Re: New to this site, help

[Guest guest]

I can relate to your frustration with the medical community. My son

has been wearing the band for two weeks but it was a long road to

get there. We were diagnosed with plagio locally but no one in this medical

community (Cleveland) would recommend the band. After much reading, many

phone calls, reading countless emails, we worked with CT and ended up going

to a plastic surgeon that CT recommended to get the prescription.

You keep doing what you are doing and get every bit of information you can.

A thought regarding wound up kids at DR appointments - take a baby sitter

with you. I have twins (and two older girls) and I don't go into a dr

office alone except if it is a well baby check up. When I have appointments

during the day, I check with the ladies group at our church to see if

someone is available to just be that extra pair of hands. There is always a

grandma or aunt who is willing to take a few hours out to help. Then you

can focus on asking the doctor question #1 from your list of 50 questions!!

Best of luck to you,

Sue

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

From: <bmloper@...>

<Plagiocephalyegroups>

Sent: Tuesday, May 16, 2000 1:26 AM

Subject: Re: New to this site, help

> howdy. me again.

> Yes I have the whole CAT scan. Photos and report. I have been so

> ticked off at these doctors and I think they feed on my frustration.

> I believe that the neurosurgeon is doing the MRI to make it look like

> he is addressing my concerns and covering himself. I specificaly

> asked him about the DOC band and he said that he doesn't recommend

> people for that and went on about the controversy. When I braught the

> CAT scan and report to the visit with me and talked about the

> sternomastoid (world worst speller, bear with me)muscle shortening,

> torticollis and mentioned seeing other doctors he said lets do a MRI

> to rule out any other possibilities. I figured why not, couldn't

> hurt. At least he wants to do something rather than saying " we'll

> wait till her hair grows in " . I told him that I was going to do the

> DOC band regardless of what he thaught. He smiled and said lets see

> you in three months and said that if I faxed him a list of PTs from

> my insurance he could recommend a good one for me. I thought that was

> a nice gesture. Has anyone had this much trouble getting a doctor to

> recomend the band?

> Trust me I feel so much better talking with you all that I feel

> stronger than ever and plan on being more alert and less distracted

> by during my next visit!

> Thanks,

>

>

> >

> > ,

> > >From what they have said, they are ruleing out other

> neurological

> > issues. Vague I know, I even asked that and once again, " well,

> we'll

> > know after the tests. " She has no other problems. She was quite

> > squirmy and talkative at her visit. Laughing and carrying on

> with

> > raspberries and bubbles. She would not straighten her head and

> > screamed when they touched the side of her head. Other than

> that she

> > seems healthy. I put in some pic of her at three months. I am

> gonna

> > try and get some of the back of her head and some recent pics

> scanned

> > in.

> > The first pedi asked for the CAT scans to rule out a brain

> tumor. And

> > asked for an ultrsound of her abdomin because she thaught it

> looked

> > prominent.

> > Question....Sometime when I pick my baby up or when we are

> doing

> > exercises I feel/hear a pop/crack sound. No one else seems to

> notice

> > this. Is this normal? By the way, I have a five year old that

> never

> > sounded like a rice crispy. The neurologist said " humm " when I

> told

> > him...

> > Another thing that she does is hold her (right) arm out

> backwards

> > when you pick her up.Palm facing backwards. When she was born,

> all 10

> > pounds of her, her right arm was bruised and she held it

> straight out

> > for about a month. She uses the right arm ok when playing and

> grabs

> > at thing fine now. So, to be long winded...maybe they think

> something

> > else is wrong with her. I do remember the Dr. saying something

> about

> > spinal fluid and tissue being something to look at when the MRI

> is

> > done. But her head is still flat in the back and according to

> the CAT

> > scan report they said she has plagio.

> > Thanks for reading my book,

> >

>

>

> ------------------------------------------------------------------------

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>

>

[Guest guest]

angela,are you in the medical field?you definately sound like the go to

person for information.where were you 7 years ago when i needed help with

steven?people like you are a lifesaver.

thanks.

lynne and livie.

[Guest guest]

boy,the backwards arm thing so familiar.when livie is in the walker,she hangs

her arms down and backwards?

lynne and livie.

[Guest guest]

I'm so glad you're feeling better!

I'll bet more than 1/2 the people here burst out laughing when you asked if anyone else had trouble getting a doctor to prescribe helmet or band therapy. Let's just say, you're not alone in that AT ALL! :)

Kaye/subscribe/Plagiocephaly

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

From: bmloper@...

