Re: New here and at wit's end

[Guest guest]

Sheila:

Welcome to our group!

I'm sooo sorry to hear of all your family's troubles & struggles of

late.

Let me tell you though, what your Dr. suggested (wait & see) is

unfortunately VERY common. I just replied the same thing to another

new member.

The good news is that Amaya's Xrays came back negative for

craniosynostosis, that's terrific news! If you don't want to wait

til Amaya is 6 mos old, I would suggest you call your ped. office,

ask for a referral to a ped. neurosurgeon or another specialist to

get Amaya evaluated. Most plagio babies are referred to a specialist

for them to take a good look at the child's head shape. You might

want to do that soon, becuz most specialists have an average of a

months wait to get in for an appt..

I am happy to hear you were referred for PT for her tort.. I am not

sure of any financial programs, what about medicaid?

In the mean time though, you can continue repositioning attempts with

Amaya...it sounds like you are doing a great job already - you can

check out www.plagiocephaly.org/support then click " repositioning

ideas " .

Also, don't feel guilty for one second about any of this.! For some

reason, some babies are more prone to plagio than others. Especially

tort. babies .

Good luck with EVERYTHING. I can understand your concerns.

Where are you located?

Debbie Abby's mom DOCgrad

MI

> Hi everyone,

> I am so glad to have found this group and the torticollis group. I

hope

> this post doesn't get too long but I am at my wit's end and don't

know

> what to do with my poor baby.

> My name is Sheila and I have 4 kids ages 11, 9, 6, and 5 months,

plus 2

> stepkids. My 5 month old (a girl who we named Amaya) had a rather

> traumatic birth and was diagnosed with torticollis and

plagiocephaly at

> her 4 month check-up in June. I had noticed the tort. much sooner

and

> mentioned it to her pediatrician at her 2 month check-up but she

said

> " well let's just wait and see " . See what? I'd like to know. How much

> worse it can get? Anyway...I began massages on the short muscle and

> doing positioning techniques I read about, starting at about 2

months,

> with poor results, because she has a large cavernous hemangioma

> affecting the neck muscle on the tort side. By the time her 4 month

> appointment rolled around, the " flat spot " on the other side of her

head

> was VERY VERY prominent and had me **greatly** concerned. Also, her

> right ear is pushed way far forward and her right eye looks so much

> bigger, and she has had jaw problems. My poor baby :-(

> So.....the pediatrician ordered skull x-rays on June 19th. And that

was

> hell. They took 9 x-rays that day, then called me 5 days later and

said

> they weren't the right views, so I had to bring her back and they

took

> 16 more. And now I'm concerned about all that radiation as

well...but

> that's a whole 'nother story.

> The dr. called us on June 30th with the official diagnosis of

> plagiocephaly, but said " Let's just see how it looks at her 6 month

> check-up, and in the meantime get physical therapy for the

torticollis. "

> Does this seem odd? To me it seems very passive, but maybe I am just

> overeacting.

> I called physical therapy and they can't even get her in until

August

> 22nd, at which time she will be 6 months old. To ME, time is of the

> essence, but to THEM...I guess it doesn't matter. So what should I

be

> doing in the meantime? I keep her sitting upright or on her tummy as

> much as possible, and I always place her so that her toys, tv.

people,

> whatever are on her left side so she HAS to turn her head the other

way,

> and I put her in a side sleeper at night but she always manages to

twist

> herself back around to her favored position. I feel like the worst

> mother in the world just sitting here watching it all get worse day

by

> day, not knowing what to do. I want action taken and I want it

NOW...but

> everyone " in charge " of the situation seems so careless about it.

Should

> I look for a different dr.?

> And now....here's another dilemma. My husband lost his job back in

May

> and our insurance ran out May 31st. We can continue it through

COBRA for

> 18 months, but they want us to come up with $1218 by August 1st and

I

> don't see how we will possibly be able to do so. We live paycheck to

> paycheck. If I were still working maybe we'd be able to swing it,

but I

> quit working when pregnancy complications began with Amaya, and now

> daycare would be more than I could make. My husband has a new job

but

> they don't have medical insurance. We applied for the state's

program,

> but we make about $500 too much per month. What the hell are we

going to

> do!??! I was concerned about coming up with $20 co-payments for all

> those PT sessions...now we may not even be able to go at all. I'm

just

> sick about this. We're waiting to hear back from our banker for a

> consolidation loan for this and some other stuff - PLEASE keep your

> fingers crossed for us, that we get approved!! Otherwise, are there

any

> resources I may be unaware of??

