Quote:
Originally Posted by Sandel
Hi, I am so sory your daughter is having to deal with this.. and at such a young age too, and I realy feel for you as a mother too..
First I would start her on Vitamin C 500mg daily (ask pharmacist about dosage per weight) as soon as possible, studies have shown that Vitamin C (500mg - 1500mg) when given after a break and after surgery can stop up to 2/3 rds of CRPS from happening in injured people, she is at such an early stage too.. please see the link below about it:
Vitamin C hope for people suffering from extreme pain syndrome
http://www.arc.org.uk/news/pressreleases/13611.asp
Also when it comes to physiotherapy from every thing I have read and alot of the kids I have talked to.. it can realy turn CRPS around and put it into remission..
Children take to physiotherapy far better than adults with CRPS do aparently, and as long as you check out the facility thouroughly.. make sure they know CRPS and have delt with children succesfully, it may seem harsh but look at what progress your daughter made in that very short time.. and how quickly it took to fall back.. I think she would be a good candidate for this kind of multi therapy.
Physical Therapy
http://www.nationalpainfoundation.or...ysical-therapy
Pediatric complex regional pain syndrome
http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=15
Complex regional pain syndrome (CRPS) in children
http://www.uptodate.com/patients/con...wsrg&refNum=40
Baths.. Put epsome salts in her bath water the magnesium in the salts helps sooth the pain and reduces swelling.. elevate after the soaking.
Best wishes and hugs,
Sandra |
Hi Mom & Daughter,
It's loretta- I'm glad you read about NO ICE! Good, like Sandra mentioned and others, PT is torture, I would be straped down on the table while trying to get my shoulder to work. My rehab Dr. that oversaw my therapy said it was the worst case she had seen. I don't remember the degrees. But I took pain medication before going to PT.
Water temperature needs to be Minimum of 86 degrees. We have a heater on our pool and I never get in it under 86 degrees.
I have RSD in my feet and legs, so I don't hang them over the side and have the blood flow= pain. I do walk every day whatever feels good, I've never been where I wasn't able to walk and I have it full body.
When I was diagnosed with RSD in my hand, and started PT, my hand Ortho Dr. oversaw my PT. He knew RSD and his PT people knew RSD. They did desensitization, which is very important. Because, like was mentioned, we are very sensitive even to wind. They had me doing it dailey at home too. I took 5-6 plastic bowls and fill them with different textures. I used cotton balls in one bowl, coffee grounds in another, sand in another, beans, sugar, anything that your daughter can tolerate. You could use pieces of fabric, and clothing is an issue for a lot of us.
Please don't beat yourself up- you love your daughter and did everything in your power to help her-you know that and we all know that. I'm still learning a great deal from all my friends here. They have given me hope beyond compare. thanks everyone!!!!!!
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PT alone is not enough like what was mentioned. You want a good children's neurologist that is great in RSD- like Cleveland Clinic Children
Hospital RSD Drs. A good Dr. dispensing the right meds is soooo important.
When I came back home with the diagnosis of RSD- I got a good neurologist and good hand specialist. I was a little late on diagnosis-so only got partial use of my hand back, but it went from frozen flat to being able to bend my fingers half way into a fist. So can type, cut my own food, button and zip clothes, tie shoes etc. The Tens Unit. the Oregon Dr. who diagnosed me, ordered for me, which my health insurance paid for, and paid for replacement lead pads. The Tens Unit helped my hand-it's not invasive-is a distraction to pain and I believe helps to desensitize the RSD limb.
Please know, as a mom, I know how much you care and love your daughter! She is so young and needs you to be calm and hopeful,and the friends here are all pulling for you both! Take care, loretta with soft hugs
