Re: Saw a 16 month boy with severe plagio/brachy today at the park

[Guest guest]

Typically you won't be able to get a band after 18 month unless your

willing to fight for it.

Btw things sometimes look worse than they are, my sons ears looked a

good inch off in 2 different directions meaning the one was a good

inch forward and an inch lower, the ear was even tilted. It scarily

reminded me of the guy in goonies (though he was adorable and wasn't

that bad but still that was my vision of a grown up version) but when

measured his ears were only 17 mm assymetry which is 1.7 cm so not

even an inch. However that does fall under severe. And as for brachy

I actually have a friend whose son actually had very severe brachy and

he started at 4 month, he wore FOUR docbands, I have never heard of

anyone else to have so many and he still didn't get it completely gone

(he was still being treated for tort when he finished) as I could

still see it after treatment and he tried cst and chiro during

treatment (though now 2 yrs post band I don't ee it) so this late the

boy may not even be able to get total correction.

However with ear assymetry it has to be worth a shot. Has the lady

never tried to put a hat or sunglasses on him? I mean when my son

wore unglasses they didn't even it on both ears, if uyou adjusted them

so they did he had 1 completely visible eyebrow and one completely

covered by the glasses, they were that crooked. With a hat 1 ear was

never covered like the other, etc

Its hard to hear but I wouldn't be so quick to say he won't get help.

She may go home and have your words haunt her so she eventually talks

to her husband to feel better. Then they may google or specifically

ask the doctor. That's the hard part, some doctors will just say it

will round out on its own. Hopefully if she asks the doctor it turns

out her doctor was just clueless (as was mine) and looks into it and

gets her started (as mine did and now knows so can watch for it as do

the others in the practice from seeing my sons band for so long and

the results).

On 3/4/10, F <jen440@...> wrote:

> Hi,

>

> I saw a 16 month old boy with severe plagio/brachy at the park today in

> Santa , CA. It was the worst case I have ever seen in person. It was

> sad because he was such a good-looking little boy.

>

> I spoke to the mother about my twins and how successful their helmets had

> been, and said that her child reminded me of them before treatment. The

> atmosphere turned so cold I almost needed a sweater! She was very very cold

> and resistant. She said, " The pediatrician never said anything " . I said,

> " They usually don't! " She wasn't rude but obviously did NOT want to hear

> what I was saying and probably won't do anything about it.

>

> If my kid was 10 mm plagio, hers had to be 30mm or more. If my kid was 96

> percent brachy, hers has to be 102 or more. His ears were about 1-2 inches

> off! I just couldn't believe she hadn't noticed and I wished there were

> something else I could have said or done to help her baby.

>

> Anyone else ever have that experience? I might see her again at this park

> and I hope there is some way I can help. At 16 months she doesn't have much

> time.

>

> How much time does she have to pursue treatment?

>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!

[Guest guest]

That's so sad!  If you see her again, maybe you can gently mention it again.  Even if she started now and didn't get a complete correction, it would still help some.  Maybe make it less noticeable.  Maybe you  can mention the urgency of starting now and offer some hope of it getting a little better.  But time is running out  for her son.  I'm so upset that some pediatricians are not aware of this or think it will just " round out! "  My son's pediatrician wasn't even concerned or didn't even warn me to keep an eye on plagio when I kept mentioning that he turns his head to the right all the time.  He was almost like an owl!  By the time I noticed it was already affecting his facial features.  Anyway, good luck and if you happen to see her again, let us know what happened.

On Thu, Mar 4, 2010 at 8:07 AM, Durocher <funwith4@...> wrote:

 

Typically you won't be able to get a band after 18 month unless your

willing to fight for it.

Btw things sometimes look worse than they are, my sons ears looked a

good inch off in 2 different directions meaning the one was a good

inch forward and an inch lower, the ear was even tilted. It scarily

reminded me of the guy in goonies (though he was adorable and wasn't

that bad but still that was my vision of a grown up version) but when

measured his ears were only 17 mm assymetry which is 1.7 cm so not

even an inch. However that does fall under severe. And as for brachy

I actually have a friend whose son actually had very severe brachy and

he started at 4 month, he wore FOUR docbands, I have never heard of

anyone else to have so many and he still didn't get it completely gone

(he was still being treated for tort when he finished) as I could

still see it after treatment and he tried cst and chiro during

treatment (though now 2 yrs post band I don't ee it) so this late the

boy may not even be able to get total correction.

