Re: Determining Misalignment

[Guest guest]

Mark, When my son was seen by neuro, there

were no measurements taken either. We, too, were given the choice to treat or

not. We figured we had nothing to loose if my son wore helmet. At that point,

we were only a little concerned if ins would pay. We were willing to pay

out-of-pocket. He has been in helmet for 9wks on Thurs. I am glad we said

YES! My son only had x-rays of spine and all was OK. We had the advice of

ped and neuro. As for the stares, yes it is very difficult. I, too,

try to talk about his condition to as many people possible. I would hate to

see any more parents lose precious and valuable time due to Drs that do not

feel treatment is need. Belinda (Indiana)

[Guest guest]

, I DID NOT trust the ped that told us nothing was wrong. I

discovered the " lump " in neck when he was 2wks old. This thing was as big as

my pinky. That seemed very big for such a young child. We kept an eye on him

as we were instructed to do by this Dr. The older he got, the more we noticed

he would not turn to the left. We had also noticed he was not using his left

arm. Even after this, the Dr still said not to worry. At that point I had

requested a referral for evaluation at one of the universities in Chicago. He

bascially refused and that was when I took drastic measures and changed peds.

We pretty much " lost " 2 months worth of treatment time!!!!! I wish we had not

waited. When we changed Drs, I requested the med records of office visits.

The only time anything was mentioned was when my son was examined at 2 wks

when I found lump. All that was written was " lump below ear.' " I pestered DR

about these concerns and nothing was ever noted. I guess he really did not

suspect a thing. The more I researched, the more info I found on these

conditions. I don't feel this would have " corrected itself. " Sorry this is

so long but we have been through so much because of this incompetent DR.

Belinda

[Guest guest]

Hi there, Mark!

Grace's cranio doc didn't exactly get out the calipers with her measurements either. I just took it for granted that once he determined the sutures were ok (through a CT scan), the asymmetry was obvious enough for him to suggest further treatment.

Often-times the second opinions we seek are for a doctor that is willing to DO something about the plagiocephaly...not so much finding out whether it's bad enough to warrant something done. Are the ped. and plastic surgeon in agreement? If they are, I would certainly go with it. If they differ in opinion, you might just have to make the final decision.

It's such a harmless, painless treatment. As long as you are able to get a good fit, the only drawback would be money (if it's not covered) and travel (if you are far from the clinic). Those are definitely things to consider, but.....Well, I'm starting to nag.

C./subscribe/Plagiocephaly

----- Original Message -----

From: Mark

Plagiocephalyonelist

Sent: Sunday, March 12, 2000 11:14 PM

Subject: Determining Misalignment

From: "Mark " <mhennemann@...> Hello,Just wondering how other neurosurgeons assessed your child. We havebeen talking about our visit that day and we are concerned becausethere were no "meausurements" taken other than head circumference. Also had X-rays of skull, but amount of misalignment was neverdiscussed. We were just told our 6 mo old son has a "moderate" caseof Plagio. Trying to decide if the DOC Band is necessary for ourchild. This has to be one of the hardest decisions we've ever had tomake! Did most of you get second opinions? We have the advice of 1Pediatrician and 1 Plastic Surgeon. Is this enough or are we justbeing too cautious?Mark

3x + / wk 1-2x / wk 0-1x / wk

[Guest guest]

What made you say YES? I think we may be there soon as far as having to

make a decision. My husband trusts the Pediatrician who said not to worry.

He said he has mild to moderate deformation.

What kind of information does anyone have out there to disprove the

Pediatrician? Does anyone know of children whose conditions did not

correct themselves?

Thanks,

At 05:26 PM 3/13/00 -0500, you wrote:

>From: bgles2@...

>

>Mark, When my son was seen by neuro, there

>were no measurements taken either. We, too, were given the choice to treat or

>not. We figured we had nothing to loose if my son wore helmet. At that point,

>we were only a little concerned if ins would pay. We were willing to pay

>out-of-pocket. He has been in helmet for 9wks on Thurs. I am glad we said

>YES! My son only had x-rays of spine and all was OK. We had the advice of

>ped and neuro. As for the stares, yes it is very difficult. I, too,

>try to talk about his condition to as many people possible. I would hate to

>see any more parents lose precious and valuable time due to Drs that do not

>feel treatment is need. Belinda (Indiana)

>

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>

[Guest guest]

Hey !

Have you checked out the Links section at the website? You might find some information there you can use.

C./subscribe/Plagiocephaly

----- Original Message -----

From: Paquin

Plagiocephalyonelist

Sent: Monday, March 13, 2000 9:27 PM

Subject: Re: Determining Misalignment

From: Paquin <lpaquin@...> What made you say YES? I think we may be there soon as far as having tomake a decision. My husband trusts the Pediatrician who said not to worry.He said he has mild to moderate deformation.What kind of information does anyone have out there to disprove thePediatrician? Does anyone know of children whose conditions did notcorrect themselves?Thanks,At 05:26 PM 3/13/00 -0500, you wrote:>From: bgles2@...>>Mark, When my son was seen by neuro, there >were no measurements taken either. We, too, were given the choice to treat or >not. We figured we had nothing to loose if my son wore helmet. At that point, >we were only a little concerned if ins would pay. We were willing to pay >out-of-pocket. He has been in helmet for 9wks on Thurs. I am glad we said >YES! My son only had x-rays of spine and all was OK. We had the advice of >ped and neuro. As for the stares, yes it is very difficult. I, too, >try to talk about his condition to as many people possible. I would hate to >see any more parents lose precious and valuable time due to Drs that do not >feel treatment is need. Belinda (Indiana)>>------------------------------------------------------------------------>DON'T HATE YOUR RATE!>Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees.>Apply NOW!>1/2120/2/_/689409/_/952986537/>------------------------------------------------------------------------>>To unsubscribe, go to > >

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