Thank you so much I was wondering what to do about school she has been so upset because of all the work she has to make up. With this flare up she misssed almost three weeks of school. She is almost finished making up her work. Her class is on a block schedule so they do sixweek grades in three weeks so she missed almost all of the class for her six week grade

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Cassmom....

I had TOS 20 odd yrs ago with bi-laterial first rib removal done to rectifiy my problem... Pete.. that is great advice... run threw the color/discoloration test as that is a given for TOS... my hands would turn virtually black when down at my side and lifted over my head they would blanch right to white immediately.... and much pain in my upper arms... mine was due to a car accident and I had 100 % blockage on my left side and 90% blockage on my right side.... now one can tell me 20 + yrs. later if my RSD stems from my TOS but again Pete.. good one.. on the RSD bone pain discription//.. that also is right on as it is pain the is so relentless and can not be confused by anyother pain... it's deep nerve pain.. burning and in my case constant!!!

This is a great site with many wonderful people who suffer terribly with RSD and many other afflictions.. we are here to help each other and welcome to our family, cassmom.. I am sorry .. as it must be just aweful to watch your child suffer with such conditions as ours... I always say I much rather it be me... it has got to be me to be the one ill as I couldn't stand to see any one else go thru this...

Lets us know whatelse we can do for you... I send a painless hug for your daughter...

Hi Cassmom,

How are things going? One thing you want to do is make sure that her stress level is not heightened. One thing my daughters doctor always tells me is that stuff happens that we can not control. Get the diagnosis from her doctor and call her guidance counselor and set up an appointment. If you need help or any questions you can PM me with your phone number. I will call you and we can talk. I am also a public school teacher. I don't know what state you live in, but 504 plans and IEP's are national, so the same laws apply. Don't wait, be her advocate and get this done as soon as you can. Have a wonderful Thanksgiving.

Sandy

Well I am not sure how things are going. I thought things were getting better and now it seems that things are getting worse again. Some of the physical therapist (all in the same office) seem to take it easy on her when she has more pain others seem to think she should work through it and it will help make her feel better. I don't know how tough to be. I let her leave school the day before yesterday because she was hurting. How do you know when to make them stay and when they need to go home. I feel horrible because I do not know what to do to help her and make her feel better.

Hi,

Well, I am a firm believer that if she hurts she is hurting. She knows her own body. My daughter is on virtual School right now. We have the public school online in Florida. She will be having a pretty tough time. Do they have a hospital/homebound program that she can enroll into until this is under control? Most schools do. Have you talked with them about a 504 plan? That really needs to be implemented soon. If you would like for me to call you this weekend, PM me with your phone number and we can talk.

Sandy

No ice!

I started in with this condition when I was 12, after an evil knee surgery to treat an injury from gymnastics. And the PT afterward was terrible. Ice made everything so much worse. (There are actually physical reasons for this.) Swelling, redness and pain are not things to just push through. (That saying "no pain, no gain" should just be destroyed!)

For me, at this age, depression and confusion was a huge part of my experience with RSD. I really wish that my parents had sent me to a therapist when I was younger. Adolescence is hard enough, but this just compounds it. She needs a place to vent and let loose and have someone hear her. There are just things that you cannot tell your parents, and kids have a huge tendency to not want to worry their parents too.

I think that school is really important, both academically and socially. Even if she even goes for half of the day and comes home, this is still a great thing. I am glad that my parents really tried to keep me in school as much as possible.

Hope this helps a bit!

Lynns

Hi Lynns,

I am with you on the school thing, but everyone is different. I am a teacher myself, and my daughter is in high school right now. She went through A flare this year and ended up having ketamine infusions. She started the year, full time in the school, but caught the flu and it threw her into a flare. She has been in and out of school, in Hospital/Homebound school, in the Public school full time, on dual enrollment and doing virtual school. My daughter has tried everything, we do what benefits her at the time of her flare. Going to school with swelling and pain and walking hallways having students bump into you can be miserable. She has also been fighting this since she was 11 years old. My daughter is an Honors/AP student, and her education is very important. but, sometimes you have to be educated at home in order to heal. Everyone is different.

Where are you in your education right now? Are you in College? Have you conquered this disease? I hope you have. Good luck to you.

