New here and at wit's end

[Guest guest]

Hi everyone,

I am so glad to have found this group and the torticollis group. I hope

this post doesn't get too long but I am at my wit's end and don't know

what to do with my poor baby.

My name is Sheila and I have 4 kids ages 11, 9, 6, and 5 months, plus 2

stepkids. My 5 month old (a girl who we named Amaya) had a rather

traumatic birth and was diagnosed with torticollis and plagiocephaly at

her 4 month check-up in June. I had noticed the tort. much sooner and

mentioned it to her pediatrician at her 2 month check-up but she said

" well let's just wait and see " . See what? I'd like to know. How much

worse it can get? Anyway...I began massages on the short muscle and

doing positioning techniques I read about, starting at about 2 months,

with poor results, because she has a large cavernous hemangioma

affecting the neck muscle on the tort side. By the time her 4 month

appointment rolled around, the " flat spot " on the other side of her head

was VERY VERY prominent and had me **greatly** concerned. Also, her

right ear is pushed way far forward and her right eye looks so much

bigger, and she has had jaw problems. My poor baby :-(

So.....the pediatrician ordered skull x-rays on June 19th. And that was

hell. They took 9 x-rays that day, then called me 5 days later and said

they weren't the right views, so I had to bring her back and they took

16 more. And now I'm concerned about all that radiation as well...but

that's a whole 'nother story.

The dr. called us on June 30th with the official diagnosis of

plagiocephaly, but said " Let's just see how it looks at her 6 month

check-up, and in the meantime get physical therapy for the torticollis. "

Does this seem odd? To me it seems very passive, but maybe I am just

overeacting.

I called physical therapy and they can't even get her in until August

22nd, at which time she will be 6 months old. To ME, time is of the

essence, but to THEM...I guess it doesn't matter. So what should I be

doing in the meantime? I keep her sitting upright or on her tummy as

much as possible, and I always place her so that her toys, tv. people,

whatever are on her left side so she HAS to turn her head the other way,

and I put her in a side sleeper at night but she always manages to twist

herself back around to her favored position. I feel like the worst

mother in the world just sitting here watching it all get worse day by

day, not knowing what to do. I want action taken and I want it NOW...but

everyone " in charge " of the situation seems so careless about it. Should

I look for a different dr.?

And now....here's another dilemma. My husband lost his job back in May

and our insurance ran out May 31st. We can continue it through COBRA for

18 months, but they want us to come up with $1218 by August 1st and I

don't see how we will possibly be able to do so. We live paycheck to

paycheck. If I were still working maybe we'd be able to swing it, but I

quit working when pregnancy complications began with Amaya, and now

daycare would be more than I could make. My husband has a new job but

they don't have medical insurance. We applied for the state's program,

but we make about $500 too much per month. What the hell are we going to

do!??! I was concerned about coming up with $20 co-payments for all

those PT sessions...now we may not even be able to go at all. I'm just

sick about this. We're waiting to hear back from our banker for a

consolidation loan for this and some other stuff - PLEASE keep your

fingers crossed for us, that we get approved!! Otherwise, are there any

resources I may be unaware of??

What would you do in my shoes? My poor sweet little girl :-(

I feel so darn helpless and the hopelessness is starting to niggle in

too. :-(

~Sheila