Re: Tough Day

February 17, 2002

Wow, you sure did have rotten day - I'm so sorry about all the scary

and bad information you got. Craniosynostosis can not be diagnosed

w/o a CT scan or Xrays (CTscans the best way though). The neuro

could suspect cranio w/o the tests, but there's no way to be 100%

sure w/o the tests. Has he recommended you get a CTscan done? Of

course all this happened on a Sat so you have to wait 2 days before

you can get any details. Uggg.

Brachy cases usually do not have any assymetries -maybe only slight.

So I am surprised the PT said it is the hardest to correct. And

is just 7 mos old so I would think he'd still get good

correction. Assymetries are often the hardest part to correct.

Do NOT beat yourself up for 's head shape. You did everything

correct by sleeping him on his back. This just happens for no good

reason! None of us are bad parents for listening to the so

called " experts " and doing everything we could do to prevent SIDS.

I hope you're feeling better today. Believe me, we've all had those

crappy days where all you want to do is sit down & cry. And

traveling 6 hrs one way is not going to help you feel any better - I

know. Wow was I ever a bear after our trips to Chicago & back with

Abby last year. Hubby knew to leave me alone for at least 1 hr after

we ret'd. Hehe.

Let us know what the neuro says if you call Monday. Good luck.

Debbie Abby's mom DOCGrad

MI

> Hi Everyone,

> We went for our initial consultation at One Step Ahead in Mayfield

OH

> regarding getting 's DOC Band. Well, when we got there the PT

> said that our neurosurgeon had written craniosynostois on the

> order. She was concerned about this because the band is contra-

> indicated for cranio. I don't understand this because has not

> yet had his CAT scan, and I thought that was the only way to

> diagnosis cranio. I got very worried that maybe he suspected

cranio

> instead of plagio. Can they tell without a CT? I'm very upset

about

> it and just have to stew since I can't call his office until

Monday.

> The PT at One Step Ahead tried re-assure us that the neurosurgeon

> wouldn't be able to tell if crano without a CAT scan. But

then

> why would he write that on the order?

>

> It was just a really bad day all around. Almost six hours on the

> road! It was too much, I think we will be staying over from now

on.

> Add hotel costs onto our final bill! We are exhausted and it seems

> like we got nothing but bad news all day. The PT said that

has

> bracy and that his head shape is one of the hardest to correct. WE

> should expect two bands and might get only a 50% correction. I

> anticipated higher correction since he is only 7 months. She also

> told us that she has never seen our insurance cover the DOC band.

> Wonderful!!!!! She also felt that we should get him into physical

> therapy because he is not sitting up on his own at almost seven

> months. She attributed that to not having enough tummy time to

> strengthen his back. Why didn't our ped. pick up on weak muscles

and

> recommend some physical therapy earlier? Of course they we the

ones

> telling us his head would round out on its own so I guess I

shouldn't

> be surprised. I have felt so let down by the medical community

> lately. Just when I thought I was coming to terms with my guilty

> feelings about all of this, another wave hit me really hard while

we

> were there today. It was all I could do not to cry during our

> meeting. The PT was trying to be helpful but after all that bad

news

> she had lost me by that point. She was very nice, and very

> knowledgable, but I got the feeling that she had lost touch with

how

> hard this can be on parents when it is all new to them. I wish so

> bad that I had never taken lamaze classes. They were the ones that

> scared us so bad about SIDS that we were terrified to even put

> on his stomach for naps during the day. Even though no one warned

us

> about plagio, or stressed the importance of tummy time, I feel like

I

> should have somehow known and that ultimately it is my fault. I

just

> don't understand why this all has to be so hard? All I ever wanted

> was what was best for my baby. So jealous of people that have

babies

> with perfect little round heads right now. I'm sure I will feel

> better in the morning. Right now I'm tired, overwhelmed, and having

a

> pity party for myself. Sorry about that, and thanks for listening.

> ps sorry this is so long

February 17, 2002

hi s mom, Pease try not to worry util they give you a the

result which I'n sure will be negative( fingers crossed). I was sent

to many tests and they were all negative, now I try to not worry

ahead of myself.

As with listening to the physical therapist... I would only pay

attention to a good neurosurgeon on the Doc clinic, they are exsperts

in this field, not someone who's dealt with a few patients.. not that

she means ill will.

The Insurances lately have been doing alot better at paying for

these and you may have to be pushed but they can be paid for. We got

our paid 100% and the Doc centre said our Ins was hard to get to pay

(UHC of FL).

I was suprised you had been told that Bracio was harder to fix,

at least without full correction the hair covers this. My daughter is

nealy 3 and a Doc grad without full correction because I started too

late, her hair cover all her mis shaped head.

The last thing with the lamase classes and back to sleep. I did

the same exact thing with my first child and shes a perfect round

head... its not you at all. My second daughter was born with a

deformed head but I was in the corner of " it rounds out on it own "

until it dident with aggresive re positioning.I am not blaming myself

for any of her problems but I wish I started sooner with her

treatment.

Good luck Lorraine.Mackenzies mom, Boca Raton FL.