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

I would like to welcome you to Neurotalk. This site is filled with lots of information and lots of great people, who will try and help guide you in the right direction.
I am sorry to hear about Zach's dilemina with the Dr.'s and his diagnosis of RSD. I would recommend that you not only get a new podiatrist but also get a new pain managment dr. as soon as possible. Early treatment is essential in RSD, especially with the chance of remission. If you are unsure as to what dr.'s take your insurance you can also call the insurance company and ask them.
If they have noone that will do the injections ask them about filling an appeal.
Therapy is hard. Make sure they "DO NOT USE ICE", also it is important for him to continue to go and work with an experienced therapist.

Well welcome to the forum, I hope this information helps.

hello and welcome, you'll find lots of helpful advice and kind words here. i'm sorry to hear about your son. i got RSD in my right ankle when i was only 11 after a surgery and had my surgeon say many of the same things to me.
please help you son to keep his ankle moving, if it is sensitive to touch, start slow with desenitation, a tissue or a cotton bowl. The worst thing for RSD is to not move or use the limb. make sure he is at least getting up with his crutches and move as much as possible. Trust me i know it's painful, but early diagnosis is the key to a recovery. you need to get him in to see a pain management doctor who actually knows RSD. where are you located? There are a few children's hospitals around that have been benefical. if at all possible also find a pt that is fimilar with RSD. as said above NO ICE!!!!

Thank you both. Right now I am trying hard to find a pain management doctor for him. Like I said we seen 1 yesterday but they won't take our insurance. I am located in Blissfield, MI. He has been trying to walk on his own the past couple of days but after he does so he complains of pain in his heel and ankle. He has an air cast and also just got a Dyna Splint yesterday. There were nights where he was up crying 'cause the pain was so bad. Heat works wonders and again thanks for the no ice warning. I am sure that would hurt him worse.

He has been going to physical therapy also. We just got approved for more visits as of yesterday. The odd thing about all of this is his podiatrist dr. knew this could be a problem from the beginning and blamed Zach instead of saying what the pain management doc. said.... this could happen due to surgery. So the visit wasn't a total waste of our time. Yet still upsetting.

With the pain management being denied Zach could be facing another surgery only because his body is not excepting the cadaver bone. The doc was talking about going in and putting a plate in. With Zach having RSD now it makes me wonder even more. I mean could it get worse?

becareful with all the splints and casts, i was casted for the major part of 4 years which has caused unreversaible atrophy in my right leg. yah heat is my best friend, maybe get a heating blanket if you already dont have one. warm baths are also wonderful, it's another story getting in and out.
i'm sorry about the doctor being arrogant, but just be thankful that you got a diagnosis so early. it took my 8 doctors and 4 years, that is the same for many of us.

Yeah we got lucky with the diagnosis that everyone was guessing what it was already. I have 3 numbers to call on Monday for new pain management places here in Michigan. The one we went to yesterday was in Ohio, like that makes a difference. As for the splints, they are temporary until he can get his foot at 90degrees then he will be free of them ;-D

I am terribly sorry to hear what you and your son have been through. Bad enough going through this myself...I cannot imagine what it must be like to watch your child go through it.

The good news is that children have some of the best chances and history of successful remission with RSD. So if you can get him to the right doctors who know how to treat it then he may very well go into remission and not have to deal with this for the rest of his life. I have heard about (and hopefully someone else can jump in with more specifics) that there are some programs at some Children's Hospitals that do wonders with kids who have RSD. Early treatment is the best chance for success with this so maybe you should start looking into some of those programs ASAP. I would recommend doing a search on here for the information and also visiting rsdsa.org.

There will be a lot of intense physical therapy involved and it will be difficult...but so worth it. Definitely avoid ice and immobilization as much as you can as those will only progress the condition further. I find that warm baths with epsom salts are great and I also like those stick on heating patches you can get in the pharmacy (OTC...near the first aid stuff)) for putting on my ankle and other RSD areas.

Sounds like your son is a real trooper so far. Try to stay positive and I hope that you are given some hope by the fact that he does have a better chance than most at remission due to his age and that it is still fairly early on since this started.

Best of luck to both of you and keep us posted.

yes there are some fantastic! chidren's program. Children's hospital of philadephia and Children's hospital of Boston are both very well known, and have given many children there life back. me being one of them. i went to the program in boston for two months, in a wheelchair, left walking. They did not cure me by any means, but the coping techniques they teach there are fantastic and also the physical therapy is amazing.
please look into these programs as said before, the window of remission is only open in the beganning. Good luck!

Whatever you do, do not give into insurance companies. Keep on challenging them.

On a personal note, I had a close friend going through the same ordeal. He turned out fine. It was not pleasant or anything you would recommend to anyone, I remember most of him spending in gypsum, yet he walks normally and anything is unremarkable about him.

So, hang in there. He will just be like anyone else in a couple of years. I know that this is hard, but just stick to it.

Steve

Cleveland Clinic has a wonderful kids rehab program. My daughter went to Boston and she too went in a wheelchair and came out walking. Please look into these programs, they do wonders for kids. Cleveland Clinic also has good doctors who know RSD too. Good Luck, stay calm, stay positive. He is young and remission is possible.