Info needed my 14yr old has CRPS
 

Hello and thanks for reading this. I have a wonderful 14 yr old daughter that keeps on having these strange spells of pain that regular doctors had been saying was some type of pleuracy. Finally this last time they decided that she had, had this type of pain too many times and sent us to a Rheumatologist. Just yesterday they told us that she has CRPS. This is the first time that she has ever experienced swelling in her shoulder blades and colar bone area. The pain was so severe last spring that she even passed out. When she is not having a spell she plays both volley ball and basketball. However it is now basketball season and she has missed her first three games and has even missed three weeks of school. She has finally been able to go back to school; today was her first full day back. She has been in physical therapy for two weeks now. When we went to the therapist today I explained to them that I thought her swelling was coming back and she looked at it an agreed. In the past this pain has been something that would come and last about a week and then go away. It has been over three weeks and she still has swelling and even driving over a speed bump hurts her. Can someone please explain this thing called CRPS to me I only know that because of this horrible condition I can't hug my daughter and make everything ok

Hello Cassmom!
Welcome, and so sorry to hear of your daughter's pain!

There are some other Mom's here, and a young lady near your daughter's age, who I'm sure will be here.

You didn't mention any injury that may have caused this with your daughter? Was there one? Any trauma at all?

I suggest this website a lot,
www.rsdsa.org
RSD, (Reflex Sympathetic Dystrophy) is an older name for CRPS.
There is a doctor finder there, and volumes of information.

Personally, I'd highly suggest that you find a neurologist who's familiar with this disorder!
(Try a University hospital setting, and try to get the chief of Neurology).

Also, what you describe, I would have her to a hand specialist (surgeon) to rule out Thoracic Outlet Syndrome (TOS). (Usually, in a hospital setting, the neurologist will have/know a good Hand surgeon.
There's another section on this board for folks with that. I'm one of them,
I've had both RSD/TOS for 26 years now. Younger patients who get treatment early, do the best by far.
http://neurotalk.psychcentral.com/forum24.html

I'm NOT a doctor, just suggestions from my experience.

I wish your daughter, and yourself and family the best!

I'll offer my prayers for your daughter!

Pete

asb

The only injury that we know happened was when she was born she was stuck in the birth canal and they had to pull her shoulders out of socket they tore so much having to do this that at first they told me she might not be able to use her arms. The flare ups always start at her rib cage and now work there way up to the shoulder. However she has been able to and has even been very active in sports except for when she has flare ups. We are currently seeing a doctor at Vanderbilt in Tn. Do most people with CRPS have flare ups that come and go? html[/url]

I'm NOT a doctor, just suggestions from my experience.

I wish your daughter, and yourself and family the best!

I'll offer my prayers for your daughter!

Pete

asb[/QUOTE]

Welcome to NeuroTalk Cassmom! :Wave-Hello: You've come to the right place. I'm so sorry your dear daughter is in so much pain. :hug: There are wonderful people here to offer ideas and advice to help your daughter. I hope things will improve for her soon.

Welcome, Cassmom. I believe you will get a lot of good "real-life" information here. We are all speaking from personal experience.

Yes, it is very common to get flare-ups where the symptoms are at their absolute worst. Likewise, many people find they have periods of time where the symptoms are quite mild. This can sometimes be frustrating. When I begin my day, I never know how I will be feeling by the afternoon. A flare-up can come on extremely suddenly. I might feel good enough to be doing something physical one minute, and the next can hardly stand (my RSD is mostly in the foot/leg.)

I hope your daughter is reading through the posts here as well. (Hi, Cass :cool:) The more she reads she will realize that she is not alone or some type of freak. This can also be a place for any of us to get on and RANT when we are having a bad day. We are willing to listen, to have an electronic shoulder to lean on.

Best to you both,

Mike

It's time to do some research. Really. It's best to read up on it right now. The following information will cover way more than we could ever explain on this forum. Please look at these sites:

http://www.rsds.org
http://www.rsdhope.org
http://www.forgrace.org
http://www.rsdrx.com/rsdpuz4.0/001.htm

[/QUOTE]



Cassmom,

She may be "growing" into that birth injury.
TOS, is often associated with RSD/CRPS, and it's all got to do with the shoulders, arms, hands, ribs and upper musculature.(TOS) From what you're saying, I would really suspect the TOS first