New member

Posted April 5, 2004 · April 5, 2004

All of his sutures are closed. The woman that did the casting was also surprised that the dr said it was okay because his head is still growing. I KNEW IT!!! They kept telling me his prematurity had NOTHING to do with it. Babies have the same chances of getting this condition whether they are born early or not. I knew they were wrong. Always have to follow your gutt when it comes to kids. The pediatrician didn't even think he would require a band. I'm not sure what type the band is. Like I said, they didn't give me a whole lot of information. I know they look like this www.cranialtech.com Luckily the clinic is only a few minutes from the house. From what I have been hearing too about the trouble with insurance coving the proceedure, I'm really thankful to be living in Canada where it's all covered. As for the casting not being fun. Yes I'm sure he has forgotten but his little arms are bruised from holding him down.

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "Debbie" <dj2kirby@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: New Member Date: Mon, 05 Apr 2004 12:04:19 -0000 Hi Angie & Welcome to our group: Prematurity IS indeed a leading cause of plagiocephaly. Babies skulls are even more soft & malleable when born prematurely, as well as the way they are often positioned in the NICU often plays a role in developing positional plagio. What type of helmet was Bru casted for? Castings aren't much fun, but they are quick & painless and I'm sure Bru has long forgotten about the process The one eye smaller is a typical plagio sign and happens to many of our babies. Was it only the fontanel soft spot that was prematurely fused on Bru? Or are more of his sutures already fused? What have your Drs said about this? Often, if bones are prematurely fused, the only way to correct this would be thru surgery and the bands won't provide correction. The condition is "craniosynostosis". I hope the band will help Bru! Please keep us posted. Welcome again. Debbie > > Hi, first let me introduce myself. My name is Angie and I have 5 > > children. The oldest being my husband! Anyways...my youngest son > is > > being fitted for a band on the 19th. His casting was very > traumatic > > for me. I wasn't at all prepared for what he went through! Bru > > started out life rough. He was born at 33 weeks and I'm still > > covinced that his prematurity had something to attribute to this, > > although I've been told otherwise. He also was born without any > > softspots. Bru has gone for xrays and we have ruled out surgery > > although the plates in his head have fused, it's still growing on > > schedule. The back of his head nearly lines up with his neck and > he's > > flattened more on the left side in the back. Thus causeing the > right > > front side of his head to be pushed in somewhat. The dr even told > me > > something I had never noticed before. Because the left side is > flat > > in the back, the right front had to compensate I guess, thus > making > > his right eye smaller then his left. Anyone else hear of this or > have > > gone through this kind of correction? I am open to every piece of > > information I can get my hands on.... Open your e-mail without having to worry about viruses With MSN Premium Get 2 Months FREE*

Posted April 5, 2004 · April 5, 2004

No, the band won't do anything to the plates, just the head shape. Like I have replied already, we ruled out the possiblility of surgery, and the dr didn't even believe that he needed the helmut!!! I'm thinking now I may take him in to my GP and get a second opinion...

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "Ana B. Castro" <anniecastro1971@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: New Member Date: Mon, 05 Apr 2004 12:19:10 -0000 Hello Angie and welcome to our group. I have the same questions Natasha already asked you in her reply... But I want to share part of my story with you. Im the mother of twin boys who will turn 10 months old this thursday. They were born at 34 weeks and had to spend 17 days at NICU. Ignacio, who was baby A, was born with a flat spot in the back right side of his head. It was caused by the position he acquired inside my uterus and due to the fact that his brother was sitting on top of him for the last 13 weeks of the pregnancy. We asked the doctors about the flatness and they told us not to worry... that it will round on its own. Well... when Ignacios was two and a half months old his flatness was worse. It wasn't until his four month check up that the ped mentioned he might have torticollis and that it was the cause of the flatness not to be dissapearing. Since we weren't happy with his performance we change peds and the first thing the new ped did was some X-Rays and he also referred us to a neurosurgeon to rule out cranio. Thanks God it wasnt cranio so we ruled out surgery and we decided to get the band treatment. We also got some physical therapy for his tort and, at present, it is resolved. Ignacio started his band treatment at six months old (adjusted age 4 and a half) and we are still on treatment. We have gotten some very good results although we new from the beginning we would not get the "perfect round head" since his sutures are impacted downward and the only way to push them up is with surgery. We just celebrated our four month in the band withou any complications and we are looking forward to his graduation which, I think, could be some time around his first birthday. Regharding your concerns that his prematurity could had something to do with his plagio... I've read that premature babies are at greater risk of developing plagio. Why??? Their skulls are really soft and premmies don't move around too much so their heads are most of the time in the same position. Also, the time they spent at NICU can contribute... if your son stayed at NICU you would probably had the same experience I had which was that he was in the same position every time I went to see him. Im no expert on this but I have my doubts on how the band treatment will work out for Bru since his sutures are already fused. What did they explain you??? Annie Mom to twins, Ignacio (DOC 12/2/03 & 2/17/04) and San , PR > Hi, first let me introduce myself. My name is Angie and I have 5 > children. The oldest being my husband! Anyways...my youngest son is > being fitted for a band on the 19th. His casting was very traumatic > for me. I wasn't at all prepared for what he went through! Bru > started out life rough. He was born at 33 weeks and I'm still > covinced that his prematurity had something to attribute to this, > although I've been told otherwise. He also was born without any > softspots. Bru has gone for xrays and we have ruled out surgery > although the plates in his head have fused, it's still growing on > schedule. The back of his head nearly lines up with his neck and he's > flattened more on the left side in the back. Thus causeing the right > front side of his head to be pushed in somewhat. The dr even told me > something I had never noticed before. Because the left side is flat > in the back, the right front had to compensate I guess, thus making > his right eye smaller then his left. Anyone else hear of this or have > gone through this kind of correction? I am open to every piece of > information I can get my hands on.... Up to 11 personalized e-mail addresses With MSN Premium Get 2 months FREE*.

