Re: New.....with some questions

[Guest guest]

Are you familiar with torticollis (tort). This is where the muscles

on one side of the neck are shorter so the baby preferes to look one

way, sleep on one side... This is a big contributor to plagio, and

from what you described you daugther may have tort. If she does it

is treated with Physical Therapy (PT) where you learn stretches to

be done at home about five times a day. You should probably have

your daughter evaluated by someone familiar with tort.

Other than the tort, I would say that you should go ahead and push

for a band. My daughter was diagnosed with brachy (flat in back) at

4 mo and in her band by 5 mo. If you aren't seeing progress with

repositioning (repo) then you should band. You will need a

prescription so you'll have to convince your ped, or see someone

else. Is there a cranial techonologies near you

(www.cranialtech.com)? they'll do a free evaluation, and provide

measurements to help convince your doctor to band (if needed). Other

band providers sometime provide evaluations as well.

In the meantime there are repo tips in the files section that you

can take a look at. It sounds like the bumbo etc should keep her off

her head a lot. Also you might want to use a rolled up blanket or

sock filled with rice (sewn to clothing) behind the shoulder to keep

her off her flat spot while sleeping, in the car seat, etc.

Also try not to stress too much. I know it is a lot to deal with,

but you have caught this at a very good age and can definitely do

quite a bit to correct it.

-christine

sydney 2yrs starband grad

>

> Ok, I have a 18 week old daughter, Alice. At 2 months, we were

told

> the right side of her head is slightly flat, make sure she sleeps

on

> the other side and does tummy time. We did that. Monday was her

4

> month check up, but the week prior, I had noticed some ridging

along

> her coronal suture. I brought this up in our check up appt.

>

> Monday was our check up, the ped. said it could be plagiocephally

or

> craniosynostosis. He sent us for x-rays on Tuesday. He called

back

> yesterdray and said that the x-ray showed no fusion of the

sutures,

> but also said that craniosynostosis doesn't always show up in x-

> rays. He told us to keep her off of the right side of her head

(the

> slightly flat side) and do lots of tummy time. He said we will

take

> a look at her head in 2 months and then see what is happening.

>

> When I got home from work yesterday, I noticed that she does

> absolutely nothing on the right side... she hardly ever lays down

on

> her back to play, if she does, she immediately flips over.

Mainly,

> if she isn't doing tummy time, she is in an excersaucer, bumbo or

> jumperoo type thing to save her from getting trampled by her 20

> month old brother. I even feed her with pressure on her left

side.

> I also have woken up for the past 2 nights since we heard the

> plagiocephally term 5 or 6 times a night to check what she is

> sleeping on. She is always on her left side (not just with her

head

> to the left, completely on her left side).

>

> I called the nurse today to get some further instructions on how

to

> fix her head if she doesn't really spend time on the side that is

> flat. She told me to let her do tummy time and keep her from

> sleeping/laying on that side of her head.

>

> Needless to say, I am about to pull my hair out. I want to fix my

> baby's head, but I am not getting any help. Her forehead and ears

> are already asymetrical and I can only see them getting worse if I

> don't know how to help reposition her.

>

> I need ideas! Maybe, I need to know whether or not to push this

> further with the ped. When I talked to the nurse today she gave

me

> the impression that they weren't ruling out craniosynostosis yet,

> they just thought it less likely because of the x-ray. I just

don't

> know how to fix my baby!

>

> I have heard with either plagio or cranio that the earlier you

catch

> and try to fix them, the better.... I just feel like I need to do

> something and the pediatrician's office just isn't helping me.

>

> Any ideas?

>

> Thanks in advance for your help.... any more info that you need,

let

> me know.

>

[Guest guest]

>Hi, I know exactly what you mean. My son is 13 months old, and

didn't receive the helmet until he was 9 months. During each of his

visits, I would always tell the ped., his head was not getting any

better, it was getting worse. I tried everything from moving him

from side to side in the crib, moving pictures around the room.

Nothing worked. He loved to be on his flat side. He finally had x-

rays, and was fitted for the helmet. He had worn it for 16 weeks,

and graduated. Unfortunately, he reverted two weeks after, it leads

me to wonder if his sutures were fused to begin with. I brought him

back to the doc who confirmed he did revert, and they are now going

to give him a CT Scan to see if his sutures are definately not

fused. I don't know why they don't do a CT Scan to begin with, it

shows it much more clearer. My advice to you is, keep on the ped. do

not stop until you are satisfied. You are the only one to advocate

for your child. Good luck!!! Please keep me informed.

