momofrsd |
05-28-2013 01:41 AM |
CRPS and high dose ketamine infusions
hello, I have a 14 year old daughter that has had CRPS for 2+ years in both of her feet and legs, causing her toes to become dystonic. As we speak I am sitting in the PICU for the 11th day of her high dose Ketamine infusion. Right now she does not have any pain. She is being weaned down slowly and also given ativan for the hallucinations she has been having, and being only 14 it is hard to understand that they are not real, but it causes her to have a lot of anxiety too. We are so hopeful that the pain remains gone at this time, this is her 3rd attempt at high dose(although they kept her on the high dose longer this time), and she has also had 2 low dose infusions for 96 hours which helped a bit, but nothing compared to this outcome.
I work for an insurance company and had to fight to get this done. For those interested you need to find a MD that will administer the medication and follow you through the hospital stay. They also need to consult pain management, and an internal med MD for things that could go wrong(electrolyte inbalance, keeping your airway healthy to prevent being put on a vent, and then to provide feedback on the weaning process. Once you find these MD’s you have them submit a request to your insurance company with all your medical documentation, things you have done that did not work, the meds you are on, blocks you have had, what your prior level of function is and your high ambitions and wanting to get better to return to work, be able to care for children, etc. Another thing that needs to be given to the insurance company are the clinical research papers showing the efficacy of Ketamine and outcome successes, including the removal of the medications you are on now, decreased ER visits for pain control, diagnostics that will no longer need to be done(given that the Ketamine is successful) It may be denied at first, so you will need to appeal. ADVOCATE for yourself, once the denial is made, ask for an expert professional review to be done again and then even take it to the DMHC or DOI where they really look at the outcomes from getting the Ketamine. I promise it is worth the fight! We need to all stick together on this and educate both MD’s and insurance company’s that Ketamine needs to be the standard of care for CRPS patients. I am a nurse as well as a Case Manager and I do this all day long for my patients that have different disease processes needing treatments that are “one off”. Please let me know if you want to talk or need additional informaiton. You can email me at : kasipes@comcast.net and I will be more than happy to help you. I hope this information provides you with a starting point on your journey to a pain free life!!!! GOOD LUCK
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