5-month-old - severe plagiocephaly

[Guest guest]

Hi all,

My son is exactly 5 months old. He's got a severe case of positional

plagiocephaly. The back (right) side of his skull is flat and it's starting to

throw his ears out of alignment, and his right cheek protrudes a bit.

We saw a neurosurgeon last week who was adamant that he'd need surgery ASAP.

She said a helmet would not work because his head is only 5th percentile and

because of the severity of the skull deformity. She also ordered a CT scan to

rule out craniosynostosis.

He had the scan today, and the neurosurgeon is away, but got the results

immediately. She relayed a message to her receptionist which said, " Everything

looks fine, get fitted for a helmet as soon as possible. " The receptionist then

attempted to cancel my son's follow up (for next week). I'll know more when I

talk to the neurosurgeon's assistant tomorrow, but it's not craniosynostosis,

it's a very severe case of plagiocephaly. (She's actually got " severe skull

deformity " all over the initial paperwork.)

Basically, I'm really confused because she was insistent last week that ONLY

surgery would achieve the best results, and that helmet therapy wouldn't work

for him. She also said last week that a helmet would further restrict his head

growth.

I guess my question is, has anyone's baby had a severe case that was fixed with

the helmet and physical therapy? Like, bad enough where surgery was a

possibility, but the helmet and therapy FIXED it?

Also, are good results unlikely because of his age? The pediatrician didn't

catch this until two weeks ago; up until then, they just kept telling me to give

him more tummy time. I'm so scared that the window of opportunity for good

helmet results is gone, and that he'll have to undergo the surgery later.

Any info is appreciated. Thank you all so much.

--

[Guest guest]

My daughter was 15 months old and her head was below the 1st percentile when she got her helmet and it worked for her. Yes, the amount of growth is less with small heads - that is true, but the baseline of the head is also smaller so it should take less growth for correction. Certainly, at 5 months, being at the 5th percentile will not prevent the helmet from working.

I'd take advantage of the fact that the doctor forgot his earlier statement and go for the helmet. I would not want to do surgery for something that could be fixed with a helmet. Because of the small head and the severity, you may end up in the helmet for a bit longer than a milder case with a large head, but I still would think that this is a better option than surgery would be.

, mom to , 29 months

STARband grad May 2009

Chiro and CST

land

5-month-old - severe plagiocephaly

Hi all,My son is exactly 5 months old. He's got a severe case of positional plagiocephaly. The back (right) side of his skull is flat and it's starting to throw his ears out of alignment, and his right cheek protrudes a bit.We saw a neurosurgeon last week who was adamant that he'd need surgery ASAP. She said a helmet would not work because his head is only 5th percentile and because of the severity of the skull deformity. She also ordered a CT scan to rule out craniosynostosis.He had the scan today, and the neurosurgeon is away, but got the results immediately. She relayed a message to her receptionist which said, "Everything looks fine, get fitted for a helmet as soon as possible." The receptionist then attempted to cancel my son's follow up (for next week). I'll know more when I talk to the neurosurgeon's assistant tomorrow, but it's not craniosynostosis, it's a very severe case of plagiocephaly. (She's actually got "severe skull deformity" all over the initial paperwork.)Basically, I'm really confused because she was insistent last week that ONLY surgery would achieve the best results, and that helmet therapy wouldn't work for him. She also said last week that a helmet would further restrict his head growth.I guess my question is, has anyone's baby had a severe case that was fixed with the helmet and physical therapy? Like, bad enough where surgery was a possibility, but the helmet and therapy FIXED it? Also, are good results unlikely because of his age? The pediatrician didn't catch this until two weeks ago; up until then, they just kept telling me to give him more tummy time. I'm so scared that the window of opportunity for good helmet results is gone, and that he'll have to undergo the surgery later.Any info is appreciated. Thank you all so much.--

[Guest guest]

Hello ,

My son too has a small head, I think 5th percentile as well, and was diagnosed

with severe plagiocephaly (16mm). He only had to wear the helmet for 3.5 months,

and even then he didn't wear it the whole time due to a knot that formed on his

forehead, but that too cleared! His head is still slightly flat in the back but

no where near as flat as it once was. But we went to Cranial Tech first hoping

for the best, I didn't want him to be doomed to surgery, plus I couldn't afford

it, let alone the helmet, but it was the only option and he turned out great!

His ears were misaligned and his right eye was very narrow since the plagio was

on his left side and he favored it so much due to the torticollis on his right.

We didn't even go to a PT, the clinician at CT showed me some exercies to do on

my own and I researched more on the internet. And the helmet doesn't restrict

growth of the head, it passively puts pressure on the areas that need to be

redirected to grow properly into the right shape. I'd take him into CT for a

free evaluation, that way you know all the lingo to use on the surgeon to state

your opinion!

My son was 7 months old when he received his helmet and I've even seen 2 year

olds wearing them, so age shouldn't be an issue; it's true that their skulls

fuse by 18 months so it's better to get them in before that age marker to get

best results. (I sound like I work for CT!)Pediatricians don't know much about

plagio and all say the same thing - tummy time, but they don't know wehn to

refer a patient, you have to be adament about getting the prescription from them

to get the helmet. I had to push to get my son's, otherwise the pediatrician

would have let it go! We need to educate everybody out there about this so that

hopefully one day it will be something all dr.'s have to look for in each child

to prevent it in the future.

Hope that helps and makes you feel better, it's a long hard road, but it gets

easier when you realize it's all for the good of your child. Take care, and good

luck!

Alaina - Momma to Zayden, DOC Band grad. 6/9/09!!

(His pictures are in the Z files if you'd like to see.)

