Re: New here and I urgently need help!

[Guest guest]

Hi Lesa and welcome! Your story is soooo familiar right up until the

specialist part. Our specialist immediately recommended a helmet. Our ped put

off our fears until we insisted on seeing a specialist. She started her

helmet treatment at 9 months. While 10 months is not ideal, it is still a

good time to start and to get good correction. At your daughter's age a band

would probably be best. The DOCband and STARband are both good product. The

DOC people specialize in bands for babies and their product is top notch. The

STARband is an excellent product, but you have to do a thorough and careful

screening of the ortho first. Not all orthos that make the STARband have the

same level of experience or expertise. I've copied and pasted some

information from the CT clinic in Missouri. That is the only place in MO that

makes the DOCband. I tried to check out the orthos that do the STARband, but

for some reason the STARband webpage was not working properly. You can check

them out at www.orthomerica.com. You can also find a list of band friendly

specialists by location at www.plagiocephaly.org.

I personally think you are doing the right thing by pursuing this. It's easy

for the doctors to blow you off and tell you to leave well enough alone. They

don't have to look at your baby every day and wonder if they did all that

they could. YOU have to live with the decision that is made not them!

Best wishes to you and please keep us posted!!

Marci (Mom to )

Oklahoma

DOCband clinic info below:

Rehab Designs of America

Rockhill Medical Plaza North

6650 Troost, Suite 100

Kansas City, MO 64131

Phone: 816-523-1333

Fax: 816-444-1700

Clinician: Bob Kuenzi, CP

Clinician: Jan Wollard, PT, CO

[Guest guest]

Hi Lesa,

Welcome to the group. I can't believe how many times I see the same story (it sounds remarkably like mine!). Those peds need a wake up call! My son just started his STARBand at 7 months, and he has severe flattening across the back. From what I have heard, the STARBand is a great product as long as you get a qualified orthotist to do the adjustments. As many people can tell you, the DOC band gets excellent results (and you don't have to do your own research on the orthotist because the band and orthotist are all through the same company... Cranial Technologies). There are also locally made helmets, and I don't have any information on those (but others in your area might speak up). I'm sure you'll get lots of posts about the different options, and about getting good correction at 10 1/2 months or even later.

Good luck!

Kia

-----Original Message-----From: lesakb [mailto:lesabretz@...]Sent: Wednesday, July 17, 2002 3:19 PMPlagiocephaly Subject: New here and I urgently need help!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,LesaFor more plagio info

[Guest guest]

Lesa, HI and welcome! Your story sounds so similar to ours. Our little Jessie

was 10 1/2 months old when I even realized there was a name for the flatness

on the right side of her head. Our ped told us exactly the same thing, that

it would round out on its own. She never mentioned plagiocephaly. When I

learned about the condition, through self research like yourself, I pushed

for the helmet. Our daughter was in a DOC band 2 weeks later at exactly 11

mos. Her ears were very misaligned and she was off 21 mm. on her cranial

vault measurement. She finished her 1st helmet 3 weeks ago and is now in her

2nd helmet. At this time her ears are almost completely in line and her

cranial vault assymetry has come down to 11mm. We hope to get it down to 5

mm. by the time we finish her 2nd helmet. I hope this gives you hope knowing

that it is not too late! Kaity has a wonderful and concerned mommy! Keep us

posted on what you decide, Theresa and Jessie

[Guest guest]

Lesa,

I haven't seen too many members in the St. Louis area, but my inlaws live

there. When we first started in with the banding procedure my mother-in-law

told me about a lady in her office who's child wore a headband that cost

only about $500. It was very successful. The DOC bands cost $3000, so I

did a little investigating. I found out that it was a locally made helmet

from a clinic on Euclid Ave. I'm going to dig through my huge pile of notes

and see if I can find the name and number for you, and if not I'll call my

in-laws and ask for it again. Have you made any other progress?

Gail, Sam and Sara's mom, DOC grads

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

> St. Louis area for this condition?

>

[Guest guest]

Lesa,

My daughter was banded (DOC Band) at 13 mo. We are now about 6 weeks

into treatment and have already seen improvement. ( We saw some

" softening " minor change in just 1 week, nothing earth shattering, but

improvement)I chose the DOC Band because of the highly skilled orthotists

and the lit. from Star seemed to indicate banding success on younger

babies. We went for a free consult at Cranial Tech., & I loved the OT.

We were told that the ears could be corrected with the band. These docs

are just not informed. Good for you for realizing the unacceptability of

it all. We chose to band (mod./severe) for ANY improvement, and I'll

never be sorry we did.

Good luck!

Ellen (Mom to Amy)

New Jersey

On Wed, 17 Jul 2002 19:19:03 -0000 " lesakb " <lesabretz@...>

writes:

> 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]

Dear ,

I have a four month old son with slight torticollis and plagiocephaly. I was on a mission as soon as my pediatrician diagnosed him at 3 months. Go with your gut and do whatever you can. You do still have time and from all my research the Doc band is probably the best fitting one and most productive. I did not go with the doc band and went with a more passive helmet. My son is still young and that is okay. What really improved his head shape and torticollis was a physical therapist who worked on him & did osteopathic techniques on him twice. The helmet had to get remolded the day after his 1st therapy session. Be aggresive and know that you do know what is best for your child. Good luck. If you are near the NY area I can help you with recommendations.

Anastasia (mommy to Artemios)

lesakb <lesabretz@...> wrote: 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,LesaFor more plagio info

[Guest guest]

Hi Lesa

You should never be made to feel like you are over reacting when it comes to your child! You only want whats best for her!

I kind of had the same experience that you did. I seen a neurosurgeon who said would not benefit from a helmet & that his ears would remain misaligned even if I used the helmet! Well, I talked to the orthotist who makes them & he told me totally different info.

has been in a helmet for one month & has had 2 adjustments. We have seen improvement already!!!! The casting wasn't as bad as I thought it would be either.

has also had 4 months of physio for tort.

Hope this helps. Good Luck!

Joanne & (8 months)

BC, Canada

New here and I urgently need help!

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,LesaFor more plagio info

[Guest guest]

Lesa,

I swear we are all living the same lives out there! Your situation is so common for the ped to ignore the signs of plagio, and in some cases tort is not even diagnosed until after the plagio has been spotted. Don't feel bad for listening to your Doctor, they are the paid professionals, and your right, they make you feel like you are overreacting. You are a fantastic mom for doing your own homework and going against the grain. I too had to convince my ped on the helmet, and now she thinks it was the best decision and is forever complimenting his headshape! I would think at 10 months old, a DOC band, which is a dynamic band that applies mild (very mild) pressure or "hold" on the rounded areas so that the flatness can fill in where it needs to go would be your best bet for great correction. STARbands may be as well, but I am just not that familiar with them and I know others can chime in there. For sure start working on that tort- check into www.torticolliskids for great support, advice and tips on treating tort. I will also attach a link for you to incorporate stretches at home, and a hold that seperates that neck from the shoulder- you want to create "space" there where she is clamping down on the left and sucking that thumb (aww!). If I can help you in anyway with specific questions, please feel free to email me. Tort is a challenge to work with, and its a long process and it won't be an overnight thing, so be on top of it and work with her daily with stretches and monitor that posture so that she is always midline with props if need be. Good luck!

Stretches/ Hold

' Mom

DOC grad, tort resolved (monitoring it until 2 as it comes and goes when sick!)

[Guest guest]

Great post Theresa!

' Mom