Skeptics

[Guest guest]

We have just started telling people about Evan's helmet, which we

will

get next week. Most people have been very interested and very

supportive. Yesterday, I

talked to Evan's sitter about all this. On the one hand she was

supportive, agreeing that you have to follow your gut when in comes

to

your child, you have to do everything you can, etc. But she also

made

some comments like, " oh, his head will even out on it's own " and she

was telling me how her little boy had a flat spot on his head until

he

was 2. Our sitter is great, we really like her, so I was kinda

bummed

that she seemed skeptical of Evan's diagnoisis and upcoming

treatment.

How do you tactfully respond to people who clearly think you are a

crackpot for believing a plagio diagnosis and going through with the

treatment? I'm sure this is not the last time I will deal with this

issue!

I'm also sure this has been discussed by the group before but I don't

have time to sift

through all the previous messages. Any advice would be appreciated!

Sharon

[Guest guest]

Sharon,

I'm sure your babysitter did not mean to offend you in anyway. If

she is as good as you say, it was just her lack of knowledge

speaking. Also it has been a phrase for ages " it will round out " .

This is all new to a lot of people, I mean some Dr's don't know much

about it. What I do with my sitter is share just about everything

with her, so she knows where all my thoughts are from. Plus I think

everyone needs to know about the growing concern for this.

I also have some problems with a family member because I am still

researching all aspects of this. They actually think I am going to

make my self sick and then not be any good for my son. I just tell

them my prayers have been answered that the sutures are still open,

but I still have to work on the matter of his head shape and neck

muscle. I would never allow myself to get run down by this. You got

do what you gotta do! He is the most important person to both my

husband and I and we have to pursue all angles.

By the way yesterday as I was going thru the files on the site I saw

letters written to the American Pediatrics. Did they ever respond?

I'm thinking of bringing a copy to the hospital where I delivered and

inform the nurses that gave the pre-natal classes. This matter has

to be addressed and info put out there for the new moms to be.

Sharon you are doing a great job and god bless you all!

[Guest guest]

:

I'm not sure if there was a response to the letter, but I can tell you

that the AAP has changed their view on the Back to Sleep program.

Of course babies are still to be put to sleep on their backs (you can't

deny that it has saved lives), but they have also put in writing that babies

should be repositioned while sleeping, and that they should have supervised

tummy time while awake.

An article was recently written in our local newspaper. They made

a new slogan.....

"Back to Sleep, Tummy to play"

I think that says it all! Tummy time is so important in so many

ways!

Here is the link to AAP,

so you can read their new statement.

Kendra

kpolencheck@... wrote:

Sharon,

I'm sure your babysitter did not mean to offend you in anyway.

If

she is as good as you say, it was just her lack of knowledge

speaking. Also it has been a phrase for ages "it will round

out".

This is all new to a lot of people, I mean some Dr's don't know

much

about it. What I do with my sitter is share just about everything

with her, so she knows where all my thoughts are from. Plus

I think

everyone needs to know about the growing concern for this.

I also have some problems with a family member because I am still

researching all aspects of this. They actually think I am

going to

make my self sick and then not be any good for my son. I

just tell

them my prayers have been answered that the sutures are still open,

but I still have to work on the matter of his head shape and neck

muscle. I would never allow myself to get run down by this.

You got

do what you gotta do! He is the most important person to

both my

husband and I and we have to pursue all angles.

By the way yesterday as I was going thru the files on the site I

saw

letters written to the American Pediatrics. Did they ever

respond?

I'm thinking of bringing a copy to the hospital where I delivered

and

inform the nurses that gave the pre-natal classes. This matter

has

to be addressed and info put out there for the new moms to be.

Sharon you are doing a great job and god bless you all!

[Guest guest]

Holli

You were so smart to join the study! I hope the kids don't have CMT but of

they do and you ever have a CMT issue with the ex husband you have something

to show the court. Your son grabbing your hand and the step moms hand was just

to sweet. I hope the step mom doesn't have to learn compassion the hard way.

Over the years it seems like people that have been hard on me get something

minor and freak out. Then they call me and wonder how I do it.

[Guest guest]

Holli,

I am so sorry that you have to put up with that! I'm at least happy for

you that he is your ex! I really quickly wanted to ask how you found

the study? Also for anyone to answer from the group, I am really new at

CMT because it's on my husband's side and we just found out that he and

my daughter (so far, the other kids might too) have it.

What do you mean about the insurance company not needing to know about it? How

do I take my husband and daughter to the doctor for it and not let the insurance

company know? I want to protect their future so any direction would be great.

Thanks,

Jen