> What would you do in my shoes? My poor sweet little girl :-(

> I feel so darn helpless and the hopelessness is starting to niggle

in

> too. :-(

> ~Sheila

[Guest guest]

Sheila,

I am so sorry you are experiencing such passive doctors. I feel your

pain! My baby has a milder case of torticollis (he's 5 months.) I

would suggest looking in Early Intervention for her tort(What state

were you in again?) Logan just got his first evaluation by them

today. He gets his second one on August 8th and I am just praying

that he qualifies.

It sounds like you are doing all you can for Amaya. Have you tried

putting a rolled up receiving blanket INSIDE her onsie while she

sleeps? We tried this with Logan, to keep him off the right side.

It worked pretty well.

It is so hard to watch our little babies and feel the clock " tick

tock tick tock. " Oh, I feel your pain!! I would look for a more

agressive doc, if possible. We have no income right now either (I'm

a sahm, dh is a dental student.) We have Logan on Cobra and he's the

only one insured right now. I will pray that your loan goes through!

-/Logan 5 months

PA

> Hi everyone,

> I am so glad to have found this group and the torticollis group. I

hope

> this post doesn't get too long but I am at my wit's end and don't

know

> what to do with my poor baby.

> My name is Sheila and I have 4 kids ages 11, 9, 6, and 5 months,

plus 2

> stepkids. My 5 month old (a girl who we named Amaya) had a rather

> traumatic birth and was diagnosed with torticollis and

plagiocephaly at

> her 4 month check-up in June. I had noticed the tort. much sooner

and

> mentioned it to her pediatrician at her 2 month check-up but she

said

> " well let's just wait and see " . See what? I'd like to know. How much

> worse it can get? Anyway...I began massages on the short muscle and

> doing positioning techniques I read about, starting at about 2

months,

> with poor results, because she has a large cavernous hemangioma

> affecting the neck muscle on the tort side. By the time her 4 month

> appointment rolled around, the " flat spot " on the other side of her

head

> was VERY VERY prominent and had me **greatly** concerned. Also, her

> right ear is pushed way far forward and her right eye looks so much

> bigger, and she has had jaw problems. My poor baby :-(

> So.....the pediatrician ordered skull x-rays on June 19th. And that

was

> hell. They took 9 x-rays that day, then called me 5 days later and

said

> they weren't the right views, so I had to bring her back and they

took

> 16 more. And now I'm concerned about all that radiation as

well...but

> that's a whole 'nother story.

> The dr. called us on June 30th with the official diagnosis of

> plagiocephaly, but said " Let's just see how it looks at her 6 month

> check-up, and in the meantime get physical therapy for the

torticollis. "

> Does this seem odd? To me it seems very passive, but maybe I am just

> overeacting.

> I called physical therapy and they can't even get her in until

August

> 22nd, at which time she will be 6 months old. To ME, time is of the

> essence, but to THEM...I guess it doesn't matter. So what should I

be

> doing in the meantime? I keep her sitting upright or on her tummy as

> much as possible, and I always place her so that her toys, tv.

people,

> whatever are on her left side so she HAS to turn her head the other

way,

> and I put her in a side sleeper at night but she always manages to

twist

> herself back around to her favored position. I feel like the worst

> mother in the world just sitting here watching it all get worse day

by

> day, not knowing what to do. I want action taken and I want it

NOW...but

> everyone " in charge " of the situation seems so careless about it.

Should

> I look for a different dr.?

> And now....here's another dilemma. My husband lost his job back in

May

> and our insurance ran out May 31st. We can continue it through

COBRA for

> 18 months, but they want us to come up with $1218 by August 1st and

I

> don't see how we will possibly be able to do so. We live paycheck to

> paycheck. If I were still working maybe we'd be able to swing it,

but I

> quit working when pregnancy complications began with Amaya, and now

> daycare would be more than I could make. My husband has a new job

but

> they don't have medical insurance. We applied for the state's

program,

> but we make about $500 too much per month. What the hell are we

going to

> do!??! I was concerned about coming up with $20 co-payments for all

> those PT sessions...now we may not even be able to go at all. I'm

just

> sick about this. We're waiting to hear back from our banker for a

> consolidation loan for this and some other stuff - PLEASE keep your

> fingers crossed for us, that we get approved!! Otherwise, are there

any

> resources I may be unaware of??

> What would you do in my shoes? My poor sweet little girl :-(

> I feel so darn helpless and the hopelessness is starting to niggle

in

> too. :-(

> ~Sheila

[Guest guest]

Hi Sheila,

You've come to a good place! There's a lot of support here

Somebody already mentioned to you about the Early Intervention

program. My Abby (4 mos) is getting PT & OT 2x a week with the

program. They came for an evaluation and treatment started less than

a week later. They were great and were able to move quickly because I

had the prescription from the specialist. But I really think that the

stretching and work we do on our own time is making the most profound

difference. It's hard work, though!

