Re: New here and I urgently need help!

[Guest guest]

Hi Lesa & welcome to our group!

Unfortunately, your story is all too common I've been a member of

this group for over 18 mos already & hear similar stories time after

time. It's very very frustrating to hear.

But you are doing everything right and you should be proud of

yourself. You are following your mommy instincts and going the extra

mile for your little Kaity.

From a personal standpoint, for our daughter, the DOCband was better

than the STARband. My Abby wore them both, first wore the STARband

for 3 mos time (from age 8-11 mos) with NO improvment, it actually

flattened some of her good side of her head from incorrect

pressures. This was a result of an untrained and unexperience

orthotist. I am still upset about this to this very day, it's been

1.5 yrs already. But we lost such valuable time that we can never

get back. Starbands can work, as long as the orthotist who'll be

treating your child is experienced, that is the key.

Immediately after we stopped her STARband treatment, we switched her

into a DOCband - she began her DOCband treatment at age 11.5 mos,

Abby's plagio was severe, but we were still able to get 50-60%

correciton with one band over 4.5 mos time! I am so happy with her

results. Her head is still a bit flat, but nowhere near what it was

like before her band. So Abby's treatment was begun at an " older "

age, but we had great results, even with her severe plagio. So with

your Kaity's plagio being moderate or so, I'm sure you could still

get good improvement. The bands also help with assymetries! All

orthotists who work for Cranial Tech with the DOCband go thru mos of

training before they are allowed to treat a plagio child with their

band.

You can compare the DOCband vs STARband to see some differences at

www.plagiocephaly.org/support then click " compare some cranial

orthosis " .

I am glad to hear you got a referral to receive PT for her

torticollis. That should help a lot.

I had never thought about the thumb sucking playing a role in plagio,

but once you said it, I immediately thought of my daughter. Abby is

a right thumb sucker and always had her head to the right to suck it,

along with the right plagio. Very interesting!

Welcome again to our group. I know I've seen members from the St.

Louis area post in our group, I hope one will reply with some local

info for you.

Debbie Abby's mom 3/1/00 DOCGrad 6/22/01

MI

> Hello, my name is Lesa and I have a 10-1/2 month old daughter,

Kaity,

> with Positional Plagiocephaly and Torticollis.

>

> I am just beginning to learn about these conditions, but as time is

of

> the essence in getting her treated, I was wondering if there are

> references regarding the different types of helmets used for

therapy?

> I've seen the DOCband and STARband on the web, and am wondering

what

> the best band (whether it is one of those or another) is considered

to

> be? And also if anyone knows of any recommended specialists in the

> St. Louis area for this condition?

>

> As background, Kaity was born at 39 weeks by vacuum-assisted

delivery

> (induced). At the time her head was misshapen but we were assured

> that it was a result of the delivery and that it would soon correct

> itself.

>

> Over the next few months, however, her head shape continued

becoming

> more abnormal with a noticeable flat spot on her left side, I

believe

> because she sleeps with her head tilted in that direction while

> sucking her left thumb. Around that same time, we also noticed

that

> her ears were extremely different, with the left one being larger

and

> flatter, and she was noticably reluctant to turn to her right

side.

> These issues were raised with our pediatrician, who felt that they

> would correct on their own.

>

> We began trying to position her differently while sleeping and

using

> one of the special pillows to reduce pressure and did notice some

> improvement over the next couple of months, but again brought up

our

> concerns at Kaity's 9 month well-child visit. At that time, our

> pediatrician again stated that she did not think it was a problem

but

> agreed to refer us to a plastic surgeon for evaluation.

>

> The first appointment we could get was yesterday, by which time

Kaity

> is now 10-1/2 months old. The plastic surgeon stated that he felt

the

> degree of flatness would be about a 4 or 5 on a scale of 10. Then

he

> pointed out to us the rather severe (from my perspective)

misalignment

> of her ears. To my surprise, however, he suggested that we do

> nothing--he said that at her age, a helmet would be of extremely

> limited benefit and probably not worth the hassle. He felt that

> because she is a girl, her hair would disguise most of the

problem.

> And he also said that the helmet would do nothing about her ear

> misalignment.

