Member
|
|
Join Date: Sep 2011
Posts: 246
|
|
Member
Join Date: Sep 2011
Posts: 246
|
The ketamine coma procedure was stopped in Germany some time ago because of the disastrous fatal and near fatal consequences there were for some of the patients. Its not only the ketamine itself that causes these risks, there are huge risks from infections, ventilation and so on. The only other country where it was being carried out, also on an experimental basis was Mexico - not a country well known in medical research circles for its strict clinical trial rules and pharmaceutical medicine controls.
I'm not saying that there aren't some people who have had benefit from this experimental procedure and I'm sure your daughters situation is heartbreaking and very serious but if the procedure is still available in Mexico and if you are considering it, at least research thoroughly the risks. Research also the long and short term outcomes for the patients who have survived the process because that will allow you to make an informed judgement about the risks versus the rewards. Those risks are significant which is partly why no other country will permit this procedure even on a trial basis.
The doctor who suggested that your daughter should have this procedure has certainly believed in its efficacy for a considerable time and is still regarded, in the USA at least, as a leading authority. He should be able to supply you with the available clinical trial data, case studies and follow up papers or at the very least references for these things so you can obtain them - if he is prepared to suggest it then he should be happy giving you what you need to make that informed choice. Once you have that information as a start point then you can do your own research to make sure that it seems to be as balanced and representative as possible.
Don't be afraid of reading the clinical trial papers and the published research rather than secondary sources of information like doctors websites and articles. They are often loaded with bias and personal opinion that isnt backed up with any evidence. Most of it isn't as technical as you'd think and you will be able to get a good feel for the situation even without a medical degree.
The issues of loss of career and education opportunities are ones which many people with CRPS have to deal with, even when they have a far less severe presentation than your daughter. It is bound to be a desperate situation for you as a parent and for your daughter too but it is one of the many hard realities of this condition. I always think that it is wise to hope for a positive outcome but to prepare for the worst. This might mean that you think about what practical and emotional things will help if your daughter is likely to be unable to work and go to college without limiting her or your hopes and aspirations for her in case her situation improves.
As others have said, there may be other therapeutic interventions you can look at, not knowing what has already been tried for your daughter, it is hard to comment. I can only imagine how difficult things must be for you and I wish you well in making these difficult but hopefully informed choices.
|