Our Dr is also having us reposition Abby and " wait & see " . We are

having good results, but I did go for an evaluation with CT to get

the ball rolling in case we need to band her. The initial evaluation

is free (I don't know about subsequent ones as we've only been there

once). The orthotist took measurements to let us know the severity of

the plagio and also gave us some good advice on repositioning and

working w/the tort. It gave me a lot of peace of mind going there,

and we'll go back in a few weeks to remeasure.

I'm sorry that you are going through such a rough time right now.

Hang in there!

Hugs of support,

Christy (Abby's mom)

NY

[Guest guest]

Sheila,

It sounds like you are a great mother. You have already done your

research and began your own physical therapy routine- which is great.

It seems like your doctors are being very passive. Is this physical

therapy program the only one in your area? Could you try to get her

into another? I will put you on my prayer list! When I am in dire

straights with money and medical bills - the Good Lord is my

provider!!!! We are all here for you!!!!

Marilyn- mommy to Hayden-- awaiting evaluation in one week.

[Guest guest]

Hi Shelia,

Welcome to the group!!

Sadly your story is all to familiar. I'm sorry I don't have any great

words of wisdom for you. I'm sure one of the moderators have given

you some great advice. This group is a great support to all it's

members. You've come to the right place.

)

> Hi everyone,

> I am so glad to have found this group and the torticollis group. I

hope

> this post doesn't get too long but I am at my wit's end and don't

know

> what to do with my poor baby.

> My name is Sheila and I have 4 kids ages 11, 9, 6, and 5 months,

plus 2

> stepkids. My 5 month old (a girl who we named Amaya) had a rather

> traumatic birth and was diagnosed with torticollis and

plagiocephaly at

> her 4 month check-up in June. I had noticed the tort. much sooner

and

> mentioned it to her pediatrician at her 2 month check-up but she

said

> " well let's just wait and see " . See what? I'd like to know. How much

> worse it can get? Anyway...I began massages on the short muscle and

> doing positioning techniques I read about, starting at about 2

months,

> with poor results, because she has a large cavernous hemangioma

> affecting the neck muscle on the tort side. By the time her 4 month

> appointment rolled around, the " flat spot " on the other side of her

head

> was VERY VERY prominent and had me **greatly** concerned. Also, her

> right ear is pushed way far forward and her right eye looks so much

> bigger, and she has had jaw problems. My poor baby :-(

> So.....the pediatrician ordered skull x-rays on June 19th. And that

was

> hell. They took 9 x-rays that day, then called me 5 days later and

said

> they weren't the right views, so I had to bring her back and they

took

> 16 more. And now I'm concerned about all that radiation as

well...but

> that's a whole 'nother story.

> The dr. called us on June 30th with the official diagnosis of

> plagiocephaly, but said " Let's just see how it looks at her 6 month

> check-up, and in the meantime get physical therapy for the

torticollis. "

> Does this seem odd? To me it seems very passive, but maybe I am just

> overeacting.

> I called physical therapy and they can't even get her in until

August

> 22nd, at which time she will be 6 months old. To ME, time is of the

> essence, but to THEM...I guess it doesn't matter. So what should I

be

> doing in the meantime? I keep her sitting upright or on her tummy as

> much as possible, and I always place her so that her toys, tv.

people,

> whatever are on her left side so she HAS to turn her head the other

way,

> and I put her in a side sleeper at night but she always manages to

twist

> herself back around to her favored position. I feel like the worst

> mother in the world just sitting here watching it all get worse day

by

> day, not knowing what to do. I want action taken and I want it

NOW...but

> everyone " in charge " of the situation seems so careless about it.

Should

> I look for a different dr.?

> And now....here's another dilemma. My husband lost his job back in

May

> and our insurance ran out May 31st. We can continue it through

COBRA for

> 18 months, but they want us to come up with $1218 by August 1st and

I

> don't see how we will possibly be able to do so. We live paycheck to

> paycheck. If I were still working maybe we'd be able to swing it,

but I

> quit working when pregnancy complications began with Amaya, and now

> daycare would be more than I could make. My husband has a new job

but

> they don't have medical insurance. We applied for the state's

program,

> but we make about $500 too much per month. What the hell are we

going to

> do!??! I was concerned about coming up with $20 co-payments for all

> those PT sessions...now we may not even be able to go at all. I'm

just

> sick about this. We're waiting to hear back from our banker for a

> consolidation loan for this and some other stuff - PLEASE keep your

> fingers crossed for us, that we get approved!! Otherwise, are there

any

> resources I may be unaware of??

