[tri-med] Re: Hearing Loss

----- Original Message ----- 
From: "Jude Wolpert"
>> kamren says they dont even use ch in
> australia anymore.

No - you cant even find it in the MIMS (our prescribing manual for drugs). 
You can still get it - but you need an authority from the government to get 
it. Which means the prescribing doctor has to convince them that its the 
only option. Its been that way for about 10 years now, some US hospitals are 
also making the move away but its a bit like phenobarb - been around for a 
long time so people still use it, even though there are better and safer 
drugs available these days. It still has a place, just as phenobarb has - 
its just not as safe as people like to think it is. (and not with my child - 
we dont do phenobarb either!!! - thats devil medication, well it makes a 
devil out of my angel yukkk)

The thing is you need to know what the pro's and con's are of ALL 
medications. Sometimes you don't have much of a choice and you have to make 
an educated decision.

I had to do that with Vigabatrin. Short version.
Vigabatrin is an anti-epilepsy medication, but sometimes, rarely, it has the 
nasty side effect of causing vision problems. Alex was having these 
Shapiro's crisis (when his autonomic nervous system shuts down and when it 
does he eventually goes into respiratory and cardiac arrest). His crisis are 
severe and there is no known treatment for them - well not one that works.

His neuro discussed with me the possibility that Vigabatrin might help and 
prevent the number and severity of the crisis as its a GABA inhibitor. I 
read, I researched I talked with other tri families whose children were on 
Vigabatrin for seizures(which at the time wasnt approved in the US due to 
this nasty possible effect on vision but families were getting it from 
Canada at a horrid cost). In the end I decided that it was worth trying - it 
boiled down to vision or being alive. I figured his vision wasn't much use 
to him if he was dead anyway so we tried it.

Well the vision side effect is rare, but we all know what odds mean to 
tri-ers and sure enough Alex did start to have vision problems after about 
18 months on it. Because I was aware his teachers were aware and as soon as 
they saw the problem emerge we stopped the drug. He got most of his vision 
loss back as it is reversible if you stop the drug quickly enough.

It had made some improvement to his crisis, but not enough to warrant losing 
his peripheral and contrast vision. There was a sister drug, Gabitril which 
didnt have the vision side effect, unfortunately it didn't help his crisis 
at all.

I learnt all I could, and then had to make a choice. OK it didnt work, but 
it was at least an educated choice and I went in with my eyes wide open 
knowing the risks. No one can do any more than that. Any decision, any 
informed decision, made in love is the right decision.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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