Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 08-03-2011, 12:15 AM #1
ddd15 ddd15 is offline
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Default Teen needing ketamine infusions

Hi all. I have been looking in to ketamine for my 15 yo daughter. I have the list from RSDSA, I'm talking with some people on facebook, but I feel like I'm not having any luck. Every doctor that I have contacted so far will not see my daughter because of her age. We live in Texas, but are willing to travel.....I just don't know where! I am also more interested in someone doing this as inpatient, not outpatient.

Any suggestions out there?
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Old 08-03-2011, 07:10 AM #2
Cricket183 Cricket183 is offline
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I'm not sure where in Texas you are but there is a doctor in Dallas that does ketamine infusions. I know he also sees teenage patients. My son went to him for migraines starting at 16 and I saw him for several months for three series of 5-day ketamine infusions for RSD/CRPS. Unfortunately, the ketamine infusions did not help me. His name is Dr. John Claude Krusz, PhD, MD. 5446 Glenn Lake Drive, Dallas, Texas (214)750-6664. (If you are familiar with Dallas his office is off 75 & 635.) Hope this helps.
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Old 08-03-2011, 01:27 PM #3
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Originally Posted by Cricket183 View Post
I'm not sure where in Texas you are but there is a doctor in Dallas that does ketamine infusions. I know he also sees teenage patients. My son went to him for migraines starting at 16 and I saw him for several months for three series of 5-day ketamine infusions for RSD/CRPS. Unfortunately, the ketamine infusions did not help me. His name is Dr. John Claude Krusz, PhD, MD. 5446 Glenn Lake Drive, Dallas, Texas (214)750-6664. (If you are familiar with Dallas his office is off 75 & 635.) Hope this helps.
Cricket
Thanks Cricket. I have heard of him, but I'm a little unsure because I think he doesn't take insurance and has does the infusions in his office. I feel like for at least her first round it needs to be done in a hospital.

But really....what do I know! I'm interested to see what others think about this.
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Old 08-05-2011, 07:01 PM #4
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Thanks Cricket. I have heard of him, but I'm a little unsure because I think he doesn't take insurance and has does the infusions in his office. I feel like for at least her first round it needs to be done in a hospital.

But really....what do I know! I'm interested to see what others think about this.
You are correct...he does the infusions in his office. They do monitor you closely as far having you on a continuous cardiac monitor, blood pressure monitor, and oxygen saturation monitor but there is one nurse for all the patients (usually 4 at a time). They will allow you to be with your daughter the whole time. I felt comfortable being by myself because I am a RN and I know what to watch for but I understand your reluctance. It can be very scary.

As far as insurance how they worked it with us is they had us pay for the treatment upfront then we filed with our insurance and they credited us for our next visit or reimbursed us. They filed all the paperwork. I'm not going to lie it was very expensive and being that it did not work for me I'm not so sure it was worth it but I had to try it. I will try almost anything to get rid of or try to treat this monster. Also my insurance did not cover the ketamine itself because they considered it an experimental medication at the time (Feb-June 2009). I think a lot of insurance companies now cover the ketamine.

I hope you are able to find a doctor who will do the infusion inpatient for you. There is another post that has a list of doctors that do ketamine infusions. If I remember right there is a doc in San Antonio and one in Houston listed on there. You might try them. I don't know anything about either of them. There is also the International Pain Institute associated with Texas Tech University. I don't know if they do ketamine or not but you might look into them. Just a thoguht.
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Old 08-07-2011, 07:47 AM #5
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My daughter has had many ketamine infusions done, both in DC and NY, inpatient and out. All have been completely covered by BC and all were done in a hospital or outpatient center.
If you are on FB you might want to join Ketamine Klub where there are many ketamine patients who can offer great advice..
Liz
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Old 08-07-2011, 09:23 AM #6
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My daughter has had many ketamine infusions done, both in DC and NY, inpatient and out. All have been completely covered by BC and all were done in a hospital or outpatient center.
If you are on FB you might want to join Ketamine Klub where there are many ketamine patients who can offer great advice..
Liz
Liz, I think I have talked with you. I'm also in the yahoo rsd parents group. I have sent a request to join ketamine klub, but I still haven't been added. I've been able to contact a couple of members directly though, and that has been helpful.

Do you think it is necessary to do her first infusions inpatient? I feel like it seems safer and maybe a higher dose is used inpatient which seems to be more effective.

I guess if I don't come up with some doctors closer to home, we may have to head up north. It seems like that is where I keep getting names from.
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Old 08-09-2011, 06:14 AM #7
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I did not realize you needed to be added to KK but you can at least access all the postings while you wait. It seems to have the most people who have tried ketamine together in one place.
My daughter tried outpatient several times with mixed results but it was the inpatient that really did the most good and now the outpatient boosters are so much more effective.
There are more and more doctors using ketamine and the list seems to grow each week. Before traveling, I would contact your local pain mgmt doctors who are anesthesiologists and find out if they are using it. Read ReMission Possible so you are well versed in your knowledge; the doctors will definitely work with you more if they know you have done your research.
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