Re: New To Plagio and Group

[Guest guest]

Hi,

Welcome to the group. I just want to second everything you've already

been told. Good luck w/the CT scan, let us know how you make out.

-- In Plagiocephaly , " Gardner Bland "

<lindsaygeebee@...> wrote:

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my efforts

> to prevent it. I saw my ped about it this week and she said it was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the possible

> effects of radiation. Did anyone else have these concerns? I wish

> that we could see the specialist for him to examine her first before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

Hi,

Welcome to the group. I just want to second everything you've already

been told. Good luck w/the CT scan, let us know how you make out.

-- In Plagiocephaly , " Gardner Bland "

<lindsaygeebee@...> wrote:

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my efforts

> to prevent it. I saw my ped about it this week and she said it was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the possible

> effects of radiation. Did anyone else have these concerns? I wish

> that we could see the specialist for him to examine her first before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

:

It seems from your responses so far that every office has a

different protocol. I will tell you that where I live the ped.

neuro surgeons see the babies first and then only order the x-ray or

CT if they have a concern. Basically, the explanation we got is that

they look at so many heads that in many cases they can rule out

fusion without the need for scans (and sedation). If they have any

doubt at all, they order it after the first visit. Have you been to

the CAPPS website? They have a lot of information on

craniosynostosis and some links on how to distinguish it from

positional deformation. The " look " of cranio is very distinctive,

especially to an experienced doctor. I know it is hard and that

some of these doctors are little intimidating, but I really think

you could call and just refuse the scan until your baby is seen. I

was also told that in experienced radiologist groups they can

sometimes get the scan without sedation and even if the sedation is

necessary, it is generally not a big deal at all.

I hope that helps--we were on pins and needles for awhile waiting

for the doctor to rule out cranio.

Stacey

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my

efforts

> to prevent it. I saw my ped about it this week and she said it

was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots

on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the

possible

> effects of radiation. Did anyone else have these concerns? I

wish

> that we could see the specialist for him to examine her first

before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm

really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

:

It seems from your responses so far that every office has a

different protocol. I will tell you that where I live the ped.

neuro surgeons see the babies first and then only order the x-ray or

CT if they have a concern. Basically, the explanation we got is that

they look at so many heads that in many cases they can rule out

fusion without the need for scans (and sedation). If they have any

doubt at all, they order it after the first visit. Have you been to

the CAPPS website? They have a lot of information on

craniosynostosis and some links on how to distinguish it from

positional deformation. The " look " of cranio is very distinctive,

especially to an experienced doctor. I know it is hard and that

some of these doctors are little intimidating, but I really think

you could call and just refuse the scan until your baby is seen. I

was also told that in experienced radiologist groups they can

sometimes get the scan without sedation and even if the sedation is

necessary, it is generally not a big deal at all.

I hope that helps--we were on pins and needles for awhile waiting

for the doctor to rule out cranio.

Stacey

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my

efforts

> to prevent it. I saw my ped about it this week and she said it

was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots

on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the

possible

> effects of radiation. Did anyone else have these concerns? I

wish

> that we could see the specialist for him to examine her first

before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm

really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

Hello . I just wanted to let you know that my Daughter,

, had a 2D AND 3D Ct scan when she was 6 months old. Many

doctor's like to do one to rule out craniosynostosis before they will

prescribe a band. It was really not a big deal... was sedated

with an oral sedative. She drank it was asleep in about 5 minutes.

The CT scan then took about 5-10 minutes and then she slowly woke up

and had to drink some apple juice/clear liquid and we went home. To

be honest, the preparing for the scan took MUCh longer than the

actual scan. (the Dr exam, prepping her, gaving her the medicine,

etc.)

Good luck and keep us updated.

Jen

(18 mo), Hanger Band Grad

(4 years)

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my efforts

> to prevent it. I saw my ped about it this week and she said it was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the

possible

> effects of radiation. Did anyone else have these concerns? I wish

> that we could see the specialist for him to examine her first

before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm

really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

Hello . I just wanted to let you know that my Daughter,

, had a 2D AND 3D Ct scan when she was 6 months old. Many

doctor's like to do one to rule out craniosynostosis before they will

prescribe a band. It was really not a big deal... was sedated

with an oral sedative. She drank it was asleep in about 5 minutes.

