Re: Upset mom here

[Guest guest]

Aaahhh

Gosh it is horrible to hear these stories. ( I'm sorry that this

child did not get treatment when it was needed. His Mom might

benefit from joining the older plagio board. I'm not sure what / if

anything can be done for this little boy. Do you like a kitKat bar?

That's all I have here. )

Sandy Willow's Mom

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Today I met a 2 1/2 yr old boy with severe plagio. His face was so

> asymmetrical that every time he changed facial expression, you did

a

> double-take. He is already having jaw problems, to the point that

he

> seemed a little thin (might just be his build, but I didn't think

so)

> and has speech delays. He has a flat spot on the back of his head

you

> could land a plane on. The worse part is, he already knows he looks

> different! I was videotaping the kids playing, and they were all

> having a wonderful time, but he would turn away from the camera

every

> time I turned it on him. He stopped playing and went and stood in a

> corner. I nearly started crying.

>

> His mom had taken him to Seattle Children's numerous times and they

> blew her off. By the time she got them to admit she was right, he

was

> 18 mos and it was too late (they only use passive Clarren there).

>

> I am just sick about this. This is the 3rd mom I have talked to

> recently who was told by Children's craniofacial there wasn't a

> problem, or the baby looked fine, or didn't need treatment. My baby

> got treatment because I didn't wait for the craniofacial

appointment

> at Children's. What are all these moms to do? Seattle Children's is

a

> respected hospital, but the plagio department bites. It's like

having

> a luxury hotel with an outhouse. Is there anything a regular Jane

can

> do to change this?

>

> Sigh. I'm too upset to sleep. Just thought I'd share my trauma. If

> anyone has a chocolate bar I could have, please stuff it in your CD

> drive and hit " SEND " and I'm sure I will get it. Thanks.

>

>

> , 20 mos

[Guest guest]

I am sick with you! I have few m & m's left from the FOURTEEN ounce

bag I bought on Friday. But back to your post...would you consider

writing a letter to Children's? I think I am going to be writing some

letters (to my peds office - 6 Dr.'s - and the hospital where I

delivered). This craziness has to stop. What the heck is wrong with

these so-called experts?? Helmet therapy is not that big of a deal to

pursue if needed (but ideally PREVENTION, if possible, would be

Best). Argh!! I am on your soap box with you along with everyone

else here I imagine...

Sue

Colin F. 10 mos.

Starband 6/29

Buffalo, NY

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Today I met a 2 1/2 yr old boy with severe plagio. His face was so

> asymmetrical that every time he changed facial expression, you did

a

> double-take. He is already having jaw problems, to the point that

he

> seemed a little thin (might just be his build, but I didn't think

so)

> and has speech delays. He has a flat spot on the back of his head

you

> could land a plane on. The worse part is, he already knows he looks

> different! I was videotaping the kids playing, and they were all

> having a wonderful time, but he would turn away from the camera

every

> time I turned it on him. He stopped playing and went and stood in a

> corner. I nearly started crying.

>

> His mom had taken him to Seattle Children's numerous times and they

> blew her off. By the time she got them to admit she was right, he

was

> 18 mos and it was too late (they only use passive Clarren there).

>

> I am just sick about this. This is the 3rd mom I have talked to

> recently who was told by Children's craniofacial there wasn't a

> problem, or the baby looked fine, or didn't need treatment. My baby

> got treatment because I didn't wait for the craniofacial

appointment

> at Children's. What are all these moms to do? Seattle Children's is

a

> respected hospital, but the plagio department bites. It's like

having

> a luxury hotel with an outhouse. Is there anything a regular Jane

can

> do to change this?

>

> Sigh. I'm too upset to sleep. Just thought I'd share my trauma. If

> anyone has a chocolate bar I could have, please stuff it in your CD

> drive and hit " SEND " and I'm sure I will get it. Thanks.