However with ear assymetry it has to be worth a shot. Has the lady

never tried to put a hat or sunglasses on him? I mean when my son

wore unglasses they didn't even it on both ears, if uyou adjusted them

so they did he had 1 completely visible eyebrow and one completely

covered by the glasses, they were that crooked. With a hat 1 ear was

never covered like the other, etc

Its hard to hear but I wouldn't be so quick to say he won't get help.

She may go home and have your words haunt her so she eventually talks

to her husband to feel better. Then they may google or specifically

ask the doctor. That's the hard part, some doctors will just say it

will round out on its own. Hopefully if she asks the doctor it turns

out her doctor was just clueless (as was mine) and looks into it and

gets her started (as mine did and now knows so can watch for it as do

the others in the practice from seeing my sons band for so long and

the results).

On 3/4/10, F <jen440@...> wrote:

> Hi,

>

> I saw a 16 month old boy with severe plagio/brachy at the park today in

> Santa , CA. It was the worst case I have ever seen in person. It was

> sad because he was such a good-looking little boy.

>

> I spoke to the mother about my twins and how successful their helmets had

> been, and said that her child reminded me of them before treatment. The

> atmosphere turned so cold I almost needed a sweater! She was very very cold

> and resistant. She said, " The pediatrician never said anything " . I said,

> " They usually don't! " She wasn't rude but obviously did NOT want to hear

> what I was saying and probably won't do anything about it.

>

> If my kid was 10 mm plagio, hers had to be 30mm or more. If my kid was 96

> percent brachy, hers has to be 102 or more. His ears were about 1-2 inches

> off! I just couldn't believe she hadn't noticed and I wished there were

> something else I could have said or done to help her baby.

>

> Anyone else ever have that experience? I might see her again at this park

> and I hope there is some way I can help. At 16 months she doesn't have much

> time.

>

> How much time does she have to pursue treatment?

>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!

[Guest guest]

Totally agree!  Particulary your message about the pediatrician.  My daughter is 4-months old today and I mentioned her irregular head shape to my pediatrian 2 months ago and she shrugged it off!  Said that I should just press her head myself; that it will correct itself and I have a year until her head is at its final shape.  Even said: " Some parents spend all this money on expensive helmets for cosmetic reasons. " Now she appears to have severe plagio. I think plagio should be built-in component of prenatal education. In any case, the decision to get the helmet is of course a private family matter, however it is quite unnerving how often I'm reading about other parents who notice irregularities with the shape of their child's head and are not really getting the guidance/support from their pediatricians.  hmm--what am I paying you for?

 

On Thu, Mar 4, 2010 at 9:49 AM, Rapp <rapptk@...> wrote:

 

That's so sad!  If you see her again, maybe you can gently mention it again.  Even if she started now and didn't get a complete correction, it would still help some.  Maybe make it less noticeable.  Maybe you  can mention the urgency of starting now and offer some hope of it getting a little better.  But time is running out  for her son.  I'm so upset that some pediatricians are not aware of this or think it will just " round out! "  My son's pediatrician wasn't even concerned or didn't even warn me to keep an eye on plagio when I kept mentioning that he turns his head to the right all the time.  He was almost like an owl!  By the time I noticed it was already affecting his facial features.  Anyway, good luck and if you happen to see her again, let us know what happened.

On Thu, Mar 4, 2010 at 8:07 AM, Durocher <funwith4@...> wrote:

 

Typically you won't be able to get a band after 18 month unless yourwilling to fight for it.Btw things sometimes look worse than they are, my sons ears looked agood inch off in 2 different directions meaning the one was a good

inch forward and an inch lower, the ear was even tilted. It scarilyreminded me of the guy in goonies (though he was adorable and wasn'tthat bad but still that was my vision of a grown up version) but whenmeasured his ears were only 17 mm assymetry which is 1.7 cm so not

even an inch. However that does fall under severe. And as for brachyI actually have a friend whose son actually had very severe brachy andhe started at 4 month, he wore FOUR docbands, I have never heard ofanyone else to have so many and he still didn't get it completely gone

(he was still being treated for tort when he finished) as I couldstill see it after treatment and he tried cst and chiro duringtreatment (though now 2 yrs post band I don't ee it) so this late theboy may not even be able to get total correction.