The CT scan then took about 5-10 minutes and then she slowly woke up

and had to drink some apple juice/clear liquid and we went home. To

be honest, the preparing for the scan took MUCh longer than the

actual scan. (the Dr exam, prepping her, gaving her the medicine,

etc.)

Good luck and keep us updated.

Jen

(18 mo), Hanger Band Grad

(4 years)

>

> Hello Everyone,

>

> My name is and my five month old daughter Sydney has what

> seems to be an ever-flattening head in the back, despite my efforts

> to prevent it. I saw my ped about it this week and she said it was

> fine and would likely round back out when she started sitting up

> (without even touching or carefully examining her head)! It is

> definitely flat in the back and there seem to be some flat spots on

> either side (though they are symmetrical). At my request, the ped

> has referred us to a pediatric plastic surgeon at Vanderbilt in

> Nashville, TN. This is terrific, however, the first step before

> even being seen is to have a 3D CT scan. I am very nervous about

> this, as they have to sedate her and am concerned about the

possible

> effects of radiation. Did anyone else have these concerns? I wish

> that we could see the specialist for him to examine her first

before

> resorting to a CT scan, but apparently this is not how they work.

> It seems odd that we couldn't just consult with them and then go

> have the scan. I just hate the thought that this is really

> something that seems optional and is being done at my urging and

> that something could happen as a result of the sedation. I'm

really

> stressing!

>

> Any feedback would be greatly appreciated!

>

> Best,

>

>

[Guest guest]

Hi there Jen, Thanks for the feedback. I'm glad that you had a positive experience with the CT scan and thank you for sharing. I live in a rural area outside of Nashville, TN and our daughter would be having the scan at Vanderbilt Children's Hospital, which is one of the best in the nation. This is obviously a very good thing! The thing that has me so stressed is that they intubate her (sp?), in other words they give her an IV and put a tube down her throat. She has an anethesiologist and is totally out, not just sedated. I guess the whole idea of that just really freaks me out. It seems like a lot to put her through for a five minute scan, but I've been told that they do that in the event that there are any problems, then they already have a breathing tube in place. Still, just the idea of it has me extremely nervous. I'm wondering if there is any way to have her evaluated and avoid this

step... Best, Sydney (5 months, no official diagnosis or treatment yet)Jen <ronandjenvelez@...> wrote: Hello . I just wanted to let you know that my Daughter, , had a 2D AND 3D Ct scan when she was 6 months old. Many doctor's like to do one to rule out craniosynostosis before they will prescribe a band. It was really not a big deal... was sedated with an oral sedative. She drank it was asleep in about 5 minutes. The CT scan then took about 5-10 minutes and then she slowly woke up and had to drink some apple juice/clear liquid and we went home. To be honest, the preparing for the scan took MUCh longer than the actual scan. (the Dr exam, prepping her, gaving her the

medicine, etc.)Good luck and keep us updated.Jen (18 mo), Hanger Band Grad (4 years)>> Hello Everyone,> > My name is and my five month old daughter Sydney has what > seems to be an ever-flattening head in the back, despite my efforts > to prevent it. I saw my ped about it this week and she said it was > fine and would likely round back out when she started sitting up > (without even touching or carefully examining her head)! It is > definitely flat in the back and there seem to be some flat spots on > either side (though they are symmetrical). At my request, the ped > has referred us to a pediatric plastic surgeon at Vanderbilt in > Nashville, TN. This is terrific, however, the first step before > even being seen is

to have a 3D CT scan. I am very nervous about > this, as they have to sedate her and am concerned about the possible > effects of radiation. Did anyone else have these concerns? I wish > that we could see the specialist for him to examine her first before > resorting to a CT scan, but apparently this is not how they work. > It seems odd that we couldn't just consult with them and then go > have the scan. I just hate the thought that this is really > something that seems optional and is being done at my urging and > that something could happen as a result of the sedation. I'm really > stressing! > > Any feedback would be greatly appreciated!> > Best,> >

- Helps protect you from nasty viruses.