Plagiocephalyegroups

Sent: Tuesday, May 16, 2000 12:26 AM

Subject: Re: New to this site, help

howdy. me again.Yes I have the whole CAT scan. Photos and report. I have been so ticked off at these doctors and I think they feed on my frustration. I believe that the neurosurgeon is doing the MRI to make it look like he is addressing my concerns and covering himself. I specificaly asked him about the DOC band and he said that he doesn't recommend people for that and went on about the controversy. When I braught the CAT scan and report to the visit with me and talked about the sternomastoid (world worst speller, bear with me)muscle shortening, torticollis and mentioned seeing other doctors he said lets do a MRI to rule out any other possibilities. I figured why not, couldn't hurt. At least he wants to do something rather than saying "we'll wait till her hair grows in". I told him that I was going to do the DOC band regardless of what he thaught. He smiled and said lets see you in three months and said that if I faxed him a list of PTs from my insurance he could recommend a good one for me. I thought that was a nice gesture. Has anyone had this much trouble getting a doctor to recomend the band? Trust me I feel so much better talking with you all that I feel stronger than ever and plan on being more alert and less distracted by during my next visit!Thanks, > > , > >From what they have said, they are ruleing out other neurological > issues. Vague I know, I even asked that and once again, "well, we'll > know after the tests." She has no other problems. She was quite > squirmy and talkative at her visit. Laughing and carrying on with > raspberries and bubbles. She would not straighten her head and > screamed when they touched the side of her head. Other than that she > seems healthy. I put in some pic of her at three months. I am gonna > try and get some of the back of her head and some recent pics scanned > in. > The first pedi asked for the CAT scans to rule out a brain tumor. And > asked for an ultrsound of her abdomin because she thaught it looked > prominent. > Question....Sometime when I pick my baby up or when we are doing > exercises I feel/hear a pop/crack sound. No one else seems to notice > this. Is this normal? By the way, I have a five year old that never > sounded like a rice crispy. The neurologist said "humm" when I told > him... > Another thing that she does is hold her (right) arm out backwards > when you pick her up.Palm facing backwards. When she was born, all 10 > pounds of her, her right arm was bruised and she held it straight out > for about a month. She uses the right arm ok when playing and grabs > at thing fine now. So, to be long winded...maybe they think something > else is wrong with her. I do remember the Dr. saying something about > spinal fluid and tissue being something to look at when the MRI is > done. But her head is still flat in the back and according to the CAT > scan report they said she has plagio. > Thanks for reading my book, >

[Guest guest]

In a message dated 5/15/00 9:29:02 PM Pacific Daylight Time,

bmloper@... writes:

<< Question....Sometime when I pick my baby up or when we are doing

exercises I feel/hear a pop/crack sound. No one else seems to notice

this. Is this normal? By the way, I have a five year old that never

sounded like a rice crispy. The neurologist said " humm " when I told

him...

>>

-from what I recall, there can be an increase in hip dysplasia (geez,

sp??), perhaps that is the pop you are hearing. Ask your ped., have they

been doing that awful hip/leg contortion thing at your babies well ck ups?

My dr takes Abby (by the thighs) and manipulates her bent legs back (towards

the examine table) to check her hips. It looks crappy, but I think it is

important. Also, as a btw, when Abby crawls, she turns her hands in. I

haven't brought it up to her ped, but has anyone else noticed any odd

positioning of the hands/arms? Kimry

[Guest guest]

In a message dated 5/16/00 7:40:57 AM Pacific Daylight Time,

yeeman@... writes:

<< ok what is my problem with putting in 300 - ITS $3000!

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

>>

you are too funny, that is the second time you have posted $300 rather than

$3000:) you need to quit typing with a baby on your lap:)! Kimry

[Guest guest]

In a message dated 5/16/00 12:01:14 PM Pacific Daylight Time,

msluck@... writes:

<< A thought regarding wound up kids at DR appointments - take a baby sitter

with you. I have twins (and two older girls) and I don't go into a dr

office alone except if it is a well baby check up. When I have appointments

during the day, I check with the ladies group at our church to see if

someone is available to just be that extra pair of hands. There is always a

grandma or aunt who is willing to take a few hours out to help. Then you

can focus on asking the doctor question #1 from your list of 50 questions!!