>

>

>

> My daughter was 15 months old and her head was below the 1st percentile when

she got her helmet and it worked for her. Yes, the amount of growth is less with

small heads - that is true, but the baseline of the head is also smaller so it

should take less growth for correction. Certainly, at 5 months, being at the 5th

percentile will not prevent the helmet from working.

>

>

>

> I'd take advantage of the fact that the doctor forgot his earlier statement

and go for the helmet. I would not want to do surgery for something that could

be fixed with a helmet. Because of the small head and the severity, you may end

up in the helmet for a bit longer than a milder case with a large head, but I

still would think that this is a better option than surgery would be.

>

>

>

> , mom to , 29 months

>

> STARband grad May 2009

>

> Chiro and CST

>

> land

>

>

>

>

>

> Ticker id: IvP3   Ticker id: yZZP     Ticker id: lFno

>

>

>

> 5-month-old - severe plagiocephaly

>

>  

>

>

>

>

> Hi all,

>

> My son is exactly 5 months old. He's got a severe case of positional

plagiocephaly. The back (right) side of his skull is flat and it's starting to

throw his ears out of alignment, and his right cheek protrudes a bit.

>

> We saw a neurosurgeon last week who was adamant that he'd need surgery ASAP.

She said a helmet would not work because his head is only 5th percentile and

because of the severity of the skull deformity. She also ordered a CT scan to

rule out craniosynostosis.

>

> He had the scan today, and the neurosurgeon is away, but got the results

immediately. She relayed a message to her receptionist which said, " Everything

looks fine, get fitted for a helmet as soon as possible. " The receptionist then

attempted to cancel my son's follow up (for next week). I'll know more when I

talk to the neurosurgeon's assistant tomorrow, but it's not craniosynostosis,

it's a very severe case of plagiocephaly. (She's actually got " severe skull

deformity " all over the initial paperwork.)

>

> Basically, I'm really confused because she was insistent last week that ONLY

surgery would achieve the best results, and that helmet therapy wouldn't work

for him. She also said last week that a helmet would further restrict his head

growth.

>

> I guess my question is, has anyone's baby had a severe case that was fixed

with the helmet and physical therapy? Like, bad enough where surgery was a

possibility, but the helmet and therapy FIXED it?

>

> Also, are good results unlikely because of his age? The pediatrician didn't

catch this until two weeks ago; up until then, they just kept telling me to give

him more tummy time. I'm so scared that the window of opportunity for good

helmet results is gone, and that he'll have to undergo the surgery later.

>

> Any info is appreciated. Thank you all so much.

> --

>

[Guest guest]

My daughter's plagio was about 16mm as well and we went with a helmet. However,

they never mentioned surgery to us. We saw a cranio-facial plastic surgeon

rather than a neurosurgeon though. Our daughter has been in a Starband since

early October, starting when she was 6 months and 1 week old and we've seen

wonderful results. She is going to start weaning from her helmet in a few

weeks. I think you are right in the window of opportunity for a helmet, so I

wouldn't worry about that in the least. 6 months is statistically the best time

to do it, but as others have said, they've started later and had results too.

Since you are getting mixed messages, I would make sure you talk to the

neurosurgeon again to clarify.

> >

> >

> >

> > My daughter was 15 months old and her head was below the 1st percentile

when she got her helmet and it worked for her. Yes, the amount of growth is less

with small heads - that is true, but the baseline of the head is also smaller so

it should take less growth for correction. Certainly, at 5 months, being at the

5th percentile will not prevent the helmet from working.

> >

> >

> >

> > I'd take advantage of the fact that the doctor forgot his earlier statement

and go for the helmet. I would not want to do surgery for something that could

be fixed with a helmet. Because of the small head and the severity, you may end

up in the helmet for a bit longer than a milder case with a large head, but I

still would think that this is a better option than surgery would be.

> >

> >

> >

> > , mom to , 29 months

> >

> > STARband grad May 2009

> >

> > Chiro and CST

> >

> > land

> >

> >

> >

> >

> >

> > Ticker id: IvP3   Ticker id: yZZP     Ticker id: lFno

> >

> >

> >

> > 5-month-old - severe plagiocephaly

> >

> >  

> >

> >

> >

> >

> > Hi all,

> >

> > My son is exactly 5 months old. He's got a severe case of positional

plagiocephaly. The back (right) side of his skull is flat and it's starting to

throw his ears out of alignment, and his right cheek protrudes a bit.

> >

> > We saw a neurosurgeon last week who was adamant that he'd need surgery ASAP.

She said a helmet would not work because his head is only 5th percentile and

because of the severity of the skull deformity. She also ordered a CT scan to

rule out craniosynostosis.

> >

> > He had the scan today, and the neurosurgeon is away, but got the results

immediately. She relayed a message to her receptionist which said, " Everything

looks fine, get fitted for a helmet as soon as possible. " The receptionist then

attempted to cancel my son's follow up (for next week). I'll know more when I

talk to the neurosurgeon's assistant tomorrow, but it's not craniosynostosis,

it's a very severe case of plagiocephaly. (She's actually got " severe skull

deformity " all over the initial paperwork.)

> >

> > Basically, I'm really confused because she was insistent last week that ONLY

surgery would achieve the best results, and that helmet therapy wouldn't work

for him. She also said last week that a helmet would further restrict his head

growth.

> >

> > I guess my question is, has anyone's baby had a severe case that was fixed

with the helmet and physical therapy? Like, bad enough where surgery was a

possibility, but the helmet and therapy FIXED it?

> >

> > Also, are good results unlikely because of his age? The pediatrician didn't

catch this until two weeks ago; up until then, they just kept telling me to give

him more tummy time. I'm so scared that the window of opportunity for good

helmet results is gone, and that he'll have to undergo the surgery later.

> >

> > Any info is appreciated. Thank you all so much.

> > --

> >

>