New here - Ricky's story so far

[Guest guest]

Hello,

I am new here and after reading Tamara's intro I decided to write an

intro.

Tamara, your email is like reading about my story.... I really feel

for you as I am going through all that myself right now with Ricky

who is 6.5 months, will be 7 months a week from Monday.

Anyway.......

I'm , from Montreal, Quebec, Canada, and mom to three kids, 9 yr

old Danny, almost 3 yr old Olivia, and Ricky who is my special baby

boy who is almost 7 months old and who has a bunch of issues rigth

now ranging from severe developmental delays, tortocollis,

plagiocephaly, and neurosensory hearing loss. His CT scan is on the

16 of December as well seeing a ENT for his hearing that day too and

I finally start the PT with him on Wednesday. I have already seen a

eye specialist, who says his eye sight is terrific (YAY!), confirmed

he has facial assemetry (dont know the distance) that makes his eye

look bigger than the other (cant recall whether its the left or right

at the moment...I am embarrest to say I am horrible at my left and

rights, LOL). Then saw a neurosurgeon who with an xray ruled out

craniosyntosis but on examining him confirmed he has plagio. When

asked about the band thing he says " we will use agressive therapy

first and see as the bands are over $1200 dollers! " and I am like

WHAT?!?! I see him again in March. I saw a pediatric neurologist

last Monday. She is the one who confirmed his global delays -- he is

at a 3-4 month old in development, as he is not rolling over from

either side, not putting his toys in his hands or putting them from

one side to the other, cannot put weight on his legs, cannot sit up

yet, nor even sit with assistance too well.... the list goes on.

When she put a instrament at his ear (that had a loud peircing sound

in it) he did not even blink... confirming that he likely has

neurosensory loss (we had a audiology test done with bad results, an

abnormal OAE so after seeing the ENT more testing will be done and

likely hearing aids necessary).

Anwyay..........so I am here for the plagio part Anyone here

from Canada that can give me some tips????

Will he need surgery?

I try to keep him switching sides and so far to no avail, he

inevitably goes right back to the bad side. I need some suggestions

as to how I can help him, any suggestions?

I am reading through your posts now and going through all the links

and stuff, so I am sure I will find some answers. I just read

Tamara's intro and was amazed how much it resembles what I am going

threw.... I am so glad to find this list.

Thank you,

mom to Ricky, almost 7 months

from Montreal, Canada

[Guest guest]

Hi ,

First of all, welcome to the group. You will find this to be a

valuable source of information as well as encouragement. I am still

pretty new to all of this myself, my son was banded on 11/26, but

there are many veteran moms here who have excellent know-how and

advice. More so than many bone-headed pediatricians, including

mine, who tend to be against banding. I got a second opinion after

reading some of the stories on this board and sure enough,

was a good candidate for banding.

Maybe this is what you should do. Waiting till March seems awfully

long, and if Ricky does need a band, you lost 3 months right there.

You could also post some pictures and the " experts " here could take

a look at it.

Anyhow, welcome and good luck with whatever you decide to do.

Anya

- 5 months, R Plagio, STARband 11/26

--- In Plagiocephaly , " " <poohbear1252@y...>

wrote:

>

> Hello,

>

> I am new here and after reading Tamara's intro I decided to write

an

> intro.

>

> Tamara, your email is like reading about my story.... I really

feel

> for you as I am going through all that myself right now with Ricky

> who is 6.5 months, will be 7 months a week from Monday.

>

> Anyway.......

>

> I'm , from Montreal, Quebec, Canada, and mom to three kids, 9

yr

> old Danny, almost 3 yr old Olivia, and Ricky who is my special

baby

> boy who is almost 7 months old and who has a bunch of issues rigth

> now ranging from severe developmental delays, tortocollis,

> plagiocephaly, and neurosensory hearing loss. His CT scan is on

the

> 16 of December as well seeing a ENT for his hearing that day too

and

> I finally start the PT with him on Wednesday. I have already seen

a

> eye specialist, who says his eye sight is terrific (YAY!),

confirmed

> he has facial assemetry (dont know the distance) that makes his

eye

> look bigger than the other (cant recall whether its the left or

right

> at the moment...I am embarrest to say I am horrible at my left and

> rights, LOL). Then saw a neurosurgeon who with an xray ruled out

> craniosyntosis but on examining him confirmed he has plagio.