Sandy

Hi Sandy-
Don't worry- I know that everyone has a different comfort level, and I truly don't want you to think that I am preaching one thing for everyone! That's great that your daughter is a good student- I was a crazy AP person, and I think that it's good to be able to have control over some part of your life when you're going through this. It's good to have something where you can do well and have things go right. And it can get you far! I finished UCSD with a degree in neuroscience, and I had a full scholarship. (Sorry if that's bragging, but I worked my butt off for that and made it happen even with the RSD.) Right now I'm on waiting lists for nursing school.

I know that it is hard dealing with this and being a teenager. Being a teenager is hard enough, but then throw pain on top of it and it can be overwhelming. I have a SCS now, which I got after my first year of college. But the last year of high school was really bad for me and I had a lot of blocks. Those helped immensely, and then I moved onto RF ablations, which helped and lasted longer. I remember having one a couple of days before AP tests my senior year, and bringing a pillow with me to my AP lit test. The moderators thought that this might be some sort of banned item that you couldn't bring into the test and tried to make me leave it behind. I finally convinced them that there was no way I could be cheating with a pillow.

It is hard when your friends' focus in on what shirt to wear to a party on Friday night, and you are thinking about your upcoming procedure or meds. It can be a very different place that makes you feel very abnormal. My mom was very much in denial about me being depressed when I was in junior high and high school, which made it even more difficult. That's why I always ask parents of patients if they have ever considered getting their kids counseling. Looking back at it all, I know that this would have made a huge difference in how I dealt with everything, and my happiness. These days I really try to focus on the mental as much as the physical, and it really makes an amazing difference in my life. There are some really great books on mindfulness, and you can also even download guided meditations from the UCSD Center for Mindfulness.

http://mindfulness.ucsd.edu/mbsr.htm

These are great not only for patients, but for caretakers too. Stress is stress, no matter where it comes from!

I haven't conquered this, but I am at a much better place than I was. Throughout UCSD I had my SCS wires revised a lot. Around 3-4 times a year. But for me it was worth it. A couple of weeks worth of surgical pain to have reduced pain the rest of the time. My wires recently moved and the SCS isn't working as well so I need to have another revision. I have my bad times, and there will always be days where I can't move. But I am also happier than I have been in years. I have learned to let things come as they may, while still being proactive. And I like who I am today. That was really hard for me to learn how to do.

Hopefully this helps you a bit... to guide your daughter past some of the holes that I fell into while dealing with this when I was in high school. And if she ever needs to talk or ask a question of someone who has been there and done that, I would be more than happy.

Lynns

Hi Cassmom,

I'm SO sorry to hear that your daughter has been diagnosed with RSD! I really hope you can find something to help her and ease her pain and symptoms soon!

I'm 14 and also suffer from RSD. I developed it when I was 12 years old after an ankle sprain to my left leg and it has since spread to both arms. I've tried all sorts of medications and treatments but none have really helped. I was in a wheelchair for 13 months after a nerve block caused me to lose my coordination but thankfully, after an intense Physiotherapy (PT) course, I am able to walk short distances again.

I currently don't attend school due to friends not understanding and it being too much for me. I've tried going back many times and each time, I end up in a flare because of it. I am currently at College 3 half days a week doing a course in Health and Social Care for 14-16 year olds and attend a special school centre the other days for kids with disabilties and other problems. We are looking at the possibility of moving schools though as they don't really give me enough work to do and i'm afraid I wont get the grades I need to go onto the higher level college course if I continue going there.

As someone else said, RSD can often come and go and you can have periods of remission. My leg is permanently affected by the RSD and so is my left arm but my right arm seems to have flares off and on - though it always hurts to some degree, thankfully it isn't half as bad as my leg!

Does your daughter have PT? It's important to try and move as much as possible so that might be something to look into.

Please know that you are both in my thoughts and if you or your daughter ever want to talk, I am here for you (and my mum is too). I understand how hard it is dealing with RSD.

Take care!

Alison

We are goign to PT three times a week now and doing exercises at home. Sometimes I feel horrible for making her do the exercises because I can tell how bad they hurt her. She hasn't got on this site yet I was wanting to make sure it was a safe place for her to read before I let her get on here. Everyone has really been suportive and I plan to show it to her this week