Introduction

[Guest guest]

Hi, I just wanted to introduce myself and I also have a few

questions. I want to apologize in advance for this being so long,

but I have just been obsessed with getting help for my son and this

board seems like the most knowledgeable and experienced that I have

found so far.

Our story:

My son is 7 1/2 months old and is finally being evaluated for

plagio. He has flattness on the right side and a " bulge " on the

left. He was born 4 weeks early and always turned his head to the

right so I'm sure the softer skull from being born early had a lot

to do with it. It didn't occur to me until recently but during my

labor with him I pushed for 2 1/2 hours. During this time he

was " stuck " under my pelvic bone and was turned sideways. A few

hours after he was born I moved his hair back and the entire right

side of his head was purple from the birth. I don't know if this

had anything to do with the flattening but I thought it might

somehow be related.

At about six weeks we noticed the flattening and like so many

stories that I've read our ped told us that it would round out on

its own once he was off his head more. This made sense to me. But

when he got to be about 5 months and it was getting even worse we

started aggressive repo and about a month and a half later it still

had hadn't improved. I then pushed it with her again and she acted

like I was crazy for mentioning a " helmet " and she said she couldn't

figure out why any child would need that. I was absolutely shocked

that she knew nothing about it and felt cheated that we had wasted

those months because I trusted a doctor who wasn't even educated

about plagio.

At about 6 months I mentioned that he couldn't even turn his head to

the left and his doctor had us start doing some neck stretching

exercises and the condition improved almost immediately. Even

though she never really diagnosed him with torticollis or even

mentioned the term for that matter I now know that's what it was.

Anyway, I then started non stop research so that I could figure out

what needed to be done myself. I still wasn't sure whether he

needed a helmet or not because it wasn't obvious to other people

unless I had pointed it out and he doesn't have any facial assymetry

(as far as I can tell) other than slight ear misalignment. But when

I came across a group " untreated plagio " and saw pictures of

kids who were 3 years old up to 8 years old whose heads looked just

the same as my son I realized that there was a good chance that it

was not going to correct itself. When I read about how much guilt

and hearbreak they were dealing with because they hadn't done

something when their children were younger I knew that I absolutely

had to demand treatment.

I finally found a doctor in my area who specializes in this and we

have an appointment with her on Monday (YEAH!). I'm really hoping

that she will just write the prescription and we won't have to waste

anymore time than we already have. I was also so excited to find

out that there is an orthotist in my city who does STARbands. When

I asked about the level of experience the orthotist had with banding

she kind of laughed and said that he had 4 patients right now. I

said " he only has 4 patients with bands " and she said " Oh, no. He

has 4 in the waiting room right now. " So I feel really good about

that. I really wanted my son to have a DOCband or a STARband as to

my knowledge they are the main " active " orthotic devices (correct me

if I'm wrong) and I really think this is what would be most helpful

since we're starting so late. I would have preferred a DOCband

because I've heard only wonderful things about them, but the closest

location to us is 4 hours away and that is just not a trip that is

possible for us to make every 2 weeks especially with a baby. The

other options we have are a Danmar helmet and a Michigan

molding helmet (made by the University of Michigan) and I don't

really know if these would be better than a STARband or if it's the

other way around.

Anyway, I'd really appreciate it if you could answer some questions

for me:

Is there any other work up that should be done (like CT scans, etc.)

before jumping right into the band?

Can you tell me your experience with STARbands and any advice you

have for me regarding them?

From your experience are there advantages to the STARband over the

other " helmets? " Which would be most effective?

Have any of your children started treatment at this age (at least 8

months before he's in the band) and still gotten good correction?

How long were they in it?

Thank you so much in advance for all the help.

Sara

Mom to Austin with plagio, born 02-03-06 (4 weeks early), hopefully

in a STARband within the next few weeks