When

> asked about the band thing he says " we will use agressive therapy

> first and see as the bands are over $1200 dollers! " and I am like

> WHAT?!?! I see him again in March. I saw a pediatric

neurologist

> last Monday. She is the one who confirmed his global delays -- he

is

> at a 3-4 month old in development, as he is not rolling over from

> either side, not putting his toys in his hands or putting them

from

> one side to the other, cannot put weight on his legs, cannot sit

up

> yet, nor even sit with assistance too well.... the list goes on.

> When she put a instrament at his ear (that had a loud peircing

sound

> in it) he did not even blink... confirming that he likely has

> neurosensory loss (we had a audiology test done with bad results,

an

> abnormal OAE so after seeing the ENT more testing will be done and

> likely hearing aids necessary).

>

> Anwyay..........so I am here for the plagio part Anyone here

> from Canada that can give me some tips????

>

> Will he need surgery?

>

> I try to keep him switching sides and so far to no avail, he

> inevitably goes right back to the bad side. I need some

suggestions

> as to how I can help him, any suggestions?

>

> I am reading through your posts now and going through all the

links

> and stuff, so I am sure I will find some answers. I just read

> Tamara's intro and was amazed how much it resembles what I am

going

> threw.... I am so glad to find this list.

>

> Thank you,

>

> mom to Ricky, almost 7 months

> from Montreal, Canada

[Guest guest]

, I've sent you an e-mail to your poohbear address.

--- In Plagiocephaly , " " <poohbear1252@y...>

wrote:

>

> Hello,

>

> I am new here and after reading Tamara's intro I decided to write

an

> intro.

>

> Tamara, your email is like reading about my story.... I really

feel

> for you as I am going through all that myself right now with Ricky

> who is 6.5 months, will be 7 months a week from Monday.

>

> Anyway.......

>

> I'm , from Montreal, Quebec, Canada, and mom to three kids, 9

yr

> old Danny, almost 3 yr old Olivia, and Ricky who is my special

baby

> boy who is almost 7 months old and who has a bunch of issues rigth

> now ranging from severe developmental delays, tortocollis,

> plagiocephaly, and neurosensory hearing loss. His CT scan is on

the

> 16 of December as well seeing a ENT for his hearing that day too

and

> I finally start the PT with him on Wednesday. I have already seen

a

> eye specialist, who says his eye sight is terrific (YAY!),

confirmed

> he has facial assemetry (dont know the distance) that makes his

eye

> look bigger than the other (cant recall whether its the left or

right

> at the moment...I am embarrest to say I am horrible at my left and

> rights, LOL). Then saw a neurosurgeon who with an xray ruled out

> craniosyntosis but on examining him confirmed he has plagio.

When

> asked about the band thing he says " we will use agressive therapy

> first and see as the bands are over $1200 dollers! " and I am like

> WHAT?!?! I see him again in March. I saw a pediatric

neurologist

> last Monday. She is the one who confirmed his global delays -- he

is

> at a 3-4 month old in development, as he is not rolling over from

> either side, not putting his toys in his hands or putting them

from

> one side to the other, cannot put weight on his legs, cannot sit

up

> yet, nor even sit with assistance too well.... the list goes on.

> When she put a instrament at his ear (that had a loud peircing

sound

> in it) he did not even blink... confirming that he likely has

> neurosensory loss (we had a audiology test done with bad results,

an

> abnormal OAE so after seeing the ENT more testing will be done and

> likely hearing aids necessary).

>

> Anwyay..........so I am here for the plagio part Anyone here

> from Canada that can give me some tips????

