Re: Just Diagnosed/casted

[Guest guest]

My daughter Tatijana is 20m months old and has been in a DOC band since

January 29, She has had wonderful progress but prior to getting the band we

went through two CT scans with sedation. The first one was done on her

first birthday and the second about 3 months after. I can tell you what

they did during her sedation. We are military and had them done in a

military hospital so it may vary some I am not sure. We had a presedation

checkup with our ped and then went to the pediatric floor int he hospital to

get acquainted with the nurses there. On the day of her CT scan we got to

the hospital about two to three hours early and she got used to being in the

hospital room. We were told to sleep depriver her and she couldn't eat

starting about 4 or 5 hours before her sedation. They came in about 30

minutes before her scheduled CT time and gave her a liquid to drink that

sedated her. Then left us alone until she was asleep once she was asleep

they hooked her up to a pulse/ox monitor and wheeled her down to the CT

area. The CT took about 10 - 15 minutes then we went back up to her room.

We stayed there until she had woken up and was able to keep juice and some

food down. Then they discharged her and we came home. At home we had to

make sure that she didn't walk on her own and was not climbing on things

without someone right next to her because she was still really woosy. It

was really funny to watch her at home trying to walk. It was almost like

she was drunk. I hope this helps some.

Johanna Tatijana's mom NC 06/26/99 banded 01/29/01

>From: SGIB2001@...

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Just Diagnosed/casted

>Date: Tue, 13 Mar 2001 03:53:05 -0000

>

>Hello all!

>

>I am so new to this. I have a 4mo son and he is so wonderful. I

>just was told today that he has severe Plagiocephaly. He was casted

>for a helmet or band thing and I was so overwhelmed with the whole

>situation that I didn't even get an explaination of what this thing

>is or does, except that it is supposed to help return my son's head

>to a normal or almost normal shape.

>

>They told me that he would have to wear it at least 3 months for 23

>hours a day and that it could be as long as 7 months. I've been

>reading the boards on several different sites and everyone is talking

>about DOC and STAR. How do I know what my baby is going to get and

>how do I know what is best for his situation.

>

>Also, I was so taken back by the casting. I can't believe that there

>isn't another way to get an acurate casting of his head besides

>covering his entire head with plaster! I thought maybe they would

>use the same type of material they used for casting my feet for my

>orthodics.

>

>I don't know what to expect when we get our helmet/band in two

>weeks...they have to send the casting out to FL to get it made. My

>son hates hats so this should be fun.

>

>Another thing...they are doing a MRI brain scan with sedation. Has

>anyone had any experiences with this??

>

>Thanks!

>Stasia/Pennsylvania

>

_________________________________________________________________

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[Guest guest]

Johanna -

Thanks for the information. It is a scary thing having them put your

child to sleep. I am comforted in knowing that I will probably be

able to stay in the room with my son while he falls asleep.

Stasia

--- In Plagiocephaly@y..., " johanna krebsbach " <tatismom20@h...>

wrote:

> My daughter Tatijana is 20m months old and has been in a DOC band

since

> January 29, She has had wonderful progress but prior to getting

the band we

> went through two CT scans with sedation. The first one was done on

her

> first birthday and the second about 3 months after. I can tell you

what

> they did during her sedation. We are military and had them done in

a

> military hospital so it may vary some I am not sure. We had a

presedation

> checkup with our ped and then went to the pediatric floor int he

hospital to

> get acquainted with the nurses there. On the day of her CT scan we

got to

> the hospital about two to three hours early and she got used to

being in the

> hospital room. We were told to sleep depriver her and she couldn't

eat

> starting about 4 or 5 hours before her sedation. They came in

about 30

> minutes before her scheduled CT time and gave her a liquid to drink

that

> sedated her. Then left us alone until she was asleep once she was

asleep

> they hooked her up to a pulse/ox monitor and wheeled her down to

the CT

> area. The CT took about 10 - 15 minutes then we went back up to

her room.

> We stayed there until she had woken up and was able to keep juice

and some

> food down. Then they discharged her and we came home. At home we

had to

> make sure that she didn't walk on her own and was not climbing on

things

> without someone right next to her because she was still really

woosy. It

> was really funny to watch her at home trying to walk. It was

almost like

> she was drunk. I hope this helps some.

>

> Johanna Tatijana's mom NC 06/26/99 banded 01/29/01

>

> >From: SGIB2001@h...

> >Reply-Plagiocephaly@y...

> >Plagiocephaly@y...

> >Subject: Just Diagnosed/casted

> >Date: Tue, 13 Mar 2001 03:53:05 -0000

> >

> >Hello all!

