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 03-30-2012, 11:07 AM #1
Nikki486 Nikki486 is offline
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Join Date: Mar 2012
Location: Blissfield, MI
Posts: 7
10 yr Member
Nikki486 Nikki486 is offline
Junior Member
 
Join Date: Mar 2012
Location: Blissfield, MI
Posts: 7
10 yr Member
Question new memeber and not knowing what to expect

Hello my name is Danielle but please call me Nikki (my middle name is Nicole). My 13 year old son's name is Zach, he is 13 years old and has been just diagnosed with RDS. Like I said I don't know what to expect from this forum other then to share our story.
It has been a long year for us. Zach was playing football at my sister's house on July 4th, 2011 and when he kicked the football the point of it hit the front of his foot. Ever since then it has been a long journey. We went to his family doctor and found out that he had sprained it. Months passed and it seemed to be doing better. I then started to realize that he was walking on the inside of his foot instead of the correct way. We started to see a podiatrist after that and that is when he said that Zach's tendons in his foot were growing off to the side of his foot and Zach is also flat footed. In order to correct this he needed foot surgery.
On December 19, 2011 he had foot surgery. The doctor went in and corrected the tendon issue. Zach has 3 scares from the surgery. 2 are from where the doc put in pins and cadaver bones and the other 1 is from where the doc went in to tighten some of the ligaments and made him an arch. The pins were placed in his big toe area and on the outside of his foot near the ankle part. We were excited because we thought we were on the right track. Every week we went in so Zach could get a new cast because he had to keep it immobilized for 4-6 weeks. Tell that to a 13 year old boy with ADHD .
The doc was telling every time that he has to move his foot when the casts are removed or else he will get RSD, in which will be no fun road for him or our family. Well, it would hurt him or just wouldn't move. We have been going to physical therapy for 6 weeks now. We went to pain management earlier today because the doc thought that Zach would benefit from beta blockers. We were nervous about this because for 1 thing they are shots.
We found out yes in fact Zach does have RSD and it was nothing that he did or nothing that I did to prevent this. It was due from the surgery that he had. All along the doc has been blaming Zach. These are some of the things the doc said ....... Zach should be running by now, Zach should be a man and take on responsibility for you pain, be a man Zach and work through it, you can do it....... Yes in a way I agreed with the doc.. It has been 4 months since the surgery and he still uses crutches and hardly any weight bearing. Also all along we have been telling the doc he has been having serious pain since in his big toe area only.
I got side tracked ...... at pain management they told us what we knew all along. Zach was going to have the beta blocker shots. 1 shot for 5 weeks. This way the neurons would stop transmitting pain to his brain and rest so he could walk. Sounds great!!!! We are ready for the 1st series in a week.
Well, not exactly. I get home and feeling good about what was said and hearing that it wasn't our fault. All of a sudden the phone rang. It was the doc's receptionist from pain management. She told us that with Zach's insurance there was no way the doc could help us. His Medicad wouldn't cover the Outpatiant procedure, in which means no injections for Zach. I am at a loss for words and not sure on what to do from here.
After I heard this I was in shock. How could we have went from a 13 year old having something small, to a 13 year old that needed surgery, and now to a 13 year old who has RSD and God only knows if he will be able to walk again on his own. Don't get me wrong he is a pro at crutches but can't walk because he has no range of motion and every time he does walk he is in alot of pain in either his ankle, his big toe area, or his heel. I am trying very hard to keep my head up and trying to be hopeful but it is hard. I hope someone out there reads this and can give me some advice
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