Opinions about my daughter

[Guest guest]

She definitely needs to have the MRI. The dimple on her back and the feet

issues can be related to Spina Bifida Occulta that needs to be looked at and

ruled out as well.

Summer

In a message dated 1/21/2010 3:50:03 P.M. Eastern Standard Time,

curiousityandthecat@... writes:

I have posted before about Phoebe. She is 3 (almost 4 now) and has the

markers for OCT. Namely, sacral dimple, feet/ankle issues that required

braces, a few of her toes are drawn down awkwardly (from inexplicably tight

tendons)and hypotonia of the legs (again unexplained)I have posted before about

Phoebe. She is 3 (almost 4 now) and has the markers for OCT. Namely, sacral

dimple, feet/ankle issues that

His take on it was to monitor her but since we were not necessarily

considering immediate surgery, to wait on the MRI. Due to her age she would

have

to be sedated and she also has a congenital heart defect (bicuspid aortic

valve, she has two of the little " leaves fused together at the end of the

aorta so instead of three she has what appears as only two and this

mis-shapes the opening so there is slight regurgitation back into the chamber)

....the heart issue further complicates the need for a sedated MRI. So I have

been sort of waiting with fingers crossed trying to let her grow a little

more. BUT!

Recently, whenever she has gotten herself worked up (ie throwing a little

crying fit) she starts complaining of a " bad headache " . Obviously, this is

a flag to me. But I don't want to put her in potential harms way with a

sedated MRI over something that may be nothing. I am waiting to hear from her

ortho and my own doctor wo weigh in...any other thoughts??

[Guest guest]

I have posted before about Phoebe. She is 3 (almost 4 now) and has the markers

for OCT. Namely, sacral dimple, feet/ankle issues that required braces, a few of

her toes are drawn down awkwardly (from inexplicably tight tendons)and hypotonia

of the legs (again unexplained). She has a new pediatric ortho who was

surprisingly well versed on TC. We discussed my history and possible TC as well

as my ACM.

His take on it was to monitor her but since we were not necessarily considering

immediate surgery, to wait on the MRI. Due to her age she would have to be

sedated and she also has a congenital heart defect (bicuspid aortic valve, she

has two of the little " leaves fused together at the end of the aorta so instead

of three she has what appears as only two and this mis-shapes the opening so

there is slight regurgitation back into the chamber) ...the heart issue further

complicates the need for a sedated MRI. So I have been sort of waiting with

fingers crossed trying to let her grow a little more. BUT!

Recently, whenever she has gotten herself worked up (ie throwing a little crying

fit) she starts complaining of a " bad headache " . Obviously, this is a flag to

me. But I don't want to put her in potential harms way with a sedated MRI over

something that may be nothing. I am waiting to hear from her ortho and my own

doctor wo weigh in...any other thoughts??