> >

> >I am so new to this. I have a 4mo son and he is so wonderful. I

> >just was told today that he has severe Plagiocephaly. He was

casted

> >for a helmet or band thing and I was so overwhelmed with the whole

> >situation that I didn't even get an explaination of what this thing

> >is or does, except that it is supposed to help return my son's head

> >to a normal or almost normal shape.

> >

> >They told me that he would have to wear it at least 3 months for 23

> >hours a day and that it could be as long as 7 months. I've been

> >reading the boards on several different sites and everyone is

talking

> >about DOC and STAR. How do I know what my baby is going to get and

> >how do I know what is best for his situation.

> >

> >Also, I was so taken back by the casting. I can't believe that

there

> >isn't another way to get an acurate casting of his head besides

> >covering his entire head with plaster! I thought maybe they would

> >use the same type of material they used for casting my feet for my

> >orthodics.

> >

> >I don't know what to expect when we get our helmet/band in two

> >weeks...they have to send the casting out to FL to get it made. My

> >son hates hats so this should be fun.

> >

> >Another thing...they are doing a MRI brain scan with sedation. Has

> >anyone had any experiences with this??

> >

> >Thanks!

> >Stasia/Pennsylvania

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Stasia,

So glad that you found the group and so sorry that you have to got through

this - but as you will find, it is so much easier with this support system in

place. I agree, it sounds like the STARband because they are made in FLA.

The DOC is made at a DOC clinic and a locally made helmet would be made

locally by the Orthotist. My son MAx is in his STARband since 2/19 - he is

almost 11 months old. You are lucky that it was caught so young. Do you have

any pictures that you can post / send? I would love to see your baby. Max

had a CT under sedation on 2/15, I thought it would be worse than it was.

They sedated him orally and he fell asleep in my arms. I wasn't allowed in

for the CT but I waited right outside the door. He was asleep for only about

3 hours total and when he woke, he was a bit cranky and had diarreah but he

was back to himself in the morning. Do they think that he may have

Craniosynostosis? Is that why the MRI?

You can answer a lot of questions at the CAPPS site.

Go to WWW.CAPS2000.org

Good luck - when is the MRI?

Amy (mom to Max)

[Guest guest]

In a message dated 3/12/01 7:55:39 PM Pacific Standard Time, SGIB2001@... writes:

I've been reading the boards on several different sites and everyone is talking about DOC and STAR. How do I know what my baby is going to get and how do I know what is best for his situation.

Stasia - I agree with Jess, sounds like the STAR. Make sure your orthotics person orders a head mold of your child's head. Makes it easier to compare and progress. Also don't forget to take before pictures to compare. I have had both STAR and DOC and have a picture of both to compare under the Tammy & file.

We also had a MRI and liquid sedation. Others have already posted and our experience was the same. Not so bad but highly recommend taking someone with you for support.

You should get results very fast since being treated so young. You are very fortunate. Good luck and keep us posted!

Tammy & 12/8/99

[Guest guest]

Hi Stasia, like the name. My name is Ranae, my son is nine months old and has

been in his helmet for about two months now. Stasia it's going to be O.K. we

have all went through this. My son is in the doc band I don't know much about

the star band but they will be someone in the group that will help you. If I

can help you in any way please let me know if I can't I know another mother

can. Here's what I know about the doc band. When you first get it you might

see red spots that might take longer to go away, if it takes more than an

hour to go away i would call the doc. and they sweat a lot in it and it

SMELLS. I know one mom has had a problem with her son taking it off. I hope

you want have that problem but if you do she can help you. Just post about it

you will get some help. Here is my e-mail address tggr909@... my number is

706-232-2413. Glad you join the group. Oh by the way my son is Spencer we

call him spenc. GOOD LUCK ````` RANAE

[Guest guest]

I have a 3 1/2 month old and I know what you are saying. It is an awful

thing to see you little one go through the casting. I have had the band for

a week and am still and have been back to the hospital for fittings several

times. I'm not so sure that the band works. I have been having a very hard

time keeping it in one place. Looking at it from an engineering point of

view I'm not so sure that it will ever be able to be kept in place.

The band is supposed to reshape your child's head by leaving a cavity where

the head is miss shaped. My first instructions were to keep it loose.

However since it moves around a lot, I have been back for many fittings and

now they tell me to keep it tight. It's a very frustrating thing.

Also my insurance company declined to pay " Blue Cross Blue Shield " .

I do hope it works for all of the discomfort it's putting my little guy

through.

We did not have to have an MRI. Is the doctor just being cautious? Also we

have the Star Band.

-----Original Message-----

From: SGIB2001@... [mailto:SGIB2001@...]

Sent: Monday, March 12, 2001 10:53 PM

Plagiocephaly

Subject: Just Diagnosed/casted

Hello all!