[Guest guest]

Hi there Jen, Thanks for the feedback. I'm glad that you had a positive experience with the CT scan and thank you for sharing. I live in a rural area outside of Nashville, TN and our daughter would be having the scan at Vanderbilt Children's Hospital, which is one of the best in the nation. This is obviously a very good thing! The thing that has me so stressed is that they intubate her (sp?), in other words they give her an IV and put a tube down her throat. She has an anethesiologist and is totally out, not just sedated. I guess the whole idea of that just really freaks me out. It seems like a lot to put her through for a five minute scan, but I've been told that they do that in the event that there are any problems, then they already have a breathing tube in place. Still, just the idea of it has me extremely nervous. I'm wondering if there is any way to have her evaluated and avoid this

step... Best, Sydney (5 months, no official diagnosis or treatment yet)Jen <ronandjenvelez@...> wrote: Hello . I just wanted to let you know that my Daughter, , had a 2D AND 3D Ct scan when she was 6 months old. Many doctor's like to do one to rule out craniosynostosis before they will prescribe a band. It was really not a big deal... was sedated with an oral sedative. She drank it was asleep in about 5 minutes. The CT scan then took about 5-10 minutes and then she slowly woke up and had to drink some apple juice/clear liquid and we went home. To be honest, the preparing for the scan took MUCh longer than the actual scan. (the Dr exam, prepping her, gaving her the

medicine, etc.)Good luck and keep us updated.Jen (18 mo), Hanger Band Grad (4 years)>> Hello Everyone,> > My name is and my five month old daughter Sydney has what > seems to be an ever-flattening head in the back, despite my efforts > to prevent it. I saw my ped about it this week and she said it was > fine and would likely round back out when she started sitting up > (without even touching or carefully examining her head)! It is > definitely flat in the back and there seem to be some flat spots on > either side (though they are symmetrical). At my request, the ped > has referred us to a pediatric plastic surgeon at Vanderbilt in > Nashville, TN. This is terrific, however, the first step before > even being seen is

to have a 3D CT scan. I am very nervous about > this, as they have to sedate her and am concerned about the possible > effects of radiation. Did anyone else have these concerns? I wish > that we could see the specialist for him to examine her first before > resorting to a CT scan, but apparently this is not how they work. > It seems odd that we couldn't just consult with them and then go > have the scan. I just hate the thought that this is really > something that seems optional and is being done at my urging and > that something could happen as a result of the sedation. I'm really > stressing! > > Any feedback would be greatly appreciated!> > Best,> >

- Helps protect you from nasty viruses.

[Guest guest]

Hi Stacey, Thanks so much for your response. I agree from the postings that everyone's experience is a bit different. I do feel that a specialist should be willing to at least consult with us before having us undergo a CT scan when it may not in fact merit it. I don't honestly think Sydney's case is cranio, but rather, flattening due to positioning. I will definitely visit the CAPPS Website though. Where are you located? I've only been able to find specialists in the Nashville area who deal with this at Vanderbilt. The plastic surgeon will definitely not even consult with us without a CT scan first. For this reason, I'm urgining that we get an appointment with the neurosurgeon, as he will at least talk to us first. I'm hoping we can get in this week or next, as time is ticking... Best, Sydney (5 months, no official diagnosis yet, but flattening head)oscaredwink <oscaredwink@...> wrote: :It seems from your responses so far that every office has a different protocol. I will tell you that where I live the ped. neuro surgeons see the babies first and then only order the x-ray or CT if they have a concern. Basically, the explanation we got is that they look at so many heads that in many cases they can rule out fusion without the need for scans (and sedation). If they have any doubt at all, they order it after the first visit. Have you been to the CAPPS website? They have a lot of information on craniosynostosis and some links on how to distinguish it from positional deformation. The "look" of cranio is very distinctive,

