possible cranio--need help!

[Guest guest]

My 6-month-old daugther, Sophia, has plagio. I recently took her to a

pediatric neurologist to find out if it is craniosynostis or not. I

just wanted a diagnosis. He basically indicated that he thought she

probably had a fused suture(s), but would not recommend getting x-rayed

because he wouldn't recommend surgery anyway. I left with a px for

Cranial Tech., but if it is cranio, I don't think banding is

sufficient. Am I right? Needless to say, I wasn't very happy with

that appt.

So now, obviously, I need a second opinion, because I need a

diagnosis! Can anyone recommend a doctor in the Chicago or Far North

Suburban area? I've heard Dr. Vicari's name mentioned, but I don't

necessarily want to pay $300 for STARscan, unless it is diagnostic.

Any words of wisdom?

Thanks so much!

[Guest guest]

This guy sounds like a jerk. The concern with cranio is that it can

restrict brain growth. I guess he thinks that the sutures which might

be fused, aren't restricting growth so surgery isn't needed...

however I would want to know for sure. I think if surgery is not

required (brain growth not restricted) a band may help, but CT might

be able to answer that better. In the meantime I hope you can find a

doctor to give you better info. I would also follow up with this

doctor's office and ask for more information - which suture does he

think is fused, why doesn't he think surgery is required, do you need

a follow up appointment ...

If you do band you will need a prescription, do you have one from

this doctor or your ped? Please let us know what you find out next,

and sorry you had this frustrating experience.

-christine

sydney 2 yrs starband grad

>

> My 6-month-old daugther, Sophia, has plagio. I recently took her

to a

> pediatric neurologist to find out if it is craniosynostis or not.

I

> just wanted a diagnosis. He basically indicated that he thought

she

> probably had a fused suture(s), but would not recommend getting x-

rayed

> because he wouldn't recommend surgery anyway. I left with a px for

> Cranial Tech., but if it is cranio, I don't think banding is

> sufficient. Am I right? Needless to say, I wasn't very happy with

> that appt.

>

> So now, obviously, I need a second opinion, because I need a

> diagnosis! Can anyone recommend a doctor in the Chicago or Far

North

> Suburban area? I've heard Dr. Vicari's name mentioned, but I don't

> necessarily want to pay $300 for STARscan, unless it is diagnostic.

>

> Any words of wisdom?

>

> Thanks so much!

>

>

[Guest guest]

I'm sorry you had such a frustrating experience.I believe there is only one type of cranio that can go without surgery, but I'm not sure. I'm not sure about banding when there is already a fused suture. I know Cranial Tech provides post-operative bands.I'm sure someone here will give you information in your location -- but if you want to talk to others who are familar with craniosynostosis visit the Craniosynostosis and Positional Plagiocephaly Support Website, too... http://www.cappskids.org/good luckMom to Quinn (born 11/99) DOCband grad 10/00 for long/narrow headshape (scaphocephlic in shape, but no fused sutures).>------- Original Message ------->From : pinkfrostine[mailto:zebralive@...]>Sent : 3/19/2008 12:25:03 PM>To : Plagiocephaly

BR>>Cc : >Subject : RE: possible cranio--need help!>>My 6-month-old daugther, Sophia, has plagio. I recently took her to a pediatric neurologist to find out if it is craniosynostis or not. I just wanted a diagnosis. He basically indicated that he thought she probably had a fused suture(s), but would not recommend getting x-rayed because he wouldn't recommend surgery anyway. I left with a px for Cranial Tech., but if it is cranio, I don't think banding is sufficient. Am I right? Needless to say, I wasn't very happy with that appt.So now, obviously, I need a second opinion, because I need a diagnosis! Can anyone recommend a doctor in the Chicago or Far North Suburban area? I've heard Dr. Vicari's name mentioned, but I don't necessarily want to pay $300 for STARscan, unless it is diagnostic.Any words of wisdom?Thanks so much!---

---------------------------------For more plagio info

[Guest guest]

Sounds like you need find a new Neuro! Is there a childrens hospital in your area?

IF cranio is present I'm not sure that they will band - I think it's contraindicated. Anyone know for sure???

I don't think a Starscan will tell you if there is cranio - it is to be fitted for a band.

Let us know what you find out!

Jen and Luli - 27 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

possible cranio--need help!

My 6-month-old daugther, Sophia, has plagio. I recently took her to a

pediatric neurologist to find out if it is craniosynostis or not. I

just wanted a diagnosis. He basically indicated that he thought she

probably had a fused suture(s), but would not recommend getting x-rayed

because he wouldn't recommend surgery anyway. I left with a px for

Cranial Tech., but if it is cranio, I don't think banding is

sufficient. Am I right? Needless to say, I wasn't very happy with

that appt.

So now, obviously, I need a second opinion, because I need a

diagnosis! Can anyone recommend a doctor in the Chicago or Far North

Suburban area? I've heard Dr. Vicari's name mentioned, but I don't

necessarily want to pay $300 for STARscan, unless it is diagnostic.

Any words of wisdom?

Thanks so much!

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

Perhaps your Doc was a bit gruff but there IS one

place on a baby head that does begin to fuse shut

earlier - normally... not craniosynostosis.

I think it was the metopic sutures... Try to google

" normal fusion period of metopic sutures "

At our twins 3 month CT scan, both showed the same

suture beginning to close... sorry I can't locate our

copy of the CT Dr report to confirm which suture.

When I find it, I will send that to yall.

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