's Mom

[Guest guest]

Hi!

I am sure you will get a million responses, but the weekends are slow so I wanted to reply as soon as possible! I went through the same thing you did. I had the same positioner and noticed at about 3 months that Trentyn's head was getting flat on one side. We took him to a neurosurgeon at 4 months who gave us the standard, "It will round on its' own..." He told us only seriously deformed children wore helmets...

At 11 months old, I became increasingly concerned, began researching the website and oh boy was I upset to find that I was almost out of the optimum treatment time. After having him seen again, I was told he had torticollis and severe plagio.

If you have concerns, don't wait. You can never go back and fix it later. CT is wonderful and will give you an honest opinion. If he is already flipping back and forth repositioning alone is not going to work, so the band may be a necessary solution for him.

Trentyn turned 13 months old today and we are hoping his band will arrive this week. Because we waited he will likely need two bands and will have a much longer treatment time than he would have at 4 months.

Good luck, we are all here to support you! This group has been an immeasurable source of support to me! Keep us updated on !

Jen- TXTrentyn- 1 DocBand fitting 06/17

From: hildama07206

Plagiocephaly

Sent: Sunday, June 08, 2003 10:18 PM

Subject: 's Mom

Hi, I'm new to this group. I'm not sure who this goes to. Maybe everyone. I haven't really had a chance to read all the details about this. I just need to have some peace of mind about what to do about my son's plagio. was born on 1/24/03. I registered for the head and back to sleep positioner and I put it in 's bassinett for about two weeks before I had him. It was all ready next to my bed. I knew that it was something I needed so that Matt wouldn't roll over to his belly and I read the box about the little pillow being there to prevent head flatness. At that point I didn't know it could happen so quickly.Matt used it for about two weeks. THen I took it away thinking that was the reason for his fussiness and crying. I thought it bothered him to sleep on it. BIG MISTAKE!!! I mean, I don't know if anyone else has used it and gotten good results. But I started to notice (all of a sudden, it seemed) that Matt's head was getting a little flat. BUt the first thing I thought was. It'll be ok. It will get round again as he gets older. I don't know where I heard that from but that's what i thought. At the same time my friend's baby was about 2-3 months old and she was concerned that his right side was flat. She questioned her doctor several times and he said that it would round out on its own. At her insistance he sent her for xrays and suddenly was in a whirlwind of physical therapy for torticollis and going to see a craniofacial team at St. ph's in Paterson, NJ. BUt her process took so long. She got the xrays in Feb. and only saw the craniofacial team in April, got her son's DOC band just one week ago. Well, back to . I went to my pediatrician when was two months old and she gave me an orthopedic surgeon and a neurosurgeon. I noticed that only wanted to look to the left. So, I went to see the orthopedic first and he said had mild torticollis. He said that as soon as he started moving his head around more, that he would be his own best therapy. Also we had to help him out by making him look more to the right and turn his head and also repositioning for the flatness. I felt great. I believed this wonderful man. I wanted my friend to see him so that he could tell her that her baby would be ok. BUt as time went on I started to read more stories on the computer, talked to more people, and I decided to see the neurosurgeon even though my pediatrician told me that they wouldn't want to see Matt until he was 5 months old anyway. When Matt turned 4 months I went to see the neurosurgeon. He basically told me that with or without the DOC band, Matt's head would round out. I asked him directly again and he said the same. He gave me a brochure for Cranial Tech. and said he would write a prescription if i wanted it. He said he was only off by 5. I didn't ask what he meant by that. I assume from reading stories that he meant 5 mm on his head. I did not go in with xrays of his skull, but I got them done as soon as I left his office. He wants to see me in a month but I want to go like tomorrow. I'm scared to wait too long and then Matt's head will still be flat and then he has to get the DOC band for longer. I'm kind of convincing myself to get the doc band because I don't want to regret it later on.Now Matt is turning from his stomach to his back all the time. THe other night I woke up at 3am and found him on his back. I have been putting him to sleep on his stomach for naps during the day for a while now. But for the past week, He sleeps on his stomach cuz he had a cold and was uncomfortable. Actually since I put him on his stomach, he sleeps better and longer. He always used to get up at 3 or 4 am. Now he sleeps until 6 or 6:30am has a bottle and goes back to sleep until 9am or longer.So now that he rolls over, it'll be hard to keep him off the flat.Well, this is so long I hope someone reads it. I feel like I'm racing against time in deciding helmet or not. I am going to call Cranial Tech tomorrow to get a free consultation and just to get another opinion. To me, Sometimes Matt's head looks good and other times it looks bad. But I took pictures last month and I'm going to do it this month too. Please, someone, write back. If I don't get messages back, my email is hildam@.... Gotta go, I'm a teacher and I work tomorrow. Matt's asleep finally so I better go too.For more plagio info

