Re: Gathering Information/Australia

[Guest guest]

Hi ,

I'm from Melbourne, Australia and relatively new to this group

myself. My son is 15 months old and has plagiocephaly (on the right

side) and the slightest bit of facial asymmetry that only I seem to

notice (my husband is either oblivious to it or pretends not to see

it just to make me feel less guilty). I still look at the shape of

his head every day and wish that I had found this group earlier or

had at least been given some better advice by our Maternal and Child

Health nurse at our " well-baby checkups " when my son was younger. I

did do something about it once I realized that correction time was

running out for him as he was nearing 12 months, but I got pretty

much the " it will round out by itself as he grows older " song and

dance by the doctors, nurses and pediatricians. I even tried a

Chiropractor, who was slightly more honest about the extent of my

son's deformity (mild to moderate he said), but even he discouraged

getting a helmet because he said that my son's case was not extreme

enough to warrant helmet therapy and added that the craniofacial

unit at the Royal Children's would probably not give him one

anyways. I don't even want to go through how long it took to

convince our GP to give us a referral for the pediatrician once I

had explained why I wanted to take my son to one. " |To have the

shape of his head assessed " was apparently a new concept to our GP!

To cut a long story short, I don't know where to go from here and

therefore all I can do now pretty much is hope and pray every day

that this will somehow not affect him in the course of leading a

normal life (because kids can be cruel to kids who are different in

any way).

The SIDS " sleep them on their backs " scare is what led to my son's

condition in the first place, but what I didn't know at that time

was that breastfed babies are at a lower risk of SIDS anyways, so in

my opinion if you're feeding her yourself, " repo during the night "

is not going to hurt her as much as they would like you to believe.

Hope my story helps you to take your daughter's treatment further

enough to lay your fears to rest. I wish you lots of luck with your

repositioning techniques.

Rabia Khan,

Mum to Humzah,

Melbourne, Australia.

--- In Plagiocephaly , " Kim & Daz " <dazzkim@t...>

wrote:

> Hi ,

>

> I had discussed with my doctor the stretching exercise that we

were doing (the hold diagonally across our body), that we had moved

her cot and change table to encourage her to look to the left, we

prop her in her cot with a towel rolled on the right side to make

her tilt to the other side, that we play with toys on her left. He

does suggest though, that within the year, with her sitting up and

moving around a lot more - that it will correct itself! But has

given me details to make an appointment with a paediatrician to get

another opinion.

>

> The appointment with the physio went okay. She was very happy with

the improvement with Alyssa's neck. Where she was not turning at all

to the left, she is now turning, following toys etc.

>

> The Physio did discuss with me again the option of seeing the

Craniofacial Unit - to get there opinion if I was worried. She was

not able to give me a referral (had to go back to my doctor for this

as the appointment with the Paediatrician is late Feb and this would

be too late and I would miss the next group booking and would have

to wait another month to see the Craniofacial Unit) Waiting to her

from them with a appointment time - I have also another appointment

to see the Physio again in another month for more follow up.

>

> We are having great luck with repositioning during the day - with

alot of tummy time. She loves watching the TV - so I hold her in my

arms to make Alyssa turn to the left to watch! I have what the

Physio called a peanut pillow - which I use when I have to put her

down to do things. This keeps her head when it should be - in

between her shoulders - instead of turning to the right. It also

goes everywhere with the pram if I go out and about.

>

> The most trouble I have is when she sleeps. I have a towel rolled

up under her right side to tilt her to the left - she starts off

turning her head to the left - but eventually moves it over to the

right. The other day I brought her a mirror to go on the left side

of her cot - which she loves. It has some activity toys for her to

play with stuck on it - and she just can't stop talking to herself -

now I find that she is not taking her naps and I have to remove it

for her to go to sleep (after some play time). Both my physio and

Doctor have advised me not to " aggressively reposition " her whilst

she is sleeping due to SIDS so I am now very nervous to be so

aggressive. If there are any other suggestions, I would appreciate

it.

>

> I will try to be organised and post some pictures (under Alyssa

M), and let you know when they are done

>

> (mother of Alyssa)

> Brisbane, Australia