Special Needs

expierence with scoliosis and/or torticolis?

anyones LO have scoliosis? how was it identified and by whom? what is the plan to correct it as a baby and has anyone told you it would affect your LOs ability to start walking on time or overall gross motor development?

my DS has slow kidney function, its a long story but over all is healthy and not on dialysis but he is affected by his kidney function in regards to his appetite. having low amniotic fluid caused him to have toricolis and apparently now he has scoliosis as well. a recent visit from a PT which we just started with mentioned it was only slight but i am concerned of course. just wondering in what context i should take it among the other health issues he has. i am not phased by the torticolis much because im confident that can be corrected and besides not holding his head stable you wouldnt know because he can look around, just not do tummy time very well.

Re: expierence with scoliosis and/or torticolis?

  • Has your little one had xrays of his spine/neck?  I ask because my son, who just turned one, has a series of vertebral anomolies, including hemi and butterfly vertebrae, that make him more likely to develop congenital scoliosis.  These were detected when he had a chest xray at 1 day old due to a heart murmur.  We now see a spinal orthopedist - at this point we're just in a watch and wait period where we go every 6 months or so for xrays to make sure things are progressing rapidly.  He also has abnormalities in his cervical spine (up in the neck area), which make him have a head tilt and loss of range of motion in his neck.  These are caused by the vertebral anomolies, rather than tight muscles, as is generally the case with torticollis.  I think it's important to rule out any spinal issues b/c our son is not able to recieve any passive stretching (the normal treatment for torticollis) because of the underlying issues with teh bones. 

    In terms of development, my son has been receiving Early Intervention for gross motor for about 4 months.  At this point, he's just about walking and I'm not very concerned about it (my older son didn't walk until 14 months so he's right in line with that)...

    Anyway, best of luck figuring out exactly what's going on.  I think it's probably worth consulting an orthopedist to get a better idea of the extent of everything.

     

  • imagemelissa-n-paul:

    anyones LO have scoliosis? how was it identified and by whom? what is the plan to correct it as a baby and has anyone told you it would affect your LOs ability to start walking on time or overall gross motor development?

    my DS has slow kidney function, its a long story but over all is healthy and not on dialysis but he is affected by his kidney function in regards to his appetite. having low amniotic fluid caused him to have toricolis and apparently now he has scoliosis as well. a recent visit from a PT which we just started with mentioned it was only slight but i am concerned of course. just wondering in what context i should take it among the other health issues he has. i am not phased by the torticolis much because im confident that can be corrected and besides not holding his head stable you wouldnt know because he can look around, just not do tummy time very well.

    P has scoliosis, her PT first identified it & then we went to the pediatric ortho dr, who said at that age (4 months) he wasn't too concerned.

    It got worse, before it started to get better.  We just saw the ortho again a month and half ago & it was between a 5degree & 10degree curve.  (she moved during xray).

    If it's above 10 degress their are surgical pediatric options..we didn't get into it though bc she was screaming & we werent' a candidate.

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • It is hard knowing the uncertainty of a diagnosis and the outcome.  My LO was born on the 22nd.  We thought he was perfectly healthy as ultrasounds never showed anything abnormal.  But lo and behold he was born with scoliosis and missing 5 ribs on his left side!  We have yet to see a specialist as we are in the process of setting up all the appointments.  Once we find out from there what the severity of his problems are, we are likely seeking help from the shriners as they specialize is orthopedics (this was told 2 me by my pedi.)  I have done nothing but cry off and on and this week has been so hard emotionally. Our pedi. is also in the process of setting up early intervention for him.  So im right there with you in not knowing how it will effect my LO.
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  • DS only had Torticollis and he actually had pretty good head control--even at 2 months, when it was diagnosed by his pedi.  His case was considered moderate and he was in outpatient physical therapy for 7 months--starting at 2x per week, then to 1x per week, then 1x every other week with extra visits when he regressed (toward the end). 

    While Torticollis IS treatable, you still need to be pretty vigilant re: the stretches. 

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