USA vs European medical culture? What should I look out for?
7/25/00 5:53 AM
The Upjohn story has astounded me for one main reason. It seems astonishing to me that that any parent who was not happy with the results of oral cortisol had difficulty changing the medication straight away!!! My son had epilepsy when he was younger and numerous drugs were tried without success to control the fits. Phenatoin(wrong spelling) worked best, but over the months the dose was increased to reduce the fits. However, our own observation was that the fits were getting stronger and lasting longer. We made an appointment to see the specialist and insisted on alternative therapy. Liam was put on epilem, which in his case stoppped the fits. As soon as we reached the fit free three year threshold, we requested he came off the drug. The specialists did not tell us it was time to get Liam off the drug to see if he had grown out of his epilespy. He has been fit free and more importantly, drug free for four years. Had we done nothing and gone with the flow, he might still be taking epilem today!!!Very scary thought. It is criminal that the medical profession openly gives the impression that the drugs given to children are safe. No drug on the market has ever specifically been tested on children. The reasons are self evident. This means that the doseage levels and medical benefits put forward by doctors are basically guesses!!! My long winded point is this. How can a doctor have the right to refuse the request for an alternative therapy from a parent who has concerns about a drug been given to their child. Every time a child is given a medical therapy, that child is in effect part of a clinical trial!!! As parents, we are the observers of those trials and our observations and fears should be respected. The precautionary principle is our childrens right and frankly, it scares me to think that there are endo's and doctors out there refusing to change medications that worry parents. Especially, when there are alternatives that work. Our experience here in the UK and France is that if you are not happy with a medication, the doctor will change the therapy to an alternative with no fuss. Should I expect a change in the US. Sorry it was so long Shaun P.
Shaun P.
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