[Guest guest]

All I can say is that I have been exactly where you are, and I know

that you are in a very unsure place right now. Take comfort in

knowing that most of the moms (and dads) in this group have been in

a similar place. First of all, you are doing the right thing. Our

situations are very similar. We noticed left side flatness and

brought to doctors attention at 2 months, doctor said it would round

out...don't worry. 3 1/2 months, got pretty bad so we went to a

different doc and he diagnosed positional plagiocephaly with

possible accompanying torticollis. We tried repositioning and

stretches with some success. We decided to go for the DOCband

anyway. We are in our 3rd week with the band, and comparing his

head now to the mold of his head made at casting...big difference.

We made the right decision.

We went through the same thing...looking at different angles of his

head...saying to myself sometimes not too bad...sometimes not too

good. It doesn't help when the medical professionals are not

consistent or very informative about plagio and the DOCband. Some

doctors support it, some don't. The best thing you can do is to

educate yourself on this. Find out some of the factors that cause

plagio, the health risks associated with plagio, and how the

cranioplasty (DOCbanding) works.

Also, I would go ahead and have Cranial Technologies start the

insurance preapproval process, even if you haven't decided 100% that

you want to do the DOCband. It took 3 weeks to get word back from

our insurance company. Make sure the doctor that writes the

prescription and letter to your insurance knows that this a

medically necessary treatment. The insurance companies are a little

hesitant to approve orthotics like this. A really good resource to

check out is www.cappskids.org There is a lot of information there.

Taking pictures is a good idea. Get lots of angles (both sides,

front, back, and looking down on top of his head).

Please let us know how your appt. goes at Cranial Technologies.

Take heart, you are not alone. We're here for you =)

Joshy's mom

6mos banded 5/22/03

Check out my pictures in the photos section under Josh T

[Guest guest]

Hi,

Welcome to the group. Take for the free evaluation at Cranial

Tech. They will give you an honest opinion on his plagio and if he'd

benefit from a band. You're not that pressed for time, he'd still

get awesome correction if he were to be banded a month from now. It

is true though that the younger a baby is banded, the faster and

better the correction. Please let us know what Cranial Tech says.

--- In Plagiocephaly , " hildama07206 " <hildam@p...>

wrote:

> Hi, I'm new to this group. I'm not sure who this goes to. Maybe

> everyone. I haven't really had a chance to read all the details

about

> this. I just need to have some peace of mind about what to do about

> my son's plagio.

> was born on 1/24/03. I registered for the head and back to

> sleep positioner and I put it in 's bassinett for about two

> weeks before I had him. It was all ready next to my bed. I knew

that

> it was something I needed so that Matt wouldn't roll over to his

> belly and I read the box about the little pillow being there to

> prevent head flatness. At that point I didn't know it could happen

so

> quickly.

> Matt used it for about two weeks. THen I took it away thinking that

> was the reason for his fussiness and crying. I thought it bothered

> him to sleep on it. BIG MISTAKE!!! I mean, I don't know if anyone

> else has used it and gotten good results. But I started to notice

> (all of a sudden, it seemed) that Matt's head was getting a little

> flat. BUt the first thing I thought was. It'll be ok. It will get

> round again as he gets older. I don't know where I heard that from

> but that's what i thought. At the same time my friend's baby was

> about 2-3 months old and she was concerned that his right side was

> flat. She questioned her doctor several times and he said that it

> would round out on its own. At her insistance he sent her for xrays

> and suddenly was in a whirlwind of physical therapy for torticollis

> and going to see a craniofacial team at St. ph's in Paterson,

NJ.