However with ear assymetry it has to be worth a shot. Has the ladynever tried to put a hat or sunglasses on him? I mean when my sonwore unglasses they didn't even it on both ears, if uyou adjusted them

so they did he had 1 completely visible eyebrow and one completelycovered by the glasses, they were that crooked. With a hat 1 ear wasnever covered like the other, etcIts hard to hear but I wouldn't be so quick to say he won't get help.

She may go home and have your words haunt her so she eventually talksto her husband to feel better. Then they may google or specificallyask the doctor. That's the hard part, some doctors will just say itwill round out on its own. Hopefully if she asks the doctor it turns

out her doctor was just clueless (as was mine) and looks into it andgets her started (as mine did and now knows so can watch for it as dothe others in the practice from seeing my sons band for so long andthe results).

On 3/4/10, F <jen440@...> wrote:> Hi,>> I saw a 16 month old boy with severe plagio/brachy at the park today in

> Santa , CA. It was the worst case I have ever seen in person. It was> sad because he was such a good-looking little boy.>> I spoke to the mother about my twins and how successful their helmets had

> been, and said that her child reminded me of them before treatment. The> atmosphere turned so cold I almost needed a sweater! She was very very cold> and resistant. She said, " The pediatrician never said anything " . I said,

> " They usually don't! " She wasn't rude but obviously did NOT want to hear> what I was saying and probably won't do anything about it.>> If my kid was 10 mm plagio, hers had to be 30mm or more. If my kid was 96

> percent brachy, hers has to be 102 or more. His ears were about 1-2 inches> off! I just couldn't believe she hadn't noticed and I wished there were> something else I could have said or done to help her baby.

>> Anyone else ever have that experience? I might see her again at this park> and I hope there is some way I can help. At 16 months she doesn't have much> time.>> How much time does she have to pursue treatment?

>> >>-- Sent from my mobile device-mommy to Emma, Becca, , and Girl Scout cookies are coming!

[Guest guest]

I'm just over the hill from you in Woodland Hills! :-) I used to live

in SM!

I have had resistance and even balking from moms when mentioning it...

there is really not much else you can do. You spoke up and hopefully

it will give her pause to think about it.

My 7 year old has a kid in his class that has REALLY BAD plagio. It's

one of those things where I knew there was something " wrong " with him

as is facial features were " off " ... then he got his hair buzzed and

that is when I saw why his features were off. His head was completely

flat on one side from the midline back of his skull to his ear...

almost concave. I felt awful for the boy! But at 6 years old, not

much to do about it.

You spoke up - be proud!

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

Saw a 16 month boy with severe plagio/brachy today at

the park

Hi,

I saw a 16 month old boy with severe plagio/brachy at the park today in

Santa , CA. It was the worst case I have ever seen in person.

It was sad because he was such a good-looking little boy.

I spoke to the mother about my twins and how successful their helmets

had been, and said that her child reminded me of them before treatment.

The atmosphere turned so cold I almost needed a sweater! She was very

very cold and resistant. She said, " The pediatrician never said

anything " . I said, " They usually don't! " She wasn't rude but

obviously did NOT want to hear what I was saying and probably won't do

anything about it.

If my kid was 10 mm plagio, hers had to be 30mm or more. If my kid was

96 percent brachy, hers has to be 102 or more. His ears were about 1-2

inches off! I just couldn't believe she hadn't noticed and I wished

there were something else I could have said or done to help her baby.

Anyone else ever have that experience? I might see her again at this

park and I hope there is some way I can help. At 16 months she doesn't

have much time.

How much time does she have to pursue treatment?

[Guest guest]

My theory is that plagio is missing from prenatal education because of

the SIDS campaign.   They are probably scared parents won't place their

babies on their backs to sleep.  In my opinion, this is maddening!  If

we had know, we would have sought treatment sooner.  We would have

known to limit swings, bounce chairs, and stroller usage.  It is not

like we used these more than most parents, but some babies are more

susceptible to plagio.  I also wonder whether a majority of

pediatricians are so ignorant partially for the same reason.  Perhaps,

information about plagio/brachy is missing from the pediatrician

literature.

I may have helped a mom and baby out.  and I were out walking and

we were stopped by a mom and her 10 month old.  The mom asked if the

helmet worked.  She knew all about the helmet and where to go.  She

said her baby's head was flat in back.  Although I did not look at the

back, so I didn't see it.  What the mom did not know was that time was

crucial and that if she was going to get a helmet, she should get one

ASAP.  I emphasized many times how much more effective the helmet is on

younger babies.