>

>

> , 20 mos

[Guest guest]

Wow, that upsets and shocks me. My son has had such wonderful

results from the Clarren, but he was diagnosed at 4 mos. and had to

wait until 6 mos. to start. His plagio wasn't considered severe,

but no one questioned the referral from my pediatrician when we had

our appointment there. I never felt like I had to convince anyone

that needed the treatment (feel free to check out his before

pictures under in Our Plagio Kids). They left it up to me

to choose between repo and helmet treatment. I actually had a

harder time getting started on PT for his toricollis in a timely

manner. But obviously my experience hasn't been the case for

everyone. Do you know who this mother spoke with at Children's?

The other moms I know all spoke with Darcy, who was the same person

who initally diagnosed .

has a docband, right? Where are you located? If you are in

Seattle, you must have had to travel pretty far. Was it because you

couldn't get an appointment right away at Childrens, or didn't want

to wait until 6 mos to start? I'm just curious. Good for you for

taking the initiative to do what's best for your baby!

Gail

11 mos, - 5 mos. in Clarren (almost done!)

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Today I met a 2 1/2 yr old boy with severe plagio. His face was so

> asymmetrical that every time he changed facial expression, you did

a

> double-take. He is already having jaw problems, to the point that

he

> seemed a little thin (might just be his build, but I didn't think

so)

> and has speech delays. He has a flat spot on the back of his head

you

> could land a plane on. The worse part is, he already knows he

looks

> different! I was videotaping the kids playing, and they were all

> having a wonderful time, but he would turn away from the camera

every

> time I turned it on him. He stopped playing and went and stood in

a

> corner. I nearly started crying.

>

> His mom had taken him to Seattle Children's numerous times and

they

> blew her off. By the time she got them to admit she was right, he

was

> 18 mos and it was too late (they only use passive Clarren there).

>

> I am just sick about this. This is the 3rd mom I have talked to

> recently who was told by Children's craniofacial there wasn't a

> problem, or the baby looked fine, or didn't need treatment. My

baby

> got treatment because I didn't wait for the craniofacial

appointment

> at Children's. What are all these moms to do? Seattle Children's

is a

> respected hospital, but the plagio department bites. It's like

having

> a luxury hotel with an outhouse. Is there anything a regular Jane

can

> do to change this?

>

> Sigh. I'm too upset to sleep. Just thought I'd share my trauma. If

> anyone has a chocolate bar I could have, please stuff it in your

CD

> drive and hit " SEND " and I'm sure I will get it. Thanks.

>

>

> , 20 mos

[Guest guest]

Hi

I can see that would be really upsetting- I see children like that

all the time in the UK as very few children receive helmets and they

are not available on the NHS, which provides 99% of everyone's

medical treatments. I find it very difficult to know what to say or

how to help, given the complete ignorance about this.

I see you've received some really good suggestions about how to

change things. I was a little inspired by these earlier in the day,

and when I took my daughter for her eight month developmental check,

she wore her helmet and I told the health visitor all about it. I

was intending not to take her with it on, or tell her, as I had not

received any positive feedback in the first place, she more or less

dismissed my concerns, and I didn't want a confrontation about what

I had decided to do. Then I thought, if she never hears about this,

she'll carry on in ignornce. I have to say I don't think she was

very receptive anyway- but as least I felt like I'd done my bit at

grassroots level. So thanks for a bit of a kick up the backside and

making me stick my neck out!

It bothers me to hear that a 2 1/2 year old child is already

concerned with his differences (it sounds like it was not just the

plagio). Plenty of children have something 'different' about them at

that age, ranging from a squint to serious disabilities. That should

be an age when children are feeling good about themselves and

confident to put themselves out there. In the UK, children with

disabilites are in mainstream education, my mum teaches children

with all kinds of differences alongside regular kids (whatever they

are anyway) and even at 4 and 5 children can be pretty accepting,

and accepted, if things are handled correctly. And plenty of kids

with problems are still happy and confident. That he should have

picked up negativity so early about something which, though not

great, is by no means the worst disfigurement to have is, I agree,

very upsetting and very concerning.

You sound like a totally great campaigner for the cause- keep it up!