> BUt her process took so long. She got the xrays in Feb. and only

saw

> the craniofacial team in April, got her son's DOC band just one

week

> ago.

> Well, back to . I went to my pediatrician when was

two

> months old and she gave me an orthopedic surgeon and a

neurosurgeon.

> I noticed that only wanted to look to the left. So, I went

> to see the orthopedic first and he said had mild

torticollis.

> He said that as soon as he started moving his head around more,

that

> he would be his own best therapy. Also we had to help him out by

> making him look more to the right and turn his head and also

> repositioning for the flatness. I felt great. I believed this

> wonderful man. I wanted my friend to see him so that he could tell

> her that her baby would be ok. BUt as time went on I started to

read

> more stories on the computer, talked to more people, and I decided

to

> see the neurosurgeon even though my pediatrician told me that they

> wouldn't want to see Matt until he was 5 months old anyway. When

Matt

> turned 4 months I went to see the neurosurgeon.

> He basically told me that with or without the DOC band, Matt's head

> would round out. I asked him directly again and he said the same.

He

> gave me a brochure for Cranial Tech. and said he would write a

> prescription if i wanted it. He said he was only off by 5. I

didn't

> ask what he meant by that. I assume from reading stories that he

> meant 5 mm on his head. I did not go in with xrays of his skull,

but

> I got them done as soon as I left his office. He wants to see me in

a

> month but I want to go like tomorrow. I'm scared to wait too long

and

> then Matt's head will still be flat and then he has to get the DOC

> band for longer. I'm kind of convincing myself to get the doc band

> because I don't want to regret it later on.

> Now Matt is turning from his stomach to his back all the time. THe

> other night I woke up at 3am and found him on his back. I have been

> putting him to sleep on his stomach for naps during the day for a

> while now. But for the past week, He sleeps on his stomach cuz he

had

> a cold and was uncomfortable. Actually since I put him on his

> stomach, he sleeps better and longer. He always used to get up at 3

> or 4 am. Now he sleeps until 6 or 6:30am has a bottle and goes back

> to sleep until 9am or longer.

> So now that he rolls over, it'll be hard to keep him off the flat.

> Well, this is so long I hope someone reads it. I feel like I'm

racing

> against time in deciding helmet or not. I am going to call Cranial

> Tech tomorrow to get a free consultation and just to get another

> opinion. To me, Sometimes Matt's head looks good and other times it

> looks bad. But I took pictures last month and I'm going to do it

this

> month too. Please, someone, write back. If I don't get messages

> back, my email is hildam@p... Gotta go, I'm a teacher and I

> work tomorrow. Matt's asleep finally so I better go too.

[Guest guest]

Welcome to the group. is still at age to get wonderful correction. If you have the instinct to get him evaluated again, go with your gut feeling. If CT offers free evLUATIONS, I would take him in. In the mean time, I would keep repositioning him. You can get correction with repositiong. But with him rolling over now repositioning may be more of a challenge. There are also stretches to do for his mild tort. I'm sure someone will chime in about those.

My daughter was banded at 9 months and received around 80% correction in 12 weeks. Although, the younger a baby is banded usually the faster the correction since they are growing at a faster rate.

I'm sure you will get many replies. This is a wonderful and supportive group!