> Ok, I have a 18 week old daughter, Alice. At 2 months, we were

told

> the right side of her head is slightly flat, make sure she sleeps

on

> the other side and does tummy time. We did that. Monday was her 4

> month check up, but the week prior, I had noticed some ridging

along

> her coronal suture. I brought this up in our check up appt.

>

> Monday was our check up, the ped. said it could be plagiocephally

or

> craniosynostosis. He sent us for x-rays on Tuesday. He called

back

> yesterdray and said that the x-ray showed no fusion of the sutures,

> but also said that craniosynostosis doesn't always show up in x-

> rays. He told us to keep her off of the right side of her head

(the

> slightly flat side) and do lots of tummy time. He said we will

take

> a look at her head in 2 months and then see what is happening.

>

> When I got home from work yesterday, I noticed that she does

> absolutely nothing on the right side... she hardly ever lays down

on

> her back to play, if she does, she immediately flips over. Mainly,

> if she isn't doing tummy time, she is in an excersaucer, bumbo or

> jumperoo type thing to save her from getting trampled by her 20

> month old brother. I even feed her with pressure on her left

side.

> I also have woken up for the past 2 nights since we heard the

> plagiocephally term 5 or 6 times a night to check what she is

> sleeping on. She is always on her left side (not just with her

head

> to the left, completely on her left side).

>

> I called the nurse today to get some further instructions on how to

> fix her head if she doesn't really spend time on the side that is

> flat. She told me to let her do tummy time and keep her from

> sleeping/laying on that side of her head.

>

> Needless to say, I am about to pull my hair out. I want to fix my

> baby's head, but I am not getting any help. Her forehead and ears

> are already asymetrical and I can only see them getting worse if I

> don't know how to help reposition her.

>

> I need ideas! Maybe, I need to know whether or not to push this

> further with the ped. When I talked to the nurse today she gave me

> the impression that they weren't ruling out craniosynostosis yet,

> they just thought it less likely because of the x-ray. I just

don't

> know how to fix my baby!

>

> I have heard with either plagio or cranio that the earlier you

catch

> and try to fix them, the better.... I just feel like I need to do

> something and the pediatrician's office just isn't helping me.

>

> Any ideas?

>

> Thanks in advance for your help.... any more info that you need,

let

> me know.

>

[Guest guest]

Welcome-

It sounds like you are already trying all of the best repo

techniques, especially since you are able to keep her up off her

head so completely in the exersaucer, etc. It also doesn't sound

like torticollis is the culprit, since she so easily lays on the

side opposite the flat spot (my son had tort and I couldn't get him

to look to his weak side to save my life). I have also heard that x-

rays aren't the most reliable in diagnosing cranio. My son had a CT

scan to rule it out. I'm not sure I would wait 2 more months to get

the ped's opinion on it again. It took us 2 months to get an

appointment with a neurosurgeon (we had the CT after 1 month, but

still had to wait another month to get the results from the surgeon,

it was very nervewracking), so if you wait, it could be 4 more

months before you get a real solid answer about the cranio. I can't

see how it could hurt for your ped to refer you now, and you'll

hopefully have an answer by the time she turns 6 or 7 months, which

is still a great time to band if cranio is not the problem.

Good luck and please keep us posted.

Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)

Jordan-4

>

> Ok, I have a 18 week old daughter, Alice. At 2 months, we were

told

> the right side of her head is slightly flat, make sure she sleeps

on

> the other side and does tummy time. We did that. Monday was her

4

> month check up, but the week prior, I had noticed some ridging

along

> her coronal suture. I brought this up in our check up appt.

>

> Monday was our check up, the ped. said it could be plagiocephally

or

> craniosynostosis. He sent us for x-rays on Tuesday. He called

back

> yesterdray and said that the x-ray showed no fusion of the

sutures,

> but also said that craniosynostosis doesn't always show up in x-

> rays. He told us to keep her off of the right side of her head

(the

> slightly flat side) and do lots of tummy time. He said we will

take

> a look at her head in 2 months and then see what is happening.

>

> When I got home from work yesterday, I noticed that she does

> absolutely nothing on the right side... she hardly ever lays down

on

> her back to play, if she does, she immediately flips over.

Mainly,

> if she isn't doing tummy time, she is in an excersaucer, bumbo or

> jumperoo type thing to save her from getting trampled by her 20

> month old brother. I even feed her with pressure on her left

side.