>

> Will he need surgery?

>

> I try to keep him switching sides and so far to no avail, he

> inevitably goes right back to the bad side. I need some

suggestions

> as to how I can help him, any suggestions?

>

> I am reading through your posts now and going through all the

links

> and stuff, so I am sure I will find some answers. I just read

> Tamara's intro and was amazed how much it resembles what I am

going

> threw.... I am so glad to find this list.

>

> Thank you,

>

> mom to Ricky, almost 7 months

> from Montreal, Canada

[Guest guest]

Hello , and welcome to the group.

You do have quite a few options in Canada. If you go to the

database, and then helmet / band database you can look up all the

info on Canada. I looked, and there are 9places you can go to. I

hope that helps some. I'm not sure how the healthcare system is set

up, but I'm asuming you need an Rx from your pediatrician. Good

luck in getting this. As far as the delays go, did you have a hard

pregnancy? My daughter was delayed in most everything. Sha had

torticollis / plagio, and delays.

She didn't start rolling till she was 91/2months old, didn't crawl

till about 11 1/2 months, and she didn't walk till she was 16

1/2months old. Some kids are just on their own schedule which

doesn't mean that they won't do it. Now at 18months you would never

know that my daughter has only been walking for 6wks. She runs all

over the place, and your son will too. I'm sorry to hear about the

hearing though. My little one also failed a hearing test, and they

found out that all it was, was fluid build up. Once they took care

of that she actually passed it. I'm hopeing that this might be what

could cause your sons hearing. Did he fail on both sides, or only

one? I'm glad you found us, and I hope we can help you with

anything you need info on.

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad

--- In Plagiocephaly , " " <poohbear1252@y...>

wrote:

>

> Hello,

>

> I am new here and after reading Tamara's intro I decided to write

an

> intro.

>

> Tamara, your email is like reading about my story.... I really

feel

> for you as I am going through all that myself right now with Ricky

> who is 6.5 months, will be 7 months a week from Monday.

>

> Anyway.......

>

> I'm , from Montreal, Quebec, Canada, and mom to three kids, 9

yr

> old Danny, almost 3 yr old Olivia, and Ricky who is my special

baby

> boy who is almost 7 months old and who has a bunch of issues rigth

> now ranging from severe developmental delays, tortocollis,

> plagiocephaly, and neurosensory hearing loss. His CT scan is on

the

> 16 of December as well seeing a ENT for his hearing that day too

and

> I finally start the PT with him on Wednesday. I have already seen

a

> eye specialist, who says his eye sight is terrific (YAY!),

confirmed

> he has facial assemetry (dont know the distance) that makes his

eye

> look bigger than the other (cant recall whether its the left or

right

> at the moment...I am embarrest to say I am horrible at my left and

> rights, LOL). Then saw a neurosurgeon who with an xray ruled out

> craniosyntosis but on examining him confirmed he has plagio.

When

> asked about the band thing he says " we will use agressive therapy

> first and see as the bands are over $1200 dollers! " and I am like

> WHAT?!?! I see him again in March. I saw a pediatric

neurologist

> last Monday. She is the one who confirmed his global delays -- he

is

> at a 3-4 month old in development, as he is not rolling over from

> either side, not putting his toys in his hands or putting them

from

> one side to the other, cannot put weight on his legs, cannot sit

up

> yet, nor even sit with assistance too well.... the list goes on.

> When she put a instrament at his ear (that had a loud peircing

sound

> in it) he did not even blink... confirming that he likely has

> neurosensory loss (we had a audiology test done with bad results,

an

> abnormal OAE so after seeing the ENT more testing will be done and

> likely hearing aids necessary).

>

> Anwyay..........so I am here for the plagio part Anyone here

> from Canada that can give me some tips????

>

> Will he need surgery?

>

> I try to keep him switching sides and so far to no avail, he

> inevitably goes right back to the bad side. I need some

suggestions

> as to how I can help him, any suggestions?