Posted April 5, 2004 · April 5, 2004

Thankyou...I didn't really expect this group to be so active. I am a stay at home mom with 2 babies under 2. I just hope I can keep up with you all.

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "" <julie.kenyon@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: New Member Date: Mon, 05 Apr 2004 12:30:33 -0000 HI Angie and welcome to the group. I see that others have already replied to many of your questions, and aked you a million more, so I will just stop here with this welcome. - mom to Aidan . > Hi, first let me introduce myself. My name is Angie and I have 5 > children. The oldest being my husband! Anyways...my youngest son is > being fitted for a band on the 19th. His casting was very traumatic > for me. I wasn't at all prepared for what he went through! Bru > started out life rough. He was born at 33 weeks and I'm still > covinced that his prematurity had something to attribute to this, > although I've been told otherwise. He also was born without any > softspots. Bru has gone for xrays and we have ruled out surgery > although the plates in his head have fused, it's still growing on > schedule. The back of his head nearly lines up with his neck and he's > flattened more on the left side in the back. Thus causeing the right > front side of his head to be pushed in somewhat. The dr even told me > something I had never noticed before. Because the left side is flat > in the back, the right front had to compensate I guess, thus making > his right eye smaller then his left. Anyone else hear of this or have > gone through this kind of correction? I am open to every piece of > information I can get my hands on.... Help protect your entire PC with Virus Guard from MSN Premium Get Two Months FREE*

Posted April 5, 2004 · April 5, 2004

I am in Calgary Alberta Canada. After reading some of the previous replies I think I will have Bru looked at again. Things just don't add up....

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "" <sarahhollis@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: New Member Date: Mon, 05 Apr 2004 14:49:33 -0000 Hi Angie, Welcome to the group. SOrry the casting was so traumatic, but it really is the worst part about the whole banding process. I'm confused at how Bru has had sutures close early, but they think a band will help without surgery. Have you thought about getting a second opinion? The facial assymetry is very common in plagio, as well as being born premature is a leading cause of plagio. Where are you located? , mom to Hannah, DOC #3 3/30 Cape Cod, Ma > Hi, first let me introduce myself. My name is Angie and I have 5 > children. The oldest being my husband! Anyways...my youngest son is > being fitted for a band on the 19th. His casting was very traumatic > for me. I wasn't at all prepared for what he went through! Bru > started out life rough. He was born at 33 weeks and I'm still > covinced that his prematurity had something to attribute to this, > although I've been told otherwise. He also was born without any > softspots. Bru has gone for xrays and we have ruled out surgery > although the plates in his head have fused, it's still growing on > schedule. The back of his head nearly lines up with his neck and he's > flattened more on the left side in the back. Thus causeing the right > front side of his head to be pushed in somewhat. The dr even told me > something I had never noticed before. Because the left side is flat > in the back, the right front had to compensate I guess, thus making > his right eye smaller then his left. Anyone else hear of this or have > gone through this kind of correction? I am open to every piece of > information I can get my hands on.... Share a single photo or an entire slide show right inside your e-mail With MSN Premium Get 2 Months FREE*

Posted April 6, 2004 · April 6, 2004

Yes we are going to that clinic. Its situated right in the Alberta Childrens Hospital. I consider us to be very fortunate!! After reading what you guys had to say yesterday about the plates I called his Pediatrician. He's on holidays but his secretary faxed his info to the hossy so they can see for themselfs. When I talked to the receptionist at the band clinic she was surprised that they casted him without seeing an xray first. Another unknown to me.... As far as she could tell from his charts...his plates aren't sealed. Which doesn't answer my question why he was born without any soft spots??? Dr's are confusing me and I don't think we are being told everything. I'll have to wait till his appointment before I'll get any more answers. This is becoming frusrating. I don't wanna him to have to go through another casting. His little arms are bruised from the first one....