-Kathy, mom to 21 months, being treated since 12 months

Cachie wrote:

 

Totally agree!  Particulary your message about the pediatrician. 

My daughter is 4-months old today and I mentioned her irregular head

shape to my pediatrian 2 months ago and she shrugged it off!  Said that

I should just press her head myself; that it will correct itself and I

have a year until her head is at its final shape.  Even said: "Some

parents spend all this money on expensive helmets for cosmetic

reasons." Now she appears to have severe plagio. I think plagio should

be built-in component of prenatal education. In any case, the decision

to get the helmet is of course a private family matter, however it is

quite unnerving how often I'm reading about other parents who notice

irregularities with the shape of their child's head and are not really

getting the guidance/support from their pediatricians.  hmm--what am I

paying you for?

 

On Thu, Mar 4, 2010 at 9:49 AM, Rapp <rapptkgmail>

wrote:

 

That's so sad!  If you see her again, maybe you can gently

mention it again.  Even if she started now and didn't get a complete

correction, it would still help some.  Maybe make it less noticeable.

 Maybe you  can mention the urgency of starting now and offer some hope

of it getting a little better.  But time is running out  for her son.

 I'm so upset that some pediatricians are not aware of this or think it

will just "round out!"  My son's pediatrician wasn't even concerned or

didn't even warn me to keep an eye on plagio when I kept mentioning

that he turns his head to the right all the time.  He was almost like

an owl!  By the time I noticed it was already affecting his facial

features.  Anyway, good luck and if you happen to see her again, let us

know what happened.

On Thu, Mar 4, 2010 at 8:07 AM,

Durocher <funwith4gmail>

wrote:

 

Typically you won't be able to get a band after 18 month

unless your

willing to fight for it.

Btw things sometimes look worse than they are, my sons ears looked a

good inch off in 2 different directions meaning the one was a good

inch forward and an inch lower, the ear was even tilted. It scarily

reminded me of the guy in goonies (though he was adorable and wasn't

that bad but still that was my vision of a grown up version) but when

measured his ears were only 17 mm assymetry which is 1.7 cm so not

even an inch. However that does fall under severe. And as for brachy

I actually have a friend whose son actually had very severe brachy and

he started at 4 month, he wore FOUR docbands, I have never heard of

anyone else to have so many and he still didn't get it completely gone

(he was still being treated for tort when he finished) as I could

still see it after treatment and he tried cst and chiro during

treatment (though now 2 yrs post band I don't ee it) so this late the

boy may not even be able to get total correction.

However with ear assymetry it has to be worth a shot. Has the lady

never tried to put a hat or sunglasses on him? I mean when my son

wore unglasses they didn't even it on both ears, if uyou adjusted them

so they did he had 1 completely visible eyebrow and one completely

covered by the glasses, they were that crooked. With a hat 1 ear was

never covered like the other, etc

Its hard to hear but I wouldn't be so quick to say he won't get help.

She may go home and have your words haunt her so she eventually talks

to her husband to feel better. Then they may google or specifically

ask the doctor. That's the hard part, some doctors will just say it

will round out on its own. Hopefully if she asks the doctor it turns

out her doctor was just clueless (as was mine) and looks into it and

gets her started (as mine did and now knows so can watch for it as do

the others in the practice from seeing my sons band for so long and

the results).

On 3/4/10, F <jen440gmail>

wrote:

> Hi,

>

> I saw a 16 month old boy with severe plagio/brachy at the park

today in

> Santa , CA. It was the worst case I have ever seen in

person. It was

> sad because he was such a good-looking little boy.

>

> I spoke to the mother about my twins and how successful their

helmets had

> been, and said that her child reminded me of them before

treatment. The

> atmosphere turned so cold I almost needed a sweater! She was very

very cold

> and resistant. She said, "The pediatrician never said anything". I

said,

> "They usually don't!" She wasn't rude but obviously did NOT want

to hear

> what I was saying and probably won't do anything about it.

>

> If my kid was 10 mm plagio, hers had to be 30mm or more. If my kid

was 96

> percent brachy, hers has to be 102 or more. His ears were about

1-2 inches

> off! I just couldn't believe she hadn't noticed and I wished there

were

> something else I could have said or done to help her baby.

>

> Anyone else ever have that experience? I might see her again at

this park

> and I hope there is some way I can help. At 16 months she doesn't

have much

> time.

>

> How much time does she have to pursue treatment?

>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!