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Sorry am slow responding-- so she was diagnosed in March 2021, and after failed meds and ganglion stellate block, we started ketamine in April 2021-- 3 weeks twice a week to begin, and now a booster treatment about every 10 weeks.. it's a rough few days after the treatments (completely exhausted and can't do anything)- but then the pain starts to lower slowly and can get as low as 2 or 3- which is great... Before starting these treatments, she was at an 8 most days-- As far as side effects- the actual ketamine is out of her system, from what I understand, within 12 hours-- but yes she is lethargic for a few days- but that's it.
Thanks for your comments regarding school-- even though she's a senior, we are considering helping her study for a GED so that then she can just do community college on her own terms-- as a full high school load has been so very stressful and increased depression/anxiety and she was barely able to pass last year. Concentrating and focusing for that many hours under pressure is just making things worse.. On a brighter note, I think her high school is going to allow her to continue in marching band-- the band director actually made her a special harness to allow her to continue playing the mellophone (her diagnoses are all in the left shoulder/arm/neck)-- so so thankful-- it's basically the last 'sport' she can participate in... thank you again for all of the great info!
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This is my first post here and I'm stunned at reading your comment. My daughter had a left side brachial plexus injury in March 2021 that turned into CRPS. It's been a hellish two year for us. We did the FIRST program at Cincinnati but her GI pain (where it seems to have shifted) was so bad she couldn't eat and became too unstable to continue. It was one of the worst days of my life.
It's continued another year and we can't go on like this. It looks like Mayo in Rochester is going to be the most likely option for her if they'll take us, and I'm anxious for a thousand reasons.
But we need to get her back to band. She should have been a drum major this year.
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@losherwood -
There are no deadlines for response times, no worries! Thank you for explaining your daughter's journey further and how the Ketamine process works. I'm so happy that she's finding better comfort.
I have a daughter in her senior year of college who has had some health bumps along the way since high school. I understand the pressure your daughter is facing senior year of high school and how that pressure can intensify her pain. I also understand the pressure you face as a mom trying to what's best for your little girl. If getting a GED is most helpful at this time and your daughter's on board, along with the school, that may just be what's best in the moment. Chronic conditions throw curve balls. Strategic planning and thinking outside of the box can make all the difference.
Ohh myyy goodnessss... this picture is everything! 😍 Thank you much for sharing. It made me smile.
How awesome that the band leader helped with an instrument strap. Kudos! Clutch move! It'll be uplifting for her to stay connected with band and I hope all works out. It's the little things, that mean so much, right?
Please keep us updated on your daughter's CRPS journey as you are able. I will be cheering from the sidelines and hoping for the best. Sending positive vibes your way...
PS: Both my kids were in band and played trumpet. 😊 Enjoy!