> I also have woken up for the past 2 nights since we heard the

> plagiocephally term 5 or 6 times a night to check what she is

> sleeping on. She is always on her left side (not just with her

head

> to the left, completely on her left side).

>

> I called the nurse today to get some further instructions on how

to

> fix her head if she doesn't really spend time on the side that is

> flat. She told me to let her do tummy time and keep her from

> sleeping/laying on that side of her head.

>

> Needless to say, I am about to pull my hair out. I want to fix my

> baby's head, but I am not getting any help. Her forehead and ears

> are already asymetrical and I can only see them getting worse if I

> don't know how to help reposition her.

>

> I need ideas! Maybe, I need to know whether or not to push this

> further with the ped. When I talked to the nurse today she gave

me

> the impression that they weren't ruling out craniosynostosis yet,

> they just thought it less likely because of the x-ray. I just

don't

> know how to fix my baby!

>

> I have heard with either plagio or cranio that the earlier you

catch

> and try to fix them, the better.... I just feel like I need to do

> something and the pediatrician's office just isn't helping me.

>

> Any ideas?

>

> Thanks in advance for your help.... any more info that you need,

let

> me know.

>

[Guest guest]

Thank you for all of your responses!

I have round # 3 with the doctor today. He is supposed to call me

at some point this morning because I got absolutely nowhere with the

nurse yesterday. I just need more direction than " don't let her lay

on her flat side and do plenty of tummy time " ...... I went to the

website that someone gave a link to yesterday and they don't have a

center near me, but I printed off a copy of how to tell the severity

of your child's plagio. Well I took all the appropriate pictures

and drew lines through the appropriate places, and I just don't

think her head is that flat. Well, not enough to be causing the

ridges in the front. Looking back at my son, he had a worse flat

spot than his sister and his plates never formed a ridge.

One question though, I know in one way to tell the difference with

plagio and cranio is something to do with the ears. If she truly

has plagio and it is causing her ears to be asymetrical, should the

ear on the side of the flat spot be farther forward or backwards

from the other side? For example, her flat spot is on the right

side, what way does that ear get pushed in regards to symetry?

Forwards or backwards?

[Guest guest]

My son's plagio is on the back right side of his head, and his right

ear and right forehead are pushed forward. Is your daughter's the

opposite?

Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)

Jordan-4

>

> Thank you for all of your responses!

>

> I have round # 3 with the doctor today. He is supposed to call me

> at some point this morning because I got absolutely nowhere with

the

> nurse yesterday. I just need more direction than " don't let her

lay

> on her flat side and do plenty of tummy time " ...... I went to the

> website that someone gave a link to yesterday and they don't have

a

> center near me, but I printed off a copy of how to tell the

severity

> of your child's plagio. Well I took all the appropriate pictures

> and drew lines through the appropriate places, and I just don't

> think her head is that flat. Well, not enough to be causing the

> ridges in the front. Looking back at my son, he had a worse flat

> spot than his sister and his plates never formed a ridge.

>

> One question though, I know in one way to tell the difference with

> plagio and cranio is something to do with the ears. If she truly

> has plagio and it is causing her ears to be asymetrical, should

the

> ear on the side of the flat spot be farther forward or backwards

> from the other side? For example, her flat spot is on the right

> side, what way does that ear get pushed in regards to symetry?

> Forwards or backwards?

>

[Guest guest]

Her plagio (if that's truly what is causing it) is on the right

side..... her right ear is slightly further back than her left...

which I guess is opposite of what it should be doing... her ridge is

on her left and her forehead is slightly bulging on her right side,

her eye is higher on her right side. Her cheek seems a little fuller

on her left side....

I really hate over analyzing my daughter, but I guess it has to be

done.

[Guest guest]

I'm sorry if this has already been discussed... I can;t remember everyone's back stories. :-P

Have you seen a craniofacial dr/team??? That can be a good next step... especially if the ped is not helping and you are see such a wide varitey of asymmetries.

HTH!

Jen and Luli - 29 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Re: New.....with some questions

Her plagio (if that's truly what is causing it) is on the right

side..... her right ear is slightly further back than her left...

which I guess is opposite of what it should be doing... her ridge is

on her left and her forehead is slightly bulging on her right side,

her eye is higher on her right side. Her cheek seems a little fuller

on her left side....

I really hate over analyzing my daughter, but I guess it has to be

done.

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