> What would you do in my shoes? My poor sweet little girl :-(

> I feel so darn helpless and the hopelessness is starting to niggle

in

> too. :-(

> ~Sheila

[Guest guest]

Hi Sheila and welcome to the group!

I can totally understand your frustration with being told to wait

with each turn you make. Amaya is at a wonderful age to get started

now and receive terrific improvements. We had taken my twins to the

neuro when they were about 6 months old, and we were told to wait and

see and come back in a month. During that month our neuro wanted us

to aggressively reposition, and then we would take it from there,

sounds like very similar situations.

I don't know much on tort, but I'm sure youwill hear from many who do

deal with it.

I really don't know what to tell you regarding insurance. We were on

COBRA for awhile as well, but we did have coverage by the time the

twins were banded. But I do remember how difficult it was to come up

withthe cash at times. I really do feel for your situation, I wish I

knew what to tell you.

Hang in there, and welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hi everyone,

> I am so glad to have found this group and the torticollis group. I

hope

> this post doesn't get too long but I am at my wit's end and don't

know

> what to do with my poor baby.

> My name is Sheila and I have 4 kids ages 11, 9, 6, and 5 months,

plus 2

> stepkids. My 5 month old (a girl who we named Amaya) had a rather

> traumatic birth and was diagnosed with torticollis and

plagiocephaly at

> her 4 month check-up in June. I had noticed the tort. much sooner

and

> mentioned it to her pediatrician at her 2 month check-up but she

said

> " well let's just wait and see " . See what? I'd like to know. How much

> worse it can get? Anyway...I began massages on the short muscle and

> doing positioning techniques I read about, starting at about 2

months,

> with poor results, because she has a large cavernous hemangioma

> affecting the neck muscle on the tort side. By the time her 4 month

> appointment rolled around, the " flat spot " on the other side of her

head

> was VERY VERY prominent and had me **greatly** concerned. Also, her

> right ear is pushed way far forward and her right eye looks so much

> bigger, and she has had jaw problems. My poor baby :-(

> So.....the pediatrician ordered skull x-rays on June 19th. And that

was

> hell. They took 9 x-rays that day, then called me 5 days later and

said

> they weren't the right views, so I had to bring her back and they

took

> 16 more. And now I'm concerned about all that radiation as

well...but

> that's a whole 'nother story.

> The dr. called us on June 30th with the official diagnosis of

> plagiocephaly, but said " Let's just see how it looks at her 6 month

> check-up, and in the meantime get physical therapy for the

torticollis. "

> Does this seem odd? To me it seems very passive, but maybe I am just

> overeacting.

> I called physical therapy and they can't even get her in until

August

> 22nd, at which time she will be 6 months old. To ME, time is of the

> essence, but to THEM...I guess it doesn't matter. So what should I

be

> doing in the meantime? I keep her sitting upright or on her tummy as

> much as possible, and I always place her so that her toys, tv.

people,

> whatever are on her left side so she HAS to turn her head the other

way,

> and I put her in a side sleeper at night but she always manages to

twist

> herself back around to her favored position. I feel like the worst

> mother in the world just sitting here watching it all get worse day

by

> day, not knowing what to do. I want action taken and I want it

NOW...but

> everyone " in charge " of the situation seems so careless about it.

Should

> I look for a different dr.?

> And now....here's another dilemma. My husband lost his job back in

May

> and our insurance ran out May 31st. We can continue it through

COBRA for

> 18 months, but they want us to come up with $1218 by August 1st and

I

> don't see how we will possibly be able to do so. We live paycheck to

> paycheck. If I were still working maybe we'd be able to swing it,

but I

> quit working when pregnancy complications began with Amaya, and now

> daycare would be more than I could make. My husband has a new job

but

> they don't have medical insurance. We applied for the state's

program,

> but we make about $500 too much per month. What the hell are we

going to

> do!??! I was concerned about coming up with $20 co-payments for all

> those PT sessions...now we may not even be able to go at all. I'm

just

> sick about this. We're waiting to hear back from our banker for a

> consolidation loan for this and some other stuff - PLEASE keep your

> fingers crossed for us, that we get approved!! Otherwise, are there

any

> resources I may be unaware of??

> What would you do in my shoes? My poor sweet little girl :-(

> I feel so darn helpless and the hopelessness is starting to niggle

in

> too. :-(

> ~Sheila