Re: Gathering Information/Australia-Rabia

[Guest guest]

Hi Rabia

I'm sorry to hear about your story, as it must be so frustrating

knowing what is wrong, but unable really to do anything about it.

Can I just check that the helmet is not an option for you anymore. I

do know some specialists don't like to treat over a certain age, and

I also know of mums who have started at your son's age but not seen

the correction they hoped for. On the other hand, there are some

parents on this site, particularly in th US where they will band

later who have seen correction in older children. Have you contacted

the hospital where they make the helmets or is it unlikely they will

recommend one given the age and mild/moderate plagio?

Thanks so much for passing your story on- I'm sure you can relate to

the feelings people have when they find out about this. I'm also

sure you know the system in Australia now and can pass on useful

tips on how to deal with this- how frustrating that it takes so long

to get a referral when time is of the essence with treatment. It is

the same in the UK- there really is a lack of education amongst

primary care physicians.

Good luck

Hannah (mum to Lucia, London, UK)

Cranio grad

-

-- In Plagiocephaly , " rabia_misbah_khan "

<rabia_misbah_khan@y...> wrote:

>

> 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.

>

>

>

> > 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