Re[4]: Hi Terri!

[Guest guest]

Hi Sue

For us, its a matter of trying to find a balance, between protecting

and treating Angus, and living a life with him that includes fun and

learning and good times. Sometimes we get it wrong.

The picture has changed so much in the six years we have been dealing

with this disease. Four years ago, when Angus was diagnosed, our neuro

called the mito cocktail 'hocus pocus' - now every kid I know in our

State who has a diagnosis is on it.

We also agonise over whether we are doing everything we can do. My

worst nightmare, is that I will lose him and then the next week hear

of something that might have helped. But this is just me, and I'm

willing to admit that there might be a touch of neuroses involved. You

see I've already lost one child by default - to a misdiagnosis and

inappropriate treatment. So I veer between being proactive and extra

cautious.

After andra died, and when Angus became ill, we made the decision

that we would offer Angus every opportunity that we can - and that

included diagnosis and access to treatment. We've done this because

its the right thing for our son and our family. We're prepared to

consider everything. If a witch doctor turned up at my door and

offered to dance around his bed, I'd think about that too. But I

wouldn't automatically let him in. We've turned down some treatments

and we've stopped serial testing unless its simple and non-invasive.

But we aggressively pursued steroid treatment and now uridine because

we were impressed with the results - we'd done our homework. Our goal

was to stop or reduce the seizures, and therefore improve his

immediate quality of life. And we are very lucky to have a doctor who

trusts our judgments about our child and who accepts that we have

become the 'experts' in his case.

Actually I happen to think that Angus is one of the mito success

stories - at least he is to his proud mum and dad. He's 100% alive,

and he remains a joyful and loving child, years after many of his docs

had urged us to give up. Perhaps that's what Dr Kelley means by 'doing

fantastically well'.

Warm regards

Lynne

______________________________ Reply Separator _________________________________

Subject: Re: Re[2]: Hi Terri!

Author: " Sue & Jack " at SMTPGateway

Date: 14/11/1999 21:02

Hi Lynne,

I understand 100% where you're coming from. My kids are thought to

have Leigh's or a varient thereof. Years ago when we first saw Dr. Haas he

said nothing about all these vitamins so I figured he knew what he was

talking about. I mean the kids didn't seem to have anything chemically

wrong with them. All their tests were fine and even the lactic acid

protocol did, he metabolized everything fine. Yet the kids are

regressing. We've started the B-50's and CoQ, but refuses to take

them. At least with I can put them in his tube. I haven't really

seen a difference with them on it, but we'll keep trying for a year. I am

seriously considering a tube for as he is getting bad. He has no

energy anymore, can't sit without falling over and it's getting harder for

him to eat. Most of it ends up ON him, not IN him. ) At least with the

tube I can get the meds in. Sometimes I feel I'm not doing enough. I read

on the lists about people saying never give up, keep looking til you find a

cure or a diagnosis!!! Well with mito you could drive yourself nuts

looking. Where do you draw the line? How much bull do you put the kids

through? Or do you say ok lets manage as best we can, but face reality and

live life NOW instead of next year. Sometimes I doubt myself and wonder if

I'm doing the right thing for the boys by not testing them or taking them

all over the country looking for the answer. What if the next doc had the

answer? What if the next doc after that had the right meds? What if? What

if? I could what if myself to death! I guess no matter what I do I will

feel guilty. I've come to the conclusion it's a mother thing. ) I don't

think you are doing anything wrong. All we can do is what we can do.

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

>snip<

> However wholesale reassurances that if we can just find the 'right'

> cocktail of vitamins for our children, we can protect them indefinately,

leave

> those of us with children who continue to deteriorate in the unwelcome

position

> of wondering what we are doing wrong. I sure wish someome would tell me.

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