Talking

    I am so happy to hear that good news! I am sure that no matter the outcome she will still be loved but it is a hard road for a child with severe disabitlities like the one that was ruled out for your daughter. Now if they can find out how to fix and what is causing it. Is the pediatrician your going to send you to a specialist. I don't know for sure where you are at but a childrens hospital close by can help with referring you to a neurologist that has knowledge of these type of unknown causes. Again I am so glad to hear the outcome of the test where normal. Keep us informed and give hugs. Krystal
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  10. #10
    Join Date
    Mar 2004
    Posts
    1,140
    JoAnna,

    That is really great news ! You must be so relieved... it's so strange they haven't a clue what could be wrong Maybe your little girl will surprise everyone - I'm all for happy endings



    Celia

  11. #11
    Join Date
    Mar 2005
    Location
    USA
    Posts
    3
    Hi JoAnna!

    I was wondering where you are located...it may be helpful for you to go to a teaching hospital where they are very focused on research and may be abl;e to assist you.

    A children's hospital would also be a great place for you to be at.

    Stacey

  12. #12
    Join Date
    Apr 2005
    Posts
    1

    Similar situation with our daughter

    Hello Joanna,

    Our daughter has scoliosis and was diaginosised at about 6 months with the first hints at 3 months. She also had a misshaped head. In particular she had no soft spots when born and her head size was very small and not growing due to lack of soft spots. A further description of her head is that it was narrow in the front with a ridge on her forhead that ran vertically up from her nose. Also the left and right sides of her forhead sloped backwards towards the ears rather than being rather flat like most people. At 8 months old a plastic surgeon did surgery on her skull to give the brain room to grow. She was very lethargic from about six to 8 months and the surgery was a great success. We did physical therapy for about six months following surgery to get her moving again and now there is no stopping her. She will turn two in a few days and now all we have to contend with is a 60 degree curve and a scar that will be covered with hair.

    Hope this helps

  13. #13
    Join Date
    Mar 2005
    Location
    fairfield,california
    Posts
    9
    spent 7 days in wallnut creek, ca kaiser hospital on peds. floor for evaluation of eating habits.Leila is now on a 27 cal formula bottle and I have been told that if she does not eat a set amount by three more months they will put it a tube form her nose to her stomach and gave her some meds to keep her stools soft.she will be seeing the othiopedsiest this next week.and are going to put through a reffural for her to get a brain scan so see if she has a neroligicaly bassed muscel disorder.

  14. #14
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    Mar 2005
    Location
    fairfield,california
    Posts
    9
    I am seeing if that can sent Leila to the Lucile Packard area of Stanford she has to go down there any way for a helmet to fix her head

  15. #15
    Join Date
    Oct 2003
    Location
    Vancouver, Canada
    Posts
    20

    Red face

    Hi Joanna,
    I just wanted to post to show my support. It is incredibly difficult when you don't know what's wrong. My boys have scoliosis and some muscular weakness in the neck and back area. They are "hypotonic". It gets better as they get older. They were not a lot bigger than your daughter at her age, about 12 pounds. That is normal for them, I guess.

    It sounds like you are doing all the right things in trying to get help for your daughter. I hope that some of the other parents' suggestions are helpful but don't make you crazy with anxiety! To some extent we can only do our best and leave the rest up to nature, or God.

    Susan
    Surattius
    Mum to two boys with scoliosis

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