Angie and jenna(STARband grad 1/21/03)

's Mom

Hi, I'm new to this group. I'm not sure who this goes to. Maybe everyone. I haven't really had a chance to read all the details about this. I just need to have some peace of mind about what to do about my son's plagio. was born on 1/24/03. I registered for the head and back to sleep positioner and I put it in 's bassinett for about two weeks before I had him. It was all ready next to my bed. I knew that it was something I needed so that Matt wouldn't roll over to his belly and I read the box about the little pillow being there to prevent head flatness. At that point I didn't know it could happen so quickly.Matt used it for about two weeks. THen I took it away thinking that was the reason for his fussiness and crying. I thought it bothered him to sleep on it. BIG MISTAKE!!! I mean, I don't know if anyone else has used it and gotten good results. But I started to notice (all of a sudden, it seemed) that Matt's head was getting a little flat. BUt the first thing I thought was. It'll be ok. It will get round again as he gets older. I don't know where I heard that from but that's what i thought. At the same time my friend's baby was about 2-3 months old and she was concerned that his right side was flat. She questioned her doctor several times and he said that it would round out on its own. At her insistance he sent her for xrays and suddenly was in a whirlwind of physical therapy for torticollis and going to see a craniofacial team at St. ph's in Paterson, NJ. BUt her process took so long. She got the xrays in Feb. and only saw the craniofacial team in April, got her son's DOC band just one week ago. Well, back to . I went to my pediatrician when was two months old and she gave me an orthopedic surgeon and a neurosurgeon. I noticed that only wanted to look to the left. So, I went to see the orthopedic first and he said had mild torticollis. He said that as soon as he started moving his head around more, that he would be his own best therapy. Also we had to help him out by making him look more to the right and turn his head and also repositioning for the flatness. I felt great. I believed this wonderful man. I wanted my friend to see him so that he could tell her that her baby would be ok. BUt as time went on I started to read more stories on the computer, talked to more people, and I decided to see the neurosurgeon even though my pediatrician told me that they wouldn't want to see Matt until he was 5 months old anyway. When Matt turned 4 months I went to see the neurosurgeon. He basically told me that with or without the DOC band, Matt's head would round out. I asked him directly again and he said the same. He gave me a brochure for Cranial Tech. and said he would write a prescription if i wanted it. He said he was only off by 5. I didn't ask what he meant by that. I assume from reading stories that he meant 5 mm on his head. I did not go in with xrays of his skull, but I got them done as soon as I left his office. He wants to see me in a month but I want to go like tomorrow. I'm scared to wait too long and then Matt's head will still be flat and then he has to get the DOC band for longer. I'm kind of convincing myself to get the doc band because I don't want to regret it later on.Now Matt is turning from his stomach to his back all the time. THe other night I woke up at 3am and found him on his back. I have been putting him to sleep on his stomach for naps during the day for a while now. But for the past week, He sleeps on his stomach cuz he had a cold and was uncomfortable. Actually since I put him on his stomach, he sleeps better and longer. He always used to get up at 3 or 4 am. Now he sleeps until 6 or 6:30am has a bottle and goes back to sleep until 9am or longer.So now that he rolls over, it'll be hard to keep him off the flat.Well, this is so long I hope someone reads it. I feel like I'm racing against time in deciding helmet or not. I am going to call Cranial Tech tomorrow to get a free consultation and just to get another opinion. To me, Sometimes Matt's head looks good and other times it looks bad. But I took pictures last month and I'm going to do it this month too. Please, someone, write back. If I don't get messages back, my email is hildam@.... Gotta go, I'm a teacher and I work tomorrow. Matt's asleep finally so I better go too.For more plagio info

[Guest guest]

