Re: Re: what is happening in Aust?

[Guest guest]

I'm new to the website, and I'm trying to take in a lot. I want to start my

daughter with the Magnesium, but I haven't heard what flaxseed oil does? Can

you explain it to me? Thanks for the info.

Tracey, mom to Sydney wcf

Re: what is happening in Aust?

Fiona,

Hi this is Terri from Hobart. My daughter Ainslie is now 11, she was

diagnosed in Sydney via the guthries test. She is quite a well child

only being hospitalised for sinuses, although she is on quite a

regime of antibiotics + other meds. I also have her on

vitamin/mineral supplements along with flaxseed oil and accupuncture.

From what I have experienced -between Hobart and Sydney - and heard

from others on this list and friends form Hobart who regularly go to

Melbourne - every CF centre acts differently.

I have come to the conclusion that as a parent of a child with cf or

any other medical complaint the parent has to be proactive for their

child. Many cf centres wait till the child gets very unwell before

treating the causes. I am not that patient a person I do not like to

see my child in pain or in trouble with their health so I joined this

list and have learnt a wealth of information and try to put some of

it into practise.

The best advice I can give you is find yourself a good GP or Cf

centre that you feel LISTENS TO YOU and you suspicions about your

childs health. You are the BEST judge of your childs health. It is

amazing how quickly you learn what type of cough your child has.

I hope I have not depressed you. I am sure your little one is

beautiful and is the light of your life. Congradulations on your

pregnancy.

Terri

from Hobart mum to Ainslie 11 wcf and Connor 7 nocf

[Guest guest]

Hi Terri,

I am amazed at my own strength when it comes to Jack. I have already had a

few incidents with the clinic and I am certainly not scared to speak up. But

you know before this happened to me I would of been too shy and I would have

thought the doctors new best. You know what really bugs me is that the

doctors and staff treat you like you're stupid because you're a mum who

stays home with their child. But you know I am a special education teacher

and I have a masters degree and I am not stupid and I expect them to explain

everything to me until I understand and I feel that I am just as smart as

them. I don't like being pushed around and things not communicated properly

to me. We've found a good GP and I liase between him and the clinic which is

local.

At first I didn't really want any contact with others I thought I've dealt

with lots of kids with disabilities I'll just look after Jack myself. I was

quite determined to give him as normal a life as possible. But I've soften

alot on that and I realise that I need to make educated decisions myself and

not just stick my head in the sand. At first I was on the general CF list

but I just found it too hard listening to the really sick people etc. and

the people who had passed on. I feel heaps better being in the parent group.

I still feel sad when I read posts about what others are going through and

thank god we haven't had to deal with too much so far but I feel at least

now I know the truth and I am more aware of CF issues for it.

I wish more things happened here in Australia maybe I'll have to do

something myself.

Great to hear from you

Fiona mo Jack 11 mths wcf

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: what is happening in Aust?

>Date: Fri, 12 Dec 2003 00:59:22 -0000

>

>Fiona,

>

>Hi this is Terri from Hobart. My daughter Ainslie is now 11, she was

>diagnosed in Sydney via the guthries test. She is quite a well child

>only being hospitalised for sinuses, although she is on quite a

>regime of antibiotics + other meds. I also have her on

>vitamin/mineral supplements along with flaxseed oil and accupuncture.

>

>From what I have experienced -between Hobart and Sydney - and heard

>from others on this list and friends form Hobart who regularly go to

>Melbourne - every CF centre acts differently.

>

>I have come to the conclusion that as a parent of a child with cf or

>any other medical complaint the parent has to be proactive for their

>child. Many cf centres wait till the child gets very unwell before

>treating the causes. I am not that patient a person I do not like to

>see my child in pain or in trouble with their health so I joined this

>list and have learnt a wealth of information and try to put some of

>it into practise.

>

>The best advice I can give you is find yourself a good GP or Cf

>centre that you feel LISTENS TO YOU and you suspicions about your

>childs health. You are the BEST judge of your childs health. It is

>amazing how quickly you learn what type of cough your child has.

>

>I hope I have not depressed you. I am sure your little one is

>beautiful and is the light of your life. Congradulations on your

>pregnancy.

>

>Terri

>from Hobart mum to Ainslie 11 wcf and Connor 7 nocf

>

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