Angie Baclawski

sunnyhaze2974 ----Original Message Follows---- From: "Debbie" <dj2kirby@...> Reply-Plagiocephaly Plagiocephaly Subject: Re: New Member Date: Mon, 05 Apr 2004 20:52:08 -0000 Angie: Are you actually going to Cranial Tech in Canada for the DOCband then? I think their only Canadian clinic is in Alberta. I hope the band will provide correction to his flattening, but from everything I've read in the past, if all the plates are closed already, the band will not produce any correction and surgery is often the only way to correct this I hope I'm not scaring you, but that's what I've always read in the past. You said you have been to http://www.cappskids.org right? Debbie > No, the band won't do anything to the plates, just the head shape. Like I have replied already, we ruled out the possiblility of surgery, and the dr didn't even believe that he needed the helmut!!! I'm thinking now I may take him in to my GP and get a second opinion... Up to 11 personalized e-mail addresses With MSN Premium Get 2 months FREE*.

Posted July 6, 2004 · July 6, 2004

They are not doing any more tests right now. Jennicah start physical therapy next week. After reading about tort, I feel she may have that as well. She is behind for her age, hates tummy time, and can barely lift her head. She seems to have a stiff neck and always prefers to look and lay one direction. I have talked to the physical therapist about this and hope she may have some answers with stretching as I have read here in some of the files. I hope she gets her helmet in time to make a difference. I have read that some babies are older when banded. I am not sure what kind she is getting. It is coming from Hanger Orthotics. She was casted a week and a half ago and it should come in this week. I will put some pics of her in her folder when she gets it as well. reading about ill fitting helmets, I hope things go well for us. She hated the casting process and screamed bloody murder for over 45 minutes. I hope the fitting goes better.

Posted July 6, 2004 · July 6, 2004

Hi sandy, thanks for responding. Jennicah will be 8 months old on July 16th. She was 5 weeks premature. I am curious to know more about tort. Do they always have to have the head tilt to have tort? She does not have that, but does not have any range to lift her head when she is on her tummy. She hates her tummy time and always will just scream. The casting took about a half hour, but the screaming lasted much longer than that. Poor little thing. She does not roll over from her back to tummy, but has rolled a few times from tummy to back. Usually on her tummy she just gets mad. I hope the helmet comes in this week. She was casted on the 25th of June.

Posted July 6, 2004 · July 6, 2004

Hello

Welcome to our group. I'm sorry to hear that your daughter is in

Iraq. My husband is in the military also, but thank God had not had

to go there yet. My brother in law was there for a year though.

Are they doing anymore tests on Jennicah to def rule out the fusing

of her sutures??? What type of band is she getting? I'm glad you

found us. This is a great site, with great folks.

Sandy Willow's mom

Germany

> My name is and I have temporary custody of my granddaughter

> Jennicah while my daughter is serving in Iraq with the Army

National

> Guard. Jennicah was originally diagnosed with craniosynostosis

after

> a cat scan. We have been to two neuro surgeons and we flew to San

> Diego for endo surgery with a cranial facial surgeon. Dr. Cohen

> feels it may just be plagio. It has been a long ride with this.

> Jennicah will be 8 months old on July 16th and we are awaiting our

> first helmet. Her head is very flat in the back and looks alot

like

> some of the pictures of children I have seen with plagio. I am

sure

> I will have alot of questions as we start this helmet therapy.

There

> is a question as to whether her sutures are partially fused or

not.

> We are going to helmet her for 5 months and see if it makes a

> difference. If not, we will be doing surgery. I will post

pictures

> of her head shape in the photos secion under Jennicah. Thanks so

> much and I look forward to reading stories and asking questions to

> you all who have been there before. Thanks

Posted July 6, 2004 · July 6, 2004

Hi ,

Welcome to the group. I checked out Jennicah's pics and it looks to

be like she has more of a brachycephlic head shape than a

plagiocephalic head shape. What sutures do the think may be fused?

What type of band/helmet will Jennicah be getting?