>

> I was initially relieved that we wouldn't have to get the helmet,

but

> after getting home and looking at Kaity more closely, I felt that

this

> just isn't acceptable. I started doing internet research and the

more

> I look into it, the more certain I am that we really need to

address

> this. If what I've read is correct, it is not too late to begin

> therapy.

>

> I called our pediatrician today and after lengthy discussion she

> agreed that we try the helmet for a month, if only to see if we can

> prevent the flatness from becoming worse since Kaity still sleeps

on

> it. But it's kind of up to me to do the legwork on this. I've

been

> given the contact info for a place to get the helmet, but I don't

have

> a lot of confidence considering the answers I've gotten so far. I

> feel like I need to do my own research.

>

> I also convinced the ped. to refer us to a physical therapist to

> address the torticollis, so I feel better about that. But I feel

> absolutely horrible that I allowed so many months to go by while

> believing the ped. that it would resolve on its own. I should have

> done my research sooner rather than accepting that answer.

>

> At any rate, any suggestions or information (or words of support

since

> I'm being made to feel like I'm over-reacting) would be greatly

> appreciated!

>

> Thanks so much,

> Lesa

[Guest guest]

Lesa,

I just want to tell you DON'T FEEL GUILTY!! We rely on the

medical " experts " to tell us the best for our children. I was also

told that Logan would " grow out of it " at his 2 month appt. Luckily

I switched peds. It's not too late at 10 1/2 months, I would

definitely look into a DOC band if possible.

-/Logan 5 months

PA

> Hello, my name is Lesa and I have a 10-1/2 month old daughter,

Kaity,

> with Positional Plagiocephaly and Torticollis.

>

> I am just beginning to learn about these conditions, but as time is

of

> the essence in getting her treated, I was wondering if there are

> references regarding the different types of helmets used for

therapy?

> I've seen the DOCband and STARband on the web, and am wondering

what

> the best band (whether it is one of those or another) is considered

to

> be? And also if anyone knows of any recommended specialists in the

> St. Louis area for this condition?

>

> As background, Kaity was born at 39 weeks by vacuum-assisted

delivery

> (induced). At the time her head was misshapen but we were assured

> that it was a result of the delivery and that it would soon correct

> itself.

>

> Over the next few months, however, her head shape continued

becoming

> more abnormal with a noticeable flat spot on her left side, I

believe

> because she sleeps with her head tilted in that direction while

> sucking her left thumb. Around that same time, we also noticed

that

> her ears were extremely different, with the left one being larger

and

> flatter, and she was noticably reluctant to turn to her right

side.

> These issues were raised with our pediatrician, who felt that they

> would correct on their own.

>

> We began trying to position her differently while sleeping and

using

> one of the special pillows to reduce pressure and did notice some

> improvement over the next couple of months, but again brought up

our

> concerns at Kaity's 9 month well-child visit. At that time, our

> pediatrician again stated that she did not think it was a problem

but

> agreed to refer us to a plastic surgeon for evaluation.

>

> The first appointment we could get was yesterday, by which time

Kaity

> is now 10-1/2 months old. The plastic surgeon stated that he felt

the

> degree of flatness would be about a 4 or 5 on a scale of 10. Then

he

> pointed out to us the rather severe (from my perspective)

misalignment

> of her ears. To my surprise, however, he suggested that we do

> nothing--he said that at her age, a helmet would be of extremely

> limited benefit and probably not worth the hassle. He felt that

> because she is a girl, her hair would disguise most of the

problem.

> And he also said that the helmet would do nothing about her ear

> misalignment.

>

> I was initially relieved that we wouldn't have to get the helmet,

but

> after getting home and looking at Kaity more closely, I felt that

this

> just isn't acceptable. I started doing internet research and the

more

> I look into it, the more certain I am that we really need to

address

> this. If what I've read is correct, it is not too late to begin

> therapy.

>

> I called our pediatrician today and after lengthy discussion she

> agreed that we try the helmet for a month, if only to see if we can

> prevent the flatness from becoming worse since Kaity still sleeps

on

> it. But it's kind of up to me to do the legwork on this. I've

been

> given the contact info for a place to get the helmet, but I don't

have

> a lot of confidence considering the answers I've gotten so far. I

> feel like I need to do my own research.

