New Member Daughter with RSD started 13 now 21 need dr
 

Hello,
My daughter has full blown RSD head to toe. She just saw a dr at Drexel in Phila who wants to put her in a 5 day coma in a South American Country. Insurance will not cover. It took 3 years to get this appt, (was orginally for me, I was misdiagnosed with RSD for 10 years. My RSD was really Chairi.)

My daughter has been ill since middle school and is now in college. She needs relief. S/S: full body pan, rash, mottled skin, feet bluish, cold extremities, headache nonstop for at least 5 years. She has been to the "best". One dr at NY Presby said she will never be able to work FT nor would she be able to go to college. NEED ANSWERS.

There are plenty of Ketamine infusion options in the US. Inpatient or outpatient. Insurance may or may not cover. You might want to check out the Ketamine Klub on Facebook.

If you state where you're located, someone will likely have a referral for you.

bucks county pennsylvania

Hi there,

I would be very surprised if you would be able to obtain the ketamine coma in a south American country, to my knowledge it is not at all available. Dr. S has been promising that treatment to his more severe patients for a few years now.

I am one of the admins of the Ketamine Klub. There is a ton of great info on our board that will hopefully help your child. There is also a link to a board for teens.

I truly wish you the best. Xoxo. Sandy

My daughter's dr Sch... use to send his patients to Germany for the ketamine coma. Germany will no longer accept patients so he is sending patients to another country. My daughter is now 21

Ketamine
 

The ketamine coma is not done in the us...but there are plenty of docs in the area doing low dose. If you need some names of docs in NYC let me know.

Debbie

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.

Neurochic has a wonderful and so well-worded reply that included what I was going to say and more. But I just want to say that I realize how desperate you must be seeing your daughter going through all that she is, and I really hope you can find something that works well for her. There are people that these comas have worked for and people who have had devastating results as well. It is a decision that has to be yours and your daughter's as well as the doctor's and I wish you the best of luck in making it :hug:

THANKS Neurochic!
As a nurse, I worry about all the complications you have mentioned. We saw this dr the day of Hurricane Sandy. It took a month for the office to call the neruontin. My daughter and I left msgs re. the #3 meds he wanted her on. I finally got through to the nurse and she said she didnt know why we even came to the office or how the dr even made it in. She said they were closed. (We kept calling and the answering service and his office was the only one that NEVER closed. My conversation with the nurse did not go well. She said the dr NEVER remembered saying anything re. meds nor did he write that in her chart. So despite what he told us, the nurse/dr and now prescribing neruontin 300 three times a day, told her to take an antidepres and NSAID ic ibupro. The dr said my daughter's treatment at CHOP was barbaric (paraphrase). We were so upset after waiting for 3 years, the hurricane and her illness, I cannot remember the words. It maybe Mexico where he wants to send her... started out as San.... again we were very upset. My daughter's treatment was INTENSE physical therapy.
College is becoming difficult. Every time we have a storm, barometric pressure decreases, pain becomes more severe.
RE. % of those going to another country, well they didnt sound that great. Eighty went to Mexico 43 came home pan free, the rest pain returned in a year. I do not like the odds! I will copy/paste the info you gave me and will pass it along to my daughter.
Thanks for taking your time to help us!

Yellow,
Thanks for your input. I am just sick to my stomach as I am sure all of you have felt as you have gone through this. Myself and others have taken her to "the best" for a diagnosis. I felt there was something else wrong since he also has a bleeding disorder. It was CHOP in Phila who Diagnosed her.
I keep telling myself it's RSD and she has the "best" dr. I have encouraged my daughter to speak to DR Schw. again for other treatments vs coma.

THANK YOU ALL FOR YOUR TIME AND PATIENCE.