Hi. I have just been reading about parents who have RSD and are raising teenagers. Well, I am a mom with a teenage daughter who has RSD, the result of a sprained ankle when she was 13 and in a school cross-country run. She is now 19, and has missed all her teenagehood - dating, social life, volunteer activities, etc etc. Of the four years of high school (grades 9 through 12), I would say she missed about a year of school. Luckily, she is very bright, and with the reluctant cooperation of her teachers, I took work and assignments back and forth every day, from home to school, so she stayed on the Honour Roll and won scholarships to university. University is proving to be a major challenge, and we have found that the stress of dealing with constant pain and a full course load is too much, so she ended up dropping some classes. This fall she will only take 2 instead of the normal 5 courses, and so it will take her a lot longer to get her degree.
Aside from the horrible pain, the inability to walk unaided, the distress of being in so much pain all the time, the loss of a social life, she is now having to cope with a new problem, that is thin skin that is literally springing leaks, and the wounds are not healing. The tiniest thing, and blood is running down her foot. I am using Jelonet, the impregnated gauze dressings used for burn victims and skin grafts. These are painful to put on, as anything touching her skin is painful. She is also on a variety of powerful pain killers which often leave her groggy, and that makes school work impossible to do.
It took 18 months for a diagnosis, during which time she was sent from one doctor to another, all of whom did the wrong thing. Her leg was in a cast for 6 weeks, and we know that immobilizing RSD is the wrong thing to do. She was told it was all in her head, and sent to a psychologist who gave her a "go to your happy place" tape to listen to.
I am wondering if anyone has any ideas about new effective drugs and also about photon therapy?
Thanks.
Judysh

I don't have the answers, though I have experienced much that your daughter has, and know what this is like. I am nearly 17, and RSD has ruined a lot of things for me.

Tell her to keep hanging in there, and don't give up hope!! ((huge hugs))

We can talk to each other if you'd like. Just drop me a PM.

Hoping her day is going as well as possible.

Judy, I am so sorry to hear that your daughter and you must go through this. There are several young people here who can be a great source of comfort and knowledge for your daughter.

Aside from the health and social concerns... is her scholarship in jeopardy because she can get fewer credits each term? That would be just awful, I so hope it isn't the case. There should be (if there isn't already) some kind of special dispensation for problems such as hers.

Welcome to "the family", hon. Here's a for you, and pass one on to your daughter, please.

Hi,

I am 21 and have full body RSD after an accident when I was 16. I am now in a wheelchair and all that rubbish. I am at university now and it is very hard, but I love it! I am only a first year but it has taken most of that to get used to being independent (well, I have live in carers) and managing this. The work load is very hard to deal with, as is the fogginess.

I don't have the answers, but I just wanted to say I have been there and I know how tough it is, even now, to deal with the workload. Also, having to miss out on "fun" things is hard - whilst all my friends were at the summer ball I was in bed in tears with pain and frustration from having the RSD and a flare.

It is very very hard but she CAN get through it! If she wants to PM me I am happy to give you my email address if she wants to chat about it.

Much love

Frogga xxxxxxxxx

Hi Judy,

Sounds like our girls could be sisters! My daughter just turned 14 and has been on this path since she was 8. Schooling has been an issue the past three years as she has missed most of them! I know you said she is at the University already, but for any other moms, there are options for teachers to come into your home and do the shuttling of papers and lessons. It does really take some of the stress away. From your post, I am not sure you are in the United States but for other moms that are,

Here is the other option that is available. There is a federal law that includes something called a 504 plan. This is generally, not always, an academic based plan that spells out exactly what modifications and options are available for a student. This plan can, although I haven't had to do this yet, transfer to a work environment for a student. This is a tricky plan, in that not many people have them and can be difficult for schools to accommodate, simply because they are rare and need to do some research to figure it out. All schools are aware that this is an option. Generally, a doctor needs to state that the child requires modifications due to a disability. Our dr and school have been more than accommodating. I would start with the special education office (NOTE: unless there are other reasons, and IEP from special ed is NOT needed), they just might be the place to ask who handles the 504 plans. Often, it is the guidance area, but in some districts, special ed may. School nurses are often involved as well. This will also give you a case manager at school who is responsible to see that the plan is carried out. We created a three tier plan for my daughter this year--one tier, at school and life is good, second tier, part days at school, third tier-reentering school after time off. The time at home is served through 'homebound' education where a dr says the child is unable to be in school and our district provides a teacher at home (usually twice a week, for an hour for us.)

Okay, so long background info, but here is where it may help with the university, they need to accept 504 plans and accommodate the student. I am not sure if they create them though. I would go to the disabilities department, and they must have one, and bring in literature, a drs note explaining the situation, her transcripts and say, what can you do for us for her to receive an education? They must make accommodations and sometimes that is thinking outside the box, hard to do sometimes. Independent study, online course alternatives etc might work. If they don't have an online class, maybe another university does that would meet their syllabus requirements and your daughter can take it and transfer in credits. If it is a state university or publicly funded, there have to be options in place for this.

And as far as how long it will take her--I was healthy and it took WAY TOO LONG to get through school!

I don't believe I have anything helpful to add either, except to say that I'm sorry your daughter has to go through this stuff. I'm 24 and have had RSD since I was 12.

I had some problems with delicate and thin skin as well, leading to some spectacular blisters and infections. The solution we came up with was wearing an AFO (hard leg brace, in case you don't know the term) which kept anything from rubbing against my skin. I'm not sure that would help your daughter, it seems like this problem has become more severe for her than it ever was for me.