>

> I also convinced the ped. to refer us to a physical therapist to

> address the torticollis, so I feel better about that. But I feel

> absolutely horrible that I allowed so many months to go by while

> believing the ped. that it would resolve on its own. I should have

> done my research sooner rather than accepting that answer.

>

> At any rate, any suggestions or information (or words of support

since

> I'm being made to feel like I'm over-reacting) would be greatly

> appreciated!

>

> Thanks so much,

> Lesa

[Guest guest]

Hi Lesa,

Welcome to the group! I don't think your over reacting at all!!

I had my daughter banded on July 3, she was 11 months and one

week. It took me a long time to get to where we are today. Her doctor

told me it would round out on it's own. I took her to a ped.

neusosurgeon who told me her head was perfect. I took her to another

ped. neurosurgeon who told me a helmet wouldn't work on her!!! I was

floored and so upset. I ended up taking her to Cranial Technologies

for a free evaluation. They said she did have moderate plagio and

recommended a DOCband. They took pictures of her head and wrote a

little report to mail to my doctor. I then went to my doctor and

asked her to write me a script for the DOCband. After seeing the

pictures of and reading the report she, wrote it!! This doctor

is so uneducated on tort and plagio, that I know more then her.

It also took me 4 months and 3 different doctors just to get her

diagnosed with tort. The tort is what caused her plagio.

I'm in NY so I can't tell you of any place that I know of in your

area. Cranial Technologies has a clinic in Kansas City, is that

really far from you??

Good luck and please keep us posted,

> Hello, my name is Lesa and I have a 10-1/2 month old daughter,

Kaity,

> with Positional Plagiocephaly and Torticollis.

>

> I am just beginning to learn about these conditions, but as time is

of

> the essence in getting her treated, I was wondering if there are

> references regarding the different types of helmets used for

therapy?

> I've seen the DOCband and STARband on the web, and am wondering

what

> the best band (whether it is one of those or another) is considered

to

> be? And also if anyone knows of any recommended specialists in the

> St. Louis area for this condition?

>

> As background, Kaity was born at 39 weeks by vacuum-assisted

delivery

> (induced). At the time her head was misshapen but we were assured

> that it was a result of the delivery and that it would soon correct

> itself.

>

> Over the next few months, however, her head shape continued

becoming

> more abnormal with a noticeable flat spot on her left side, I

believe

> because she sleeps with her head tilted in that direction while

> sucking her left thumb. Around that same time, we also noticed

that

> her ears were extremely different, with the left one being larger

and

> flatter, and she was noticably reluctant to turn to her right

side.

> These issues were raised with our pediatrician, who felt that they

> would correct on their own.

>

> We began trying to position her differently while sleeping and

using

> one of the special pillows to reduce pressure and did notice some

> improvement over the next couple of months, but again brought up

our

> concerns at Kaity's 9 month well-child visit. At that time, our

> pediatrician again stated that she did not think it was a problem

but

> agreed to refer us to a plastic surgeon for evaluation.

>

> The first appointment we could get was yesterday, by which time

Kaity

> is now 10-1/2 months old. The plastic surgeon stated that he felt

the

> degree of flatness would be about a 4 or 5 on a scale of 10. Then

he

> pointed out to us the rather severe (from my perspective)

misalignment

> of her ears. To my surprise, however, he suggested that we do

> nothing--he said that at her age, a helmet would be of extremely

> limited benefit and probably not worth the hassle. He felt that

> because she is a girl, her hair would disguise most of the

problem.

> And he also said that the helmet would do nothing about her ear

> misalignment.

>

> I was initially relieved that we wouldn't have to get the helmet,

but

> after getting home and looking at Kaity more closely, I felt that

this

> just isn't acceptable. I started doing internet research and the

more

> I look into it, the more certain I am that we really need to

address

> this. If what I've read is correct, it is not too late to begin

> therapy.

>

> I called our pediatrician today and after lengthy discussion she

> agreed that we try the helmet for a month, if only to see if we can

> prevent the flatness from becoming worse since Kaity still sleeps

on

> it. But it's kind of up to me to do the legwork on this. I've

been

> given the contact info for a place to get the helmet, but I don't

have

> a lot of confidence considering the answers I've gotten so far. I

> feel like I need to do my own research.

