lots of questions, new to all of this...

[Guest guest]

My daughter is now six months old. At 4 months we started PT for her

torticollis. It has responded somewhat, but not enough. This week my

ped. referred us to a neurologist who recommends the Starband b/c of

her facial asymmentry..... my questions

- Although we have had an x-ray, should we still have an MRI to rule

out any underlying issues? The neurologist said he was on the fence

about it since it involved sedation.

- Has anyone had a good/bad experience w/ the STARband in Columbia, Md?

Should I drive little further and do a DOC band instead?

- I plan to get a second opinion from another neurologist. Has anyone

ever gone to Dr. Ahn (Hopkins) or Kenney Kreiger..any recommendations.

Thanks!

[Guest guest]

Hello,

Finally someone from the DC area! Welcome on board. You'll find that this group is not only a great resource but also a great support group. I feel so much better about the decisions I've made thanks to this group.

Anyway, my daughter is 6 months old now and also has torticollis. I took the matter into my own hands since the many doctors I saw kept saying that her head would round out. With time her plagio turned into brachy and now her head is pretty much flat on the back.

My doctor(s) would not refer me at first, so I went and saw specialists without a referral. I first went to Cranial Technologies in ndale, VA, then to Orthoamerica in Columbia, MD, then to Eastern Cranial Affiliates in Arlington, VA and also Hanger in andria, VA. I do not know where you live exactly but there are several options in this area. If you can, check them all out and decide for yourself.

My daughter, Maysa, ended up getting her band from Eastern Cranial Affiliates. She has been wearing it for a little over two weeks. It is too early for me to see any improvements but at her last visit, the ortho said that her head had grown 3mm in circumference since her initial measurements and all of it was good growth (meaning she didn't grow in width or in the forehead)

I really like Dr. Terpenning, the ortho at Eastern Cranial Affiliates and the maker of the ECA helmet, but you'll find that most people on this board have either a DOCband or a Starband. As I mentioned above, I did go to Orthoamerica in Columbia, MD and liked the way they handled things. Their helmet is way cheaper than the DOCband and their scanning and measurements were more acurate than those of CT (at least in my case). The drive is a bit too far though, so I opted for ECA.

Anyway, let me know if you have more qsts.

Leila, mother of Maysa 6m, ECA helmet

From: cinyhowes1 <cindyhowes@...>Subject: lots of questions, new to all of this...Plagiocephaly Date: Saturday, July 19, 2008, 9:34 PM

My daughter is now six months old. At 4 months we started PT for her torticollis. It has responded somewhat, but not enough. This week my ped. referred us to a neurologist who recommends the Starband b/c of her facial asymmentry.. ... my questions- Although we have had an x-ray, should we still have an MRI to rule out any underlying issues? The neurologist said he was on the fence about it since it involved sedation.- Has anyone had a good/bad experience w/ the STARband in Columbia, Md? Should I drive little further and do a DOC band instead?- I plan to get a second opinion from another neurologist. Has anyone ever gone to Dr. Ahn (Hopkins) or Kenney Kreiger..any recommendations.Thanks!

[Guest guest]

Hello and welcome to the group. Weekends can be a little quiet, so

hopefully someone local will respond. I'm not in DC area, so can't

comment on that starband location or docs. My daughter wore a starband

when we were in california for severe brachy (flat in back). Her head

shape didn't indicate any fusion so we didn't do any xrays etc. She

saw a cranio facial plastic surgeon and not a neuro.

Good luck and let us know what you decide.

-christine

sydney 2.5 yrs starband grad.

>

> My daughter is now six months old. At 4 months we started PT for her

> torticollis. It has responded somewhat, but not enough. This week my

> ped. referred us to a neurologist who recommends the Starband b/c of

> her facial asymmentry..... my questions

>

> - Although we have had an x-ray, should we still have an MRI to rule

> out any underlying issues? The neurologist said he was on the fence

> about it since it involved sedation.

>

> - Has anyone had a good/bad experience w/ the STARband in Columbia, Md?

> Should I drive little further and do a DOC band instead?

>

> - I plan to get a second opinion from another neurologist. Has anyone

> ever gone to Dr. Ahn (Hopkins) or Kenney Kreiger..any recommendations.

>

> Thanks!

>

[Guest guest]

Hi,

I can really only speak to the x-ray/MRI question. I am not sure why an MRI, generally the MRI shows soft tissue issues and the CT shows skeletal issues. If your dr is trying to rule out fusion of the plates a 3D CT scan (at high resoloution ie:1/2 - 1mm) is the way to go. As for the CT scan sedation is NOT needed. Some careful planning will do the trick. Make sure your child is tired and hungry at your visit - feed her and she'll fall asleep for the scan. The MRI takes longer, but I am not sure why this same trick wouldn't work (maybe you wold need to do an open MRI). The nurses and tech's that do the scan do this all the time and can help you. That said do a little research re: the risks of these scans, it just may not be worth it.

Good Luck

Audra

Re: lots of questions, new to all of this...

Hello and welcome to the group. Weekends can be a little quiet, sohopefully someone local will respond. I'm not in DC area, so can'tcomment on that starband location or docs. My daughter wore a starbandwhen we were in california for severe brachy (flat in back). Her headshape didn't indicate any fusion so we didn't do any xrays etc. Shesaw a cranio facial plastic surgeon and not a neuro.Good luck and let us know what you decide.-christinesydney 2.5 yrs starband grad.>> My daughter is now six months old. At 4 months we started PT for her > torticollis. It has responded somewhat, but not enough. This week my > ped. referred us to a neurologist who recommends the Starband b/c

of > her facial asymmentry.. ... my questions> > - Although we have had an x-ray, should we still have an MRI to rule > out any underlying issues? The neurologist said he was on the fence > about it since it involved sedation.> > - Has anyone had a good/bad experience w/ the STARband in Columbia, Md? > Should I drive little further and do a DOC band instead?> > - I plan to get a second opinion from another neurologist. Has anyone > ever gone to Dr. Ahn (Hopkins) or Kenney Kreiger..any recommendations.> > Thanks!>