I don't know about any new drugs and I've never heard of photon therapy, unfortunately. I hope you find something that works though!

-Betsy

Judysh,

I am so sorry to hear about your daughter. I have a 19 year old daughter myself (& an 18 year old son), and I know how hard that age can be even without the RSD to contend with (well...on their part, since I am the one that has it in our house).

I have had RSD for about 10 years now, and have been through many different treatments and procedures. My RSD started out in my right foot after I stumbled into (and tripped over..lol) a curb while I was on a charity walk for The American Heart Association. It has since spread up my leg, into my lower back (where I have other, unrelated problems going on too), and then jumped to my right hand/wrist/arm/shoulder (that quick! LOL) after mildly spraining my wrist several years later (it has now been several years since that happened....and I am very lucky that my upper body RSD has never been nearly as bad as my lower body....and even with the lower body stuff, I have been lucky in that I have been able to keep it from spreading anymore, and don't have as many horrible problems as lots of folks here do.

My foot/leg was also casted....several times, and for long periods of time.....after I was hurt, and after each of my 4 surgeries. While it is not the best idea to immobilize RSD limbs, there are times that has to happen. The thing to do is to try to do as much of the right kind of PT as possible to get the ROM back. And, that isn't the "regular" Sports Medicine kind....where they believe in "No Pain, No Gain" and force you do go past (WAAAY past) your pain limits and then try to encase you in ice. All that kind of PT does is make things about 100 x's worse.

Has your daughter been able to find a good PT place (usually in a pain clinic..or at least that is where I was lucky to find mine) that will help her with desensitizing and to get some ROM back, and to stop (and possibly reverse) the atrophy? If you don't mind me asking....what treatments has she been through...and what meds does she take? There are some meds out there that work better (for some folks) than others with RSD and it's problems. There are some out there that cause their fair share of additional problems (again, for some people...I keep saying that because with RSD and the things used to treat it, sometimes things work for one person, and not someone else...and some things can even make other folks worse, while being a "miracle" for others), like grogginess, "Brain Fog", mood/emotional changes, and such.

Also...does your daughter's school offer correspondence courses? If it does, maybe she would do better taking a few of them, instead of trying to go to the campus? If that is already what she is trying to do...sorry that I didn't get that when I read your message.

My heart really goes out to her..and you...because I can't imagine what it is like to have your child having to deal with this awful RSD crap. It breaks my heart to hear of all of the kids that have lost great portions of their childhoods because of RSD. I also can't imagine what it does to a child to have doctors accusing them of malingering, and telling them that what they are legitimately going through, coping with, and feeling "is all in their heads". I know what it did to ME to hear that. I know what it did to ME to have my ortho foot doc finally throw his hands up in the air and tell me that "maybe one day I would wake up and realize that I wasn't in pain anymore". 7 years later, and that day still hasn't come! Sheesh.

I hope that the shrink telling your daughter to "go find her happy place" hasn't turned her off from seeing anymore mental health professionals, because I have found that they ARE necessary sometimes in dealing with RSD and the effects that it has on us. ANY doc of ANY type that tells her that what she is feeling isn't really there and is all in her head should be fired ASAP! I want to make it clear that that is what I truly believe. But, there are docs out there that are good, and that can help with the overwhelming depression that DOES and WILL set in because of her having to deal with so much pain on a 24/7 basis. However, if they EVER say that the RSD is CAUSED by depression...RUN don't walk, away from there as fast as possible. It is the other way around...the RSD pain (and other problems) causes our lives to change in not so fun and nice ways...and THAT is what causes the depression; the pain and the loss of "what could have been" or "what used to be" for all of us.

As you have already seen, we have a couple super nice young girls here that know EXACTLY what your daughter has been going through, and what she has to deal with. I hope that helps both you and her in some way. I know that finding other people that were going through and dealing with the same problems that I was, and being able to "talk" with them helped me tremendously. I hope that the same is true for you and your daughter.

Please keep on posting....folks here do try their best to help in whatever ways that they can. This is a super wonderful place, with a super wonderful group of people in it.

Take care...
Jose

Wow Jose, So I'm super nice now?

LOL

Love ya!

Froggsy xxxxxx

PS I went through the skin leak thing. It is mank and horrible. Luckily mine was treated well and so I bear the scars of it and still get ulcers and infections I no longer feel like a patchwork blanket xxxxx

Hello Judysh,
My daughter is just starting the Photon Therapy.. She is going to Monroeville,PA.. She had her first treatment yesterday.. I will keep you informed.. It's to soon to know anything but we go daily next week for more treatment.. My daughter is 15. She is whole body pain/ apasms/contractures.. She went through extensive therapy and pt locally and it made this 100 X's worse but she hasn't had any wounds etc.. She has alot of muscle atrophy in the lower extremities.. God bless you both and I will be praying of the two of you..
Betsygrouphug:

Judy -

Sorry for getting in late on this thread, but there is some important information you should be aware of. If you haven't looked into it, teenagers have the best results of any patients with ketamine infusion therapies, whether the "low dose" 5-7 day inpatient treatments offered in the U.S. or the "high dose" (coma) treatment in Germany, through which people enroll through the Neurology Department of Drexel University School of Medicine in Philadelphia.

For an excellent article written for lay reader on the RSDSA home page, click here: http://www.rsds.org/3/treatment/ketamine.html

For more detailed scientific articles, go to the RSDS Medical Articles Archieve at http://www.rsds.org/2/library/articl...ive/index.html and look under the headings "Children," "Research" and "Treatment." There's lots there and it's free for the taking.

Good luck.

Mike