>

> I am reading through your posts now and going through all the

links

> and stuff, so I am sure I will find some answers. I just read

> Tamara's intro and was amazed how much it resembles what I am

going

> threw.... I am so glad to find this list.

>

> Thank you,

>

> mom to Ricky, almost 7 months

> from Montreal, Canada

[Guest guest]

Hi ,

Welcome to the group! You sure are going through alot with Ricky.

We have had some Canadian members before, have you looked in our

helmet/band database? Sorry to hear about Ricky's hearing loss.

Hopefully it is mild and hearing aids will help. As far as the

plagio, how severe would you say he is? Considering he isn't

rolling yet and has torticollis, he's still spending lots of time

flat on his head probably, right? If I were you, I really wouldn't

wait until his followup in March to have his plagio evaluated again

if it's anything more than mild. If he does need a band, the

younger a baby is the faster and better correction they'll get. If

you wait until March, then get your referrals and such, it could be

another couple of months before you actually get him into a band

with all the possible delays from insurance and just getting the

band made. With him still not spending much time off his head, it

is unlikely that it will get much better on its own unless you're

really able to reposition him 24/7 with no time spent on his flat

spot (which is very difficult even without having torticollis!).

Good luck with everything and please keep us updated on Ricky.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com/hannahs_noggin/

--- In Plagiocephaly , " " <poohbear1252@y...>

wrote:

>

> Hello,

>

> I am new here and after reading Tamara's intro I decided to write

an

> intro.

>

> Tamara, your email is like reading about my story.... I really

feel

> for you as I am going through all that myself right now with Ricky

> who is 6.5 months, will be 7 months a week from Monday.

>

> Anyway.......

>

> I'm , from Montreal, Quebec, Canada, and mom to three kids, 9

yr

> old Danny, almost 3 yr old Olivia, and Ricky who is my special

baby

> boy who is almost 7 months old and who has a bunch of issues rigth

> now ranging from severe developmental delays, tortocollis,

> plagiocephaly, and neurosensory hearing loss. His CT scan is on

the

> 16 of December as well seeing a ENT for his hearing that day too

and

> I finally start the PT with him on Wednesday. I have already seen

a

> eye specialist, who says his eye sight is terrific (YAY!),

confirmed

> he has facial assemetry (dont know the distance) that makes his

eye

> look bigger than the other (cant recall whether its the left or

right

> at the moment...I am embarrest to say I am horrible at my left and

> rights, LOL). Then saw a neurosurgeon who with an xray ruled out

> craniosyntosis but on examining him confirmed he has plagio.

When

> asked about the band thing he says " we will use agressive therapy

> first and see as the bands are over $1200 dollers! " and I am like

> WHAT?!?! I see him again in March. I saw a pediatric

neurologist

> last Monday. She is the one who confirmed his global delays -- he

is

> at a 3-4 month old in development, as he is not rolling over from

> either side, not putting his toys in his hands or putting them

from

> one side to the other, cannot put weight on his legs, cannot sit

up

> yet, nor even sit with assistance too well.... the list goes on.

> When she put a instrament at his ear (that had a loud peircing

sound

> in it) he did not even blink... confirming that he likely has

> neurosensory loss (we had a audiology test done with bad results,

an

> abnormal OAE so after seeing the ENT more testing will be done and

> likely hearing aids necessary).

>

> Anwyay..........so I am here for the plagio part Anyone here

> from Canada that can give me some tips????

>

> Will he need surgery?

>

> I try to keep him switching sides and so far to no avail, he

> inevitably goes right back to the bad side. I need some

suggestions

> as to how I can help him, any suggestions?

>

> I am reading through your posts now and going through all the

links

> and stuff, so I am sure I will find some answers. I just read

> Tamara's intro and was amazed how much it resembles what I am

going

> threw.... I am so glad to find this list.

>

> Thank you,

>

> mom to Ricky, almost 7 months

> from Montreal, Canada