Hi 's mom,

Your post sounds so similar to my feelings when I started, just so depressed that all of this comes at you at once and your scared and unsure about all of it. I cried all the way home after my son was dx with tort by my ped. It is soooo hard to help a tort baby stay off that flat spot, they are physically unable to help themselves pull back away from that shoulder, the muscle is just too tight to allow it! Hindsight is always 20/20, and if I knew that not even one minute should be spent on the back of the head on that flat spot, that it was THAT critical, maybe I could have checked him every 2 minutes instead of every 5- but life is not always that easy or allowing. It's not easy, and to say that you have failed is not saying you didn't try your best as you knew it then, now as time goes on you can look back with a different perspective, but while your going through it, your doing all you can and your trying your hardest to get the job done- thank God there are options like bands/helmets to help out when repo fails! It's not easy to be tough all the time either, and brave the world and all the stares and comments with the helmet, people may think there is something mentally wrong with your child, sure. But the beauty of that, is knowing for yourselves how lucky you REALLY are, that this is so small in the big picture, and that you are one great mom to brave the world, fight for treatment and get the job done because you care so much about . You'll do just fine, once the helmet comes in and your journey is under way, you'll see that the idea of it was much worse than the actual process itself. Be diligent with those stretches, get into a routine and remind yourself that the next few months will be tough in terms of sheer exhaustion of appts. and stretching, but it will get easier as more time is under your belt and the tort starts reaching resolve. Keep your chin up, you have us parents here who have been there, going there, or right with you in the process every step of the way, feel free to vent here anytime, chances are most of us have felt those same things you are! Good luck to you and don't worry too much about family, either you be brave for them, or watch them come around when the band comes in and rally behind you like my parents did after telling me not to bother with it. Hang in there and a big cyber hug comin' at ya! )

nicholas'mom

[Guest guest]

On Wed. my husband, and I went to CT. I thought they would

say he wasn't that bad. But it was kind of depressing. She said his

ear was starting to shift. One side of his head was a little higher

than the other. Something with the eye starting to slope down. And he

had a tilt from the torticollis. I know that they are trained to see

these things. But is good at holding his head up. Since he was

born I remember having to hold him tight all the time because he would

try to lift his head.

Well, anyway. We are going to get the band. I don't really want to.

But I figure better do it now than regret it later on. My

pediatrician, who is a sweetheart, told me that I could still wait a

little bit to see if it starts to correct itself. THere are other

babies at my pediatrician who have the helmet. But I told her that I

just wanted her to write me the prescription to get the pre approval

from ins. so I wouldn't have to wait if I do decide to get it.

I could have faxed the prescription yesterday but I got home and I was

just so depressed about all of this. I am going to be a wreck when I

have another baby. I think I'm going to carry him/her all the time so

that nothing happens to their head.

I just don't understand why this happens to some babies and not

others. I understand with the torticollis, they tend to look and sleep

to one side. Like Matt, always slept with his head facing left. That's

what did it. And I was so scared in the beginning to get him used to

being carried all the time, I was always trying to get him used to

being in seats, and the crib. If I would have known, I would have

carried him more.

In July, we have my cousin's wedding. I don't want him to have it on

all the time. There are going to be people there that will be making

assumptions. They'll probably think he's handicapped or something. I

figure, when he falls asleep, I'll put it on. Or maybe I just won't

stay the whole time. My mother already said, " You're not going to put

it on for 's wedding, are you? " I said, " I don't know. "

Well, I'll keep everyone updated.

[Guest guest]

Cheer up!!

I too remember feeling just how you feel right now. Please, don't beat yourself up over any of this! I just got done saying, some babies develop plagio wehre others who spend every bit as much time, if not more on their backs as our babies have, why don't they get it too? Or why do OUR babies get it? Who knows?!

It's hard to hear from someone else like the clinician, yes his head is flat, even though you know it's flat and expect to hear it from the professionals, there's still that little bit inside you praying they'll tell you "you're crazy, his head is just fine!"...been there!!!

And once you get him in the band, you'll be surprised at how oblivious to him in it you AND your family will become. Yes, you'll get stares and maybe some rude comments out in public, but remind yourself, you'd probably stare at a banded baby too if you didn't know what it was for, right?! Just human nature to stare at something "different".

Keep your chin up!! This will all be done & over with before you know it. When you take to the wedding next month, decorate it in a wedding theme, or put "congratulations bride & groom (there names)" on the band to lighten the mood and the stares, everyone would surely get a kick out of it!! Hang in there. Let us know when you fax the rx over, eek!!!