>>

Great tip! A lot of times, we take along our favorite sitter to help as an

extra set of hands (this also applies to family parties, big services at

church, errands, you name it!) Kimry

Here is a tip I can offer...if you ever worry about the expense of a sitter,

trade! I have a friend that is a teacher, & she tutors over the summer in

exchange for me babysitting her son. What I can't offer in money, I always

try to think of how I can generate it in time. Kimry

[Guest guest]

kimry,

how old is abby?i forget with all the babies in this website.does she have

tort?if so,have you done the p.t. e.i.thing yet?livie doesn't even sit up

alone yet.she'll be 9 months on the 23rd.she sits beautiful on your lap if

she's facing you and can sit unassisted for a very short time on the floor.i

plan on picking up a boppy today because we have an e.i. assessment this week.

thanks.

lynne and livie

[Guest guest]

Or, maybe if you type $300 enough times, it will JUST BE $300, instead of

$3000 which suits me just fine!

:-)

[Guest guest]

In a message dated 5/17/00 4:39:36 AM Pacific Daylight Time, DOLY1023@...

writes:

<< how old is abby?i forget with all the babies in this website.does she have

tort?if so,have you done the p.t. e.i.thing yet >>

Lynne-Abby is now 1 year (actually 13 months,) she is done with her band, she

had it for 6 months (actually 2 bands). Yes, she has torticollis (which btw

by ped did not diagnose but my treatment ctr did). They instructed me on

exercises, I did not have the enrgy left to fight for a physical therapist.

We are actually fortunate because a new friend of ours is a peds. pt and gave

me tons (well 3) handouts on exercises. And to boot, she immediately knew

" what was up " with Abby, so she has been a great resource. Thankfully Abby

is hitting all her milestones, but she is tiny to me. But she is on the

percentile grid for her height. My other girls were all tall & skinny. Abby

is just short & skinny! I was so worried that they were gonne be like " well,

we cant plot her length, it isn't even on the graph! " but she actually fell

at the bottom of the percentiles. Now if I could just stretch her out...ha,

ha! She is beautiful just the way she is! Are you guys going to court in

July? or is it June? Please keep us posted:) Kimry

[Guest guest]

In a message dated 5/17/00 9:42:33 AM Pacific Daylight Time, Sar617mc@...

writes:

<< Or, maybe if you type $300 enough times, it will JUST BE $300, instead of

$3000 which suits me just fine!

:-) >>

-$300 $300 $300 $300 $300 or how about, I will win the lotto, I will win

the lotto, I will win the lotto! Kimry

[Guest guest]

Kimry,

Now you've got the idea!

[Guest guest]

dear kimry,

by the way i think your name is so cooollll....do your children have unique

names too?thanks for the scoop.we go to court july 12th.i've taken the

weekoff from work because we may be closing on the house that same week

too.definately a nervous breakdown kind of week for me! the family resource

worker is coming tomorrow for a visit.we did have some problems tonight with

livie's mom.it seems the department of social services has arranged for the

weekly visits to now be held in a service center so they can monitor progress

with the tow of them together.susan(that's my sister,livie's mom) flipped out

when she got the letter i guess.she called me at work but i was with a

patient so i couldn't really talk to her.then she called my mother(who has

custody of her other child,marissa.livie's half sister) and starting flipping

all over her.anyway,she was suppose to come for a visit tomorrow but now she

can't see livie until the 25th.not a good situation at all.i actually cried

in the ladies room at work because although my heart breaks for susan,i can't

in good faith see her regaining custody of livie anytime soon.she isn't

stable mentally or physically,doesn't have a place to live,isn't following

through on any of her programs yet calls my house this past sunday and

wonders why i didn't wish her a happy mothers day???

anyway,thanks for caring...i appreciate it.

lynne

[Guest guest]

In a message dated 5/16/00 6:09:09 PM Pacific Daylight Time, DOLY1023@...

writes:

<< the backwards arm thing so familiar >>

had been doing the arm thing also. I noticed it more when he sat in

exersaucer. It's been put out of commission since then. Belinda

[Guest guest]

LOL, girls!! Ann

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[Guest guest]

In a message dated 5/17/00 7:22:37 PM Pacific Daylight Time, DOLY1023@...

writes:

<< by the way i think your name is so cooollll....do your children have

unique

names too >>

no, not unique, but they are all " A " names - , , Amy & Abigail

(Abby) each one has a family name for their middle name. I was one of three

" K " s - & Kerrin (pronounced ). Thank you for the compliment

about my name. Good luck in July, I know it can be tough to have mulitiple

stuff going on. When we bought the house we are in now, which closed escrow

in Dec, our 2nd daughter had broken her arm, my husband got a promotion at

work & I switched jobs (to follow my boss) when I was gosh 7 months pregnant.

This all took place from Oct to Dec, a lot of adjustments! Good luck in

July, I'll be thinking about you guys! Kimry

PS and just when we thought all was settled, & newborn Amy got RSV in

Feb., yuck!