Please tell your daughter I said thank you for all she is doing for

our country.

> My name is and I have temporary custody of my granddaughter

> Jennicah while my daughter is serving in Iraq with the Army

National

> Guard. Jennicah was originally diagnosed with craniosynostosis

after

> a cat scan. We have been to two neuro surgeons and we flew to San

> Diego for endo surgery with a cranial facial surgeon. Dr. Cohen

> feels it may just be plagio. It has been a long ride with this.

> Jennicah will be 8 months old on July 16th and we are awaiting our

> first helmet. Her head is very flat in the back and looks alot

like

> some of the pictures of children I have seen with plagio. I am

sure

> I will have alot of questions as we start this helmet therapy.

There

> is a question as to whether her sutures are partially fused or

not.

> We are going to helmet her for 5 months and see if it makes a

> difference. If not, we will be doing surgery. I will post

pictures

> of her head shape in the photos secion under Jennicah. Thanks so

> much and I look forward to reading stories and asking questions to

> you all who have been there before. Thanks

Posted July 7, 2004 · July 7, 2004

Hi ,

Jennicah is absolutely adorable! Her head shape looks a lot like my

son's did before he started helmet therapy a month ago. You can see

his pictures in the Photos section under . I don't have any top

view pics but you can see from the side it's about the same. He has

brachy with a slight (VERY slight) assymetry, which makes him plagio

also. The helmet has worked wonders. Good luck to you and keep us

updated, this is a great group! I'm happy to answer any questions any

time.

Mia

09/22/03 - Brachy, tort, DOC banded 05/27/04

> My name is and I have temporary custody of my granddaughter

> Jennicah while my daughter is serving in Iraq with the Army

National

> Guard. Jennicah was originally diagnosed with craniosynostosis

after

> a cat scan. We have been to two neuro surgeons and we flew to San

> Diego for endo surgery with a cranial facial surgeon. Dr. Cohen

> feels it may just be plagio. It has been a long ride with this.

> Jennicah will be 8 months old on July 16th and we are awaiting our

> first helmet. Her head is very flat in the back and looks alot

like

> some of the pictures of children I have seen with plagio. I am

sure

> I will have alot of questions as we start this helmet therapy.

There

> is a question as to whether her sutures are partially fused or

not.

> We are going to helmet her for 5 months and see if it makes a

> difference. If not, we will be doing surgery. I will post

pictures

> of her head shape in the photos secion under Jennicah. Thanks so

> much and I look forward to reading stories and asking questions to

> you all who have been there before. Thanks

Posted July 8, 2004 · July 8, 2004

Stacey, yes she does seem to have a brachy head. I am learning more and more. I will tell my daughter you said that. That was very kind. I believe she is getting the star band from Hanger orthotics. I have to talk to the orthotist again. I guess I have to ask him alot more questions. This is all so new to me. in Washington

Posted August 20, 2004 · August 20, 2004

Hi Joanne. The great news for you is that you're doing the band

when Cameron is so young. You should see great correction at that

age in, hopefully, a short time. I'm sure his head is still growing

quickly. My son Dylan just finished with his Starband after 5

months and we started when he was 10 months old which is considered

late for any kind of band. We didn't see much growth due to his age

but are still happy with the results. I was devastated to hear that

Dylan would need a helmet and thought that I would never get used to

it. After about 6 weeks, I was so used to it that it was strange to

see him with it off. I stopped noticing if people were staring at

him in public too. It's amazing what you can get used to. You'll

probably find that Cameron won't mind it and it will be harder on

you at first than him. Trust me, the time will fly and when you're

done, you'll be so happy with the results.

Beth

MI

> Hi there! I have enjoyed reading all the emails, it has been very

informative for us. My name is Joanne, my son, is Cameron, 6 and

1/2 months old, and we will be receiving the DOC band this coming

week here in Phoenix. Cameron was diagnosed with torticollis L-SCM

and plagiocephaly. We started with aggressive repositioning around

8 weeks and by 12 to 15 weeks we began physical therapy and have

been going to a chiropractor who specializes in cranial sacral

therapy. Cameron's physical therapy will be discontinued shortly,

as his torticollis appears to be more or less resolved. Cam has

cranial distortion on the back right side and the forehead, cheek

and ear comes forward a bit on that right side. To many, it appears

mild, to the specialists, they say moderate. Cranial Tech tells us

8 weeks. I am a speech therapist and sought many opinions from

friends and colleagues who were OT, PT, and specialists. I had

hoped that we would see some reshaping on it's own and not have to

go with the DOC band. After seeing a craniofacial specialist, whom

I have the upmost respect for, we were finally " off the fence " with

our decision. I feel very committed to the DOC therapy now and look

forward to getting him in and out of the band asap.

> He was casted more than a week ago, and did so beautifully. He

was so layed back about it. I was a nervous wreck, on the other

hand. I hope this a good indication of how well he will adjust to

having it placed on him. I love having this group available and

have learned so much from all of you.

> Do any of you have any advice for a new Mom, Dad and baby

receiving the DOC band? Emotionally or information wise?

> When they say 8 weeks, does that mean 8 weeks for duration of

therapy, or does it mean longer? I hope to not do a second one!!

ugh!

> Looking forward to talking to you all.

> Joanne and Cameron

>

> >

> > >

> >

> > For more plagio info

Posted August 20, 2004 · August 20, 2004

Hi Joanne,

Welcome to the group. Cameron is in good hands. I so glad he did

well with the casting. I'm jealous, na cried. I'm inclined to

agree with you if casting didn't phase him neither will the band.

Being in AZ I think your #1 concern is going to be heat. When you

first get the band you may want to dress him in less, i.e. onesie no

socks, or just a diaper (depending on how cool you keep the house).

They will give you care instructions. They wil also tell you how to

check for proepr fit. During the first few days you take it off

every few hours to check for red spots (pressure marks). If you see

any you should not be alarmed. They should go away within an hour if

not you will be instructed to call the office.

To help with the emotions get some stickers or paint. We have a

whole file folder on decorating (when on the board look to the left

for the files link). It helps soooo much. It makes it " fun " and not

medical. Pick a theme, go shopping before the big day and be ready.

You can decorate it in the first couple of days while he is getting

used to it.

And as always if you have any questions, concerns, frustrations, good

news, or pictures feel free to post away.

mom to na

DOC Grad

SC

> Hi there! I have enjoyed reading all the emails, it has been very

informative for us. My name is Joanne, my son, is Cameron, 6 and 1/2

months old, and we will be receiving the DOC band this coming week

here in Phoenix. Cameron was diagnosed with torticollis L-SCM and

plagiocephaly. We started with aggressive repositioning around 8

weeks and by 12 to 15 weeks we began physical therapy and have been

going to a chiropractor who specializes in cranial sacral therapy.

Cameron's physical therapy will be discontinued shortly, as his

torticollis appears to be more or less resolved. Cam has cranial

distortion on the back right side and the forehead, cheek and ear

comes forward a bit on that right side. To many, it appears mild, to

the specialists, they say moderate. Cranial Tech tells us 8 weeks.

I am a speech therapist and sought many opinions from friends and

colleagues who were OT, PT, and specialists. I had hoped that we

would see some reshaping on it's own and not have to go with the DOC

band. After seeing a craniofacial specialist, whom I have the upmost

respect for, we were finally " off the fence " with our decision. I

feel very committed to the DOC therapy now and look forward to

getting him in and out of the band asap.

> He was casted more than a week ago, and did so beautifully. He was

so layed back about it. I was a nervous wreck, on the other hand. I

hope this a good indication of how well he will adjust to having it

placed on him. I love having this group available and have learned

so much from all of you.

> Do any of you have any advice for a new Mom, Dad and baby receiving

the DOC band? Emotionally or information wise?

> When they say 8 weeks, does that mean 8 weeks for duration of

therapy, or does it mean longer? I hope to not do a second one!!

ugh!

> Looking forward to talking to you all.

> Joanne and Cameron

>

> >

> > >

> >

> > For more plagio info

Posted August 20, 2004 · August 20, 2004

Hi Joanne,

Welcome to the group!!

Sounds like you are on the ball!! You are going to be very pleased

with your decision to band Cameron (nice name by the way :-). He

sounds like a little trouper. If he can go through the casting like

that, then he'll adjust to this band just fine. Just remember to keep

him cool. It gets hella hot out there and it takes some time for

their little internal thermometers to adjust. At first, you'll notice

a lot of sweating, but that will slow down after a little while. When

Makenna was banded, I would just take off her helmet periodically and

wipe her forehead down and dress her lightly (not to mention, keep

her in air conditioning).

Makenna didn't have a DOCband, so I am not 100% sure what they mean

by 8 weeks. I don't know if they anticipate the correction to take

that long, or if they think the band will fit him that long. I am

sure a DOCband parent will chime in. Makenna had a local helmet for 6

months!! That was a long time :-)

You and Cameron are going to do great and it will be over before you

know it. Please keep us posted.

, mom to Makenna, LLUMC Helmet grad '03 and Cameron 6yrs.