especially to an experienced doctor. I know it is hard and that some of these doctors are little intimidating, but I really think you could call and just refuse the scan until your baby is seen. I was also told that in experienced radiologist groups they can sometimes get the scan without sedation and even if the sedation is necessary, it is generally not a big deal at all.I hope that helps--we were on pins and needles for awhile waiting for the doctor to rule out cranio.Stacey >> Hello Everyone,> > My name is and my five month old daughter Sydney has what > seems to be an ever-flattening head in the back, despite my efforts > to prevent it. I saw my ped about it this week and she said it was > fine and would likely round back out when she

started sitting up > (without even touching or carefully examining her head)! It is > definitely flat in the back and there seem to be some flat spots on > either side (though they are symmetrical). At my request, the ped > has referred us to a pediatric plastic surgeon at Vanderbilt in > Nashville, TN. This is terrific, however, the first step before > even being seen is to have a 3D CT scan. I am very nervous about > this, as they have to sedate her and am concerned about the possible > effects of radiation. Did anyone else have these concerns? I wish > that we could see the specialist for him to examine her first before > resorting to a CT scan, but apparently this is not how they work. > It seems odd that we couldn't just consult with them and then go > have the scan. I just hate the thought that this is really > something

that seems optional and is being done at my urging and > that something could happen as a result of the sedation. I'm really > stressing! > > Any feedback would be greatly appreciated!> > Best,> >

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

Hi Stacey, Thanks so much for your response. I agree from the postings that everyone's experience is a bit different. I do feel that a specialist should be willing to at least consult with us before having us undergo a CT scan when it may not in fact merit it. I don't honestly think Sydney's case is cranio, but rather, flattening due to positioning. I will definitely visit the CAPPS Website though. Where are you located? I've only been able to find specialists in the Nashville area who deal with this at Vanderbilt. The plastic surgeon will definitely not even consult with us without a CT scan first. For this reason, I'm urgining that we get an appointment with the neurosurgeon, as he will at least talk to us first. I'm hoping we can get in this week or next, as time is ticking... Best, Sydney (5 months, no official diagnosis yet, but flattening head)oscaredwink <oscaredwink@...> wrote: :It seems from your responses so far that every office has a different protocol. I will tell you that where I live the ped. neuro surgeons see the babies first and then only order the x-ray or CT if they have a concern. Basically, the explanation we got is that they look at so many heads that in many cases they can rule out fusion without the need for scans (and sedation). If they have any doubt at all, they order it after the first visit. Have you been to the CAPPS website? They have a lot of information on craniosynostosis and some links on how to distinguish it from positional deformation. The "look" of cranio is very distinctive,

especially to an experienced doctor. I know it is hard and that some of these doctors are little intimidating, but I really think you could call and just refuse the scan until your baby is seen. I was also told that in experienced radiologist groups they can sometimes get the scan without sedation and even if the sedation is necessary, it is generally not a big deal at all.I hope that helps--we were on pins and needles for awhile waiting for the doctor to rule out cranio.Stacey >> Hello Everyone,> > My name is and my five month old daughter Sydney has what > seems to be an ever-flattening head in the back, despite my efforts > to prevent it. I saw my ped about it this week and she said it was > fine and would likely round back out when she

started sitting up > (without even touching or carefully examining her head)! It is > definitely flat in the back and there seem to be some flat spots on > either side (though they are symmetrical). At my request, the ped > has referred us to a pediatric plastic surgeon at Vanderbilt in > Nashville, TN. This is terrific, however, the first step before > even being seen is to have a 3D CT scan. I am very nervous about > this, as they have to sedate her and am concerned about the possible > effects of radiation. Did anyone else have these concerns? I wish > that we could see the specialist for him to examine her first before > resorting to a CT scan, but apparently this is not how they work. > It seems odd that we couldn't just consult with them and then go > have the scan. I just hate the thought that this is really > something

that seems optional and is being done at my urging and > that something could happen as a result of the sedation. I'm really > stressing! > > Any feedback would be greatly appreciated!> > Best,> >

Relax. virus scanning helps detect nasty viruses!