>

> I also convinced the ped. to refer us to a physical therapist to

> address the torticollis, so I feel better about that. But I feel

> absolutely horrible that I allowed so many months to go by while

> believing the ped. that it would resolve on its own. I should have

> done my research sooner rather than accepting that answer.

>

> At any rate, any suggestions or information (or words of support

since

> I'm being made to feel like I'm over-reacting) would be greatly

> appreciated!

>

> Thanks so much,

> Lesa

[Guest guest]

Lesa,

I am so sorry to hear of the run around you have been getting! It

really is disgusting how most doctors are still so uneducated abou

this.

My twins both wore STARbands. My son Danny was flat straight across

the back with no ear or facial assymetry. My daughter had left side

plagio, with the typical facial assym. associated with plagio. Her

one ear was flatter and more forward, she had a larger eye and fuller

cheek on the one side. The STARband not only helped round out their

heads, but it also helped correct Kaylie's facial assymetry as well.

Since your daughter is older, I would recommend either the DOC or

STAR bands rather than a locally made helmet, just because at her

age, the growth spurts may be coming at a slower rate.

Keep us posted!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello, my name is Lesa and I have a 10-1/2 month old daughter,

Kaity,

> with Positional Plagiocephaly and Torticollis.

>

> I am just beginning to learn about these conditions, but as time is

of

> the essence in getting her treated, I was wondering if there are

> references regarding the different types of helmets used for

therapy?

> I've seen the DOCband and STARband on the web, and am wondering

what

> the best band (whether it is one of those or another) is considered

to

> be? And also if anyone knows of any recommended specialists in the

> St. Louis area for this condition?

>

> As background, Kaity was born at 39 weeks by vacuum-assisted

delivery

> (induced). At the time her head was misshapen but we were assured

> that it was a result of the delivery and that it would soon correct

> itself.

>

> Over the next few months, however, her head shape continued

becoming

> more abnormal with a noticeable flat spot on her left side, I

believe

> because she sleeps with her head tilted in that direction while

> sucking her left thumb. Around that same time, we also noticed

that

> her ears were extremely different, with the left one being larger

and

> flatter, and she was noticably reluctant to turn to her right

side.

> These issues were raised with our pediatrician, who felt that they

> would correct on their own.

>

> We began trying to position her differently while sleeping and

using

> one of the special pillows to reduce pressure and did notice some

> improvement over the next couple of months, but again brought up

our

> concerns at Kaity's 9 month well-child visit. At that time, our

> pediatrician again stated that she did not think it was a problem

but

> agreed to refer us to a plastic surgeon for evaluation.

>

> The first appointment we could get was yesterday, by which time

Kaity

> is now 10-1/2 months old. The plastic surgeon stated that he felt

the

> degree of flatness would be about a 4 or 5 on a scale of 10. Then

he

> pointed out to us the rather severe (from my perspective)

misalignment

> of her ears. To my surprise, however, he suggested that we do

> nothing--he said that at her age, a helmet would be of extremely

> limited benefit and probably not worth the hassle. He felt that

> because she is a girl, her hair would disguise most of the

problem.

> And he also said that the helmet would do nothing about her ear

> misalignment.

>

> I was initially relieved that we wouldn't have to get the helmet,

but

> after getting home and looking at Kaity more closely, I felt that

this

> just isn't acceptable. I started doing internet research and the

more

> I look into it, the more certain I am that we really need to

address

> this. If what I've read is correct, it is not too late to begin

> therapy.

>

> I called our pediatrician today and after lengthy discussion she

> agreed that we try the helmet for a month, if only to see if we can

> prevent the flatness from becoming worse since Kaity still sleeps

on

> it. But it's kind of up to me to do the legwork on this. I've

been

> given the contact info for a place to get the helmet, but I don't

have

> a lot of confidence considering the answers I've gotten so far. I

> feel like I need to do my own research.

>

> I also convinced the ped. to refer us to a physical therapist to

> address the torticollis, so I feel better about that. But I feel

> absolutely horrible that I allowed so many months to go by while

> believing the ped. that it would resolve on its own. I should have

> done my research sooner rather than accepting that answer.

>

> At any rate, any suggestions or information (or words of support

since

> I'm being made to feel like I'm over-reacting) would be greatly

> appreciated!

>

> Thanks so much,

> Lesa