Hannah ( mum to Lucia, London, UK)

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Today I met a 2 1/2 yr old boy with severe plagio. His face was so

> asymmetrical that every time he changed facial expression, you did

a

> double-take. He is already having jaw problems, to the point that

he

> seemed a little thin (might just be his build, but I didn't think

so)

> and has speech delays. He has a flat spot on the back of his head

you

> could land a plane on. The worse part is, he already knows he

looks

> different! I was videotaping the kids playing, and they were all

> having a wonderful time, but he would turn away from the camera

every

> time I turned it on him. He stopped playing and went and stood in

a

> corner. I nearly started crying.

>

> His mom had taken him to Seattle Children's numerous times and

they

> blew her off. By the time she got them to admit she was right, he

was

> 18 mos and it was too late (they only use passive Clarren there).

>

> I am just sick about this. This is the 3rd mom I have talked to

> recently who was told by Children's craniofacial there wasn't a

> problem, or the baby looked fine, or didn't need treatment. My

baby

> got treatment because I didn't wait for the craniofacial

appointment

> at Children's. What are all these moms to do? Seattle Children's

is a

> respected hospital, but the plagio department bites. It's like

having

> a luxury hotel with an outhouse. Is there anything a regular Jane

can

> do to change this?

>

> Sigh. I'm too upset to sleep. Just thought I'd share my trauma. If

> anyone has a chocolate bar I could have, please stuff it in your

CD

> drive and hit " SEND " and I'm sure I will get it. Thanks.

>

>

> , 20 mos

[Guest guest]

Hi ,

That is really awful!! I don't understand how the doctors can be so

blind. It is so sad that he will be stuck with this disfigurement

because no-one informs parents about the problems that can occur

with backsleeping, how unneccessary! Did you meet his mother? If I

were her I would be sooo stressed out about it! This is so so

terrible. I didn't really want to believe that children were being

left with such severe plagio. I have only seen one affected child

myself, he is about 3 years old and he has brachy quite badly. His

mother described him as having a square head (!) I don't know if she

realizes the cause of it. However, his face is fine, no assymetry

so that's good. It is just flat and squared off at the back.

I hope these children's headshape problems become less noticeable as

they get older. To be honest I have really lost respect for

pediatricians and doctors - this is the second medical issue that

they have been vague about concerning my son. It is only because I

did my own research (on both issues) that my son got the proper care

he needed and all is basically okay. However, both problems would

have been better dealt with at the earliest age possible but of

course no-one told me...

Sorry, just venting I guess,

Janice

--- In Plagiocephaly , " tortibaby " <sugrill@j...>

wrote:

> Today I met a 2 1/2 yr old boy with severe plagio. His face was so

> asymmetrical that every time he changed facial expression, you did

a

> double-take. He is already having jaw problems, to the point that

he

> seemed a little thin (might just be his build, but I didn't think

so)

> and has speech delays. He has a flat spot on the back of his head

you

> could land a plane on. The worse part is, he already knows he

looks

> different! I was videotaping the kids playing, and they were all

> having a wonderful time, but he would turn away from the camera

every

> time I turned it on him. He stopped playing and went and stood in

a

> corner. I nearly started crying.

>

> His mom had taken him to Seattle Children's numerous times and

they

> blew her off. By the time she got them to admit she was right, he

was

> 18 mos and it was too late (they only use passive Clarren there).

>

> I am just sick about this. This is the 3rd mom I have talked to

> recently who was told by Children's craniofacial there wasn't a

> problem, or the baby looked fine, or didn't need treatment. My

baby

> got treatment because I didn't wait for the craniofacial

appointment

> at Children's. What are all these moms to do? Seattle Children's

is a

> respected hospital, but the plagio department bites. It's like

having

> a luxury hotel with an outhouse. Is there anything a regular Jane

can

> do to change this?

>

> Sigh. I'm too upset to sleep. Just thought I'd share my trauma. If

> anyone has a chocolate bar I could have, please stuff it in your

CD

> drive and hit " SEND " and I'm sure I will get it. Thanks.

>

>

> , 20 mos