Debbie Abby's mom DOCGrad MI hildama07206 <hildam@...> wrote:

On Wed. my husband, and I went to CT. I thought they would say he wasn't that bad. But it was kind of depressing. She said his ear was starting to shift. One side of his head was a little higher than the other. Something with the eye starting to slope down. And he had a tilt from the torticollis. I know that they are trained to see these things. But is good at holding his head up. Since he was born I remember having to hold him tight all the time because he would try to lift his head.Well, anyway. We are going to get the band. I don't really want to. But I figure better do it now than regret it later on. My pediatrician, who is a sweetheart, told me that I could still wait a little bit to see if it starts to correct itself. THere are other babies at my pediatrician who have the helmet. But I told her that I just wanted her to write me the prescription to get the pre approval from ins. so I wouldn't have to wait if I do decide to get it. I could have faxed the prescription yesterday but I got home and I was just so depressed about all of this. I am going to be a wreck when I have another baby. I think I'm going to carry him/her all the time so that nothing happens to their head. I just don't understand why this happens to some babies and not others. I understand with the torticollis, they tend to look and sleep to one side. Like Matt, always slept with his head facing left. That's what did it. And I was so scared in the beginning to get him used to being carried all the time, I was always trying to get him used to being in seats, and the crib. If I would have known, I would have carried him more.In July, we have my cousin's wedding. I don't want him to have it on all the time. There are going to be people there that will be making assumptions. They'll probably think he's handicapped or something. I figure, when he falls asleep, I'll put it on. Or maybe I just won't stay the whole time. My mother already said, "You're not going to put it on for 's wedding, are you?" I said, "I don't know."Well, I'll keep everyone updated.

[Guest guest]

Please don't beat yourself up over this. I reacted the same way you

did. We took Ethan to an orthotist for an honest opinion and I

thought he would tell us that it wasn't that bad. Instead he pointed

out areas I hadn't noticed!!! My husband was there, and in some

ways I know he thinks it is my fault (he has never said as much, but

it is a feeling that I get). I cried the whole way home.

Ethan has been in his band for 3 weeks and he is doing great. We

get lots of stares (there are no banded babies in our area) and now

I don't even notice or care. The first few days were tough, but you

get immune to it pretty quick.

We took Ethan to a birthday party in his band and the kids were

great. The parents on the other hand weren't as nice - it was

tough, but I know I am doing the best think for my child and I don't

want to have any regrets.

I hope it all goes well for you - take care

, mom to Ethan

Vancouver, BC

--- In Plagiocephaly , " hildama07206 " <hildam@p...>

wrote:

> On Wed. my husband, and I went to CT. I thought they

would

> say he wasn't that bad. But it was kind of depressing. She said

his

> ear was starting to shift. One side of his head was a little

higher

> than the other. Something with the eye starting to slope down. And

he

> had a tilt from the torticollis. I know that they are trained to

see

> these things. But is good at holding his head up. Since he

was

> born I remember having to hold him tight all the time because he

would

> try to lift his head.

> Well, anyway. We are going to get the band. I don't really want

to.

> But I figure better do it now than regret it later on. My

> pediatrician, who is a sweetheart, told me that I could still wait

a

> little bit to see if it starts to correct itself. THere are other

> babies at my pediatrician who have the helmet. But I told her that

I

> just wanted her to write me the prescription to get the pre

approval

> from ins. so I wouldn't have to wait if I do decide to get it.

> I could have faxed the prescription yesterday but I got home and I

was

> just so depressed about all of this. I am going to be a wreck when

I

> have another baby. I think I'm going to carry him/her all the time

so

> that nothing happens to their head.

> I just don't understand why this happens to some babies and not

> others. I understand with the torticollis, they tend to look and

sleep

> to one side. Like Matt, always slept with his head facing left.

That's

> what did it. And I was so scared in the beginning to get him used

to

> being carried all the time, I was always trying to get him used to

> being in seats, and the crib. If I would have known, I would have

> carried him more.

> In July, we have my cousin's wedding. I don't want him to have it

on

> all the time. There are going to be people there that will be

making

> assumptions. They'll probably think he's handicapped or something.

I

> figure, when he falls asleep, I'll put it on. Or maybe I just

won't

> stay the whole time. My mother already said, " You're not going to

put

> it on for 's wedding, are you? " I said, " I don't know. "

> Well, I'll keep everyone updated.