I am so new to this. I have a 4mo son and he is so wonderful. I

just was told today that he has severe Plagiocephaly. He was casted

for a helmet or band thing and I was so overwhelmed with the whole

situation that I didn't even get an explaination of what this thing

is or does, except that it is supposed to help return my son's head

to a normal or almost normal shape.

They told me that he would have to wear it at least 3 months for 23

hours a day and that it could be as long as 7 months. I've been

reading the boards on several different sites and everyone is talking

about DOC and STAR. How do I know what my baby is going to get and

how do I know what is best for his situation.

Also, I was so taken back by the casting. I can't believe that there

isn't another way to get an acurate casting of his head besides

covering his entire head with plaster! I thought maybe they would

use the same type of material they used for casting my feet for my

orthodics.

I don't know what to expect when we get our helmet/band in two

weeks...they have to send the casting out to FL to get it made. My

son hates hats so this should be fun.

Another thing...they are doing a MRI brain scan with sedation. Has

anyone had any experiences with this??

Thanks!

Stasia/Pennsylvania

[Guest guest]

Thank you for your kind words and information. I am so overwhelmed

at this point with all that is being thrown at me. When I brought my

son home, I thought he was just perfect, happy and healthy...now 4

months later I am having to take him to all these doctors and have

all these tests run...very scary.

Thanks again! Stasia

>

> Stasia - I agree with Jess, sounds like the STAR. Make sure your

orthotics

> person orders a head mold of your child's head. Makes it easier to

compare

> and progress. Also don't forget to take before pictures to

compare. I have

> had both STAR and DOC and have a picture of both to compare under

the Tammy &

> file.

>

> We also had a MRI and liquid sedation. Others have already posted

and our

> experience was the same. Not so bad but highly recommend taking

someone with

> you for support.

>

> You should get results very fast since being treated so young. You

are very

> fortunate. Good luck and keep us posted!

>

> Tammy & 12/8/99

[Guest guest]

I have been back for many fittings andnow they tell me to keep it tight.

This doesn't sound right to me. It doesn't sound like you are using a DOC Band, but just so you know, DOC Bands are NEVER supposed to be tightened! The Velcro should always just be folded over with NO pulling ( I think this same theory should apply to any band ). Do you know if this is a STARband or a locally made "passive type" helmet?

I would question your orthotist about this. If this is a STARband, or like, the band should be adjusted to fit your child's head with little growing space, and therefore many adjustment appts. If the band is new, it may take a week or so to grow into it, but given the very young age of your son (growing so fast), I would think the adjustment period should be finishing up by now. Maybe ask if a second (third?) orthotist can give an opinion on the situation?

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: suzannemisciagna

Plagiocephaly

Sent: Tuesday, March 13, 2001 6:06 AM

Subject: RE: Just Diagnosed/casted

I have a 3 1/2 month old and I know what you are saying. It is an awfulthing to see you little one go through the casting. I have had the band fora week and am still and have been back to the hospital for fittings severaltimes. I'm not so sure that the band works. I have been having a very hardtime keeping it in one place. Looking at it from an engineering point ofview I'm not so sure that it will ever be able to be kept in place.The band is supposed to reshape your child's head by leaving a cavity wherethe head is miss shaped. My first instructions were to keep it loose.However since it moves around a lot, I have been back for many fittings andnow they tell me to keep it tight. It's a very frustrating thing.Also my insurance company declined to pay "Blue Cross Blue Shield".I do hope it works for all of the discomfort it's putting my little guythrough.We did not have to have an MRI. Is the doctor just being cautious? Also wehave the Star Band.-----Original Message-----From: SGIB2001@... [mailto:SGIB2001@...]Sent: Monday, March 12, 2001 10:53 PMPlagiocephaly Subject: Just Diagnosed/castedHello all!I am so new to this. I have a 4mo son and he is so wonderful. Ijust was told today that he has severe Plagiocephaly. He was castedfor a helmet or band thing and I was so overwhelmed with the wholesituation that I didn't even get an explaination of what this thingis or does, except that it is supposed to help return my son's headto a normal or almost normal shape.They told me that he would have to wear it at least 3 months for 23hours a day and that it could be as long as 7 months. I've beenreading the boards on several different sites and everyone is talkingabout DOC and STAR. How do I know what my baby is going to get andhow do I know what is best for his situation.Also, I was so taken back by the casting. I can't believe that thereisn't another way to get an acurate casting of his head besidescovering his entire head with plaster! I thought maybe they woulduse the same type of material they used for casting my feet for myorthodics.I don't know what to expect when we get our helmet/band in twoweeks...they have to send the casting out to FL to get it made. Myson hates hats so this should be fun.Another thing...they are doing a MRI brain scan with sedation. Hasanyone had any experiences with this??Thanks!Stasia/Pennsylvania