Re: New Member from Chicago--Debbie

[Guest guest]

Hi Rehka,

Welcome to the group! Sorry this reply is so late, but I see you've

already had your questions answered! I was concerned in your post

both about how long Kathan went between casting and fitting and also

how long he'll go between adjustments in an active band at a fairly

young age. I was glad to see you wrote to Debbie that you'll

request at least every three weeks. Did you end up leaving the band

on this weekend? How are his red spots? I'm so glad the diagnosis

of cranio that you guys were fearing was not true! What a relief!

When you get a chance, let us know how he's doing.

, mom to Hannah, DOC #3 3/30

Cape Cod, Ma

>

> > Hello Everyone,

> >

> > I wanted to share the story of my beautiful almost 9 month old

son

> > named Kathan (pronounced like )with the hope of connecting

> with

> > others experiencing similar concerns.

> >

> > Kathan recovered well from a complicated birth and short NICU

stay,

> > but we noticed early on that he continually favored looking to

the

> > right and had great trouble nursing in the cradle position. I

> > suspected tort, but these concerns were quickly dismissed by our

> ped

> > who thought Kathan could look to the left. We continued to try

to

> get

> > him to look to the left, but with little or no success.

> >

> > The 3 month checkup revealed Kathan had low muscle tone

> (hypotonia)

> > affecting his arms and we were sent to a pediatric neurologist

for

> > evaluation. It was this doctor who noticed Kathan had some

> > flattening at the back of his head, on the right side. My son

was

> 4

> > and a half months at the time, but had a full head of hair since

> > birth--thus the flattening was never caught earlier. They

> suspected

> > he might have cranio and sent us for an MRI and 3D cat scan,

both

> of

> > which " confirmed " this diagnosis (at least according to the

> radiology

> > reports, which used language such as " most likely " and " felt to

> be " .

> > We were in the process of moving from Ohio to Chicago and were

told

> > to follow-up with a cranio-facial clinic in Chicago and to

prepare

> > ourselves for significant surgery if we wanted to correct

> > this " cosmetic " problem. The ped neurologist told us

repositioning

> > would not help. The neurosurgeon we saw in Ohio before we left

> gave

> > us the ol' " it will round out on its own " and felt surgery was

not

> > needed.

> >

> > We made an appt to see a craniofacial plastic surgeon in Chicago

> and

> > to our surprise he told us Kathan did not have cranio, but had

> plagio

> > and torticollis! We were shocked and frustrated, because at

this

> > point he was 7 months and repo was not a viable option. It is

still

> > amazing to me that all the doctors who cared for Kathan never

ONCE

> > mentioned the word plagio. Anyway, after a confirmed second

> opinion,

> > we were helmet bound. I wanted to go to CT, but our doc had a

set-

> up

> > with a local orthotic company who uses the STARband. That

company

> > was supposed to send in all the paperwork for predetermination

of

> > benefits, but to this day, my insurance co (Cigna) still states

> they

> > never received it. I was getting impatient and concerned about

> time,

> > so I went ahead and had Kathan casted a month after our appt

with

> the

> > doc--it then took 3 and a half weeks to get the helmet! I am

STILL

> > waiting to hear about the predetermination.

> >

> > Kathan has been in his Starband for a week and a half now and is

> > adjusting fairly well. But, like other members, I have concerns

> > about fit and methods of monitoring correction. Adjustments are

> once

> > a month, as are appts with the doc. I asked the ortho how he

> > monitors progress and he said, " I just look at the inside of the

> > helmet and I can tell " . He also said the inside liner changes

> color

> > over time and that also shows him if the baby's head is

growing.

> Are

> > these common methods? How do others monitor correction? The

ortho

> > says he himself does not do measurements, only the doc does.

> > However, no one measured Kathan's head right before he started

> helmet

> > therapy, and it had been 7 weeks since his first appt. I tried

to

> > repo him in the meantime (he had been receiving PT for his tort,

> > which helped this process) and felt there had been some

> improvement,

> > but since no one re-measured his head, I am not sure. I now

regret

> I

> > did not take pics. Is it common not to measure again if a long

> time-

> > frame has elapsed before beginning treatment? Also, Kathan has

red

> > marks on his forehead, where he has bossing, but I have never

seen

> > any red marks on the non-flat side, so I'm not sure if this is a

> > concern. (The ortho say it is not)

> >

> > Sorry for the long history and the many questions. I thank you

all

> > for any thoughts you may have. Also, is anyone out there from

> > Chicagoland? Please let me know. Thanks so much.

> >

> > Sincerely,

> >

> > Rekha

>

>

>

> For more plagio info