Re: We have an appt with UCSF Orthotics - Looking for insight

[Guest guest]

Ana,

I haven't gone to that specific place, but as long as you have a good ortho, the helmet will work if your son is bad enough, especially starting this early. Banding is recommended when the skull measurements are asymmetrical to the tune of 10mm or more. Your son may never have a perfect head, but you'll see improvement crazy fast.

I was in your shoes almost two months ago. My daughter has severe tort that she's actually getting step one in the lines of surgical treatment to help correct in a couple weeks. She was born with it and a plagio that got worse out of the womb do the tort. PT and repositioning can only do so much and in our case it wasn't enough. When we learned that she really did need the helmet we were crushed at first. We had all the questions and the heartache to go with it. Were we doing the right thing? Was it going to hurt her? Was it worth it?

Do it if you have any doubt about his head shape. The sooner he's banded the better and quicker the results as a general rule. It was a rough decision for us, but we couldn't be happier we made the decision we did.

Elaine was casted at 4mos and had the helmet by 4 1/2. After less than two months the improvement is amazing. She has a ways to go before she's rounded out, but the progress is better than expected so far. Our ortho is impressed at her growth rate and how quickly she is rounding out. After her surgery she'll be reevaluated by the surgeon to see if she should have a second helmet, or if she'll be fixed enough that she'll be 'done' when she out grows her first one. I'm thinking she'll need a second one, but we're hopeful we'll be done.

If you aren't already, you need to address the torticollis through PT. Plagio and tort tend to go hand in hand so to really fix the plagio, you need to resolve the tort issues.

Good luck and welcome to the group.

~

Mother to Elaine (Twin A) - helmet for 6 weeks

On Tue, Nov 18, 2008 at 12:08 PM, Ana <manzur_ar@...> wrote:

Hi there,My 4 month old baby boy has an appt with UCSF orthotics this comingThursday 20th Nov. I am feeling nervous about it and I am not sure ifwe are doing the right thing. I would love to find out from those who

have gone there what your experience has been like.Luke has torticollis and posterior plagiocephaly on his right side.Our neurologist (dr. Shallat) said that it could correct itself (notguaranteed) but he said that we could look into the helmet therapy

(not guaranteed to work either). Many thanks,Ana

[Guest guest]

Another mom on this board - Cecily Chudacoff - is currently going to UCSF

and got a STARband from them. From the posts that I have seen from her she

is having a good experience there. Hopefully she'll see this post and chime

in.

Rarely does plagio correct itself and a band will almost always correct it.

Molly

Novato, California

Nicolas, 3, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5.5

, 9

We have an appt with UCSF Orthotics - Looking for insight

Hi there,

My 4 month old baby boy has an appt with UCSF orthotics this coming

Thursday 20th Nov. I am feeling nervous about it and I am not sure if

we are doing the right thing. I would love to find out from those who

have gone there what your experience has been like.

Luke has torticollis and posterior plagiocephaly on his right side.

Our neurologist (dr. Shallat) said that it could correct itself (not

guaranteed) but he said that we could look into the helmet therapy

(not guaranteed to work either).

Many thanks,

Ana

------------------------------------

For more plagio info

[Guest guest]

Hi Molly and Ana,

Yes Ana, we've been at UCSF for the past almost 6 weeks now with a StarBand. We've been seeing Darrel (Orthotist) and he seems to have quite a bit of experience with banding babies, and he's a nice guy too. We did get off to a slow start, taking about 3 weeks, or more, to get the band just right for Diego (6.25 months)... he was having lots of red spots appearing all the time, but now we're good to go. The most amazing thing is that even though we had a slow start, and were wearing the helmet only about half time, at best, we have seen such an incredible improvement already, it's unreal. I think it's partly because he's sitting up and is rarely laying down anymore, but either way, I would highly recommend the band. After the few weeks have gone by and everyone has adjusted to it, the helmet is really no big deal... just another part of getting dressed in the morning (and evening).

If you want to call me with any questions or concerns, here's my cell # 415.279.3341.

Good luck!

CecilySan Francisco, CA

Diego, Starband 6 weeks

Plagiocephaly From: mafoley@...Date: Tue, 18 Nov 2008 11:26:22 -0800Subject: RE: We have an appt with UCSF Orthotics - Looking for insight

Another mom on this board - Cecily Chudacoff - is currently going to UCSFand got a STARband from them. From the posts that I have seen from her sheis having a good experience there. Hopefully she'll see this post and chimein.Rarely does plagio correct itself and a band will almost always correct it.MollyNovato, CaliforniaNicolas, 3, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,Graduate!, 5.5, 9-----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ]On Behalf Of AnaSent: 18 November 2008 09:08Plagiocephaly Subject: We have an appt with UCSF Orthotics - Looking for insightHi there,My 4 month old baby boy has an appt with UCSF orthotics this comingThursday 20th Nov. I am feeling nervous about it and I am not sure ifwe are doing the right thing. I would love to find out from those whohave gone there what your experience has been like.Luke has torticollis and posterior plagiocephaly on his right side.Our neurologist (dr. Shallat) said that it could correct itself (notguaranteed) but he said that we could look into the helmet therapy(not guaranteed to work either). Many thanks,Ana------------------------------------For more plagio info

[Guest guest]

Hi Ana,

My son Marcus is 4.5 months and he has been in his doc band for 2 weeks (with

visible results already I might add!) It was a tough decision for us too and I

fretted and cried about it. Marcus also has tort and positional plagio on the

right side. His is considered mild (8mm) and four pediatricians in his dr's

office told me separately that they wouldnt band him and that it would fix

itself. After two months of intense repositioning, weekly PT, and home

stretches, I became absolutely convinced that it would not correct on its own.

In any case, I didnt want to wait and find out. If it's bothering you enough,

just do it now. You'll never regret taking action to help your child - it's

INaction that's regrettable. And I can definitely say, it's not nearly as bad

as it seemed before the helmet was on. I honestly barely notice it except when

he bonks me in the face with it!

Good luck, and come back and tell us what you decide.

Aimee

Mom to Marcus, 4.5 months, DocBand 2 weeks

> From: Ana <manzur_ar@...>

> Subject: We have an appt with UCSF Orthotics - Looking for insight

> Plagiocephaly

> Date: Tuesday, November 18, 2008, 12:08 PM

> Hi there,

>

> My 4 month old baby boy has an appt with UCSF orthotics

> this coming

> Thursday 20th Nov. I am feeling nervous about it and I am

> not sure if

> we are doing the right thing. I would love to find out

> from those who

> have gone there what your experience has been like.

>

> Luke has torticollis and posterior plagiocephaly on his

> right side.

> Our neurologist (dr. Shallat) said that it could correct

> itself (not

> guaranteed) but he said that we could look into the helmet

> therapy

> (not guaranteed to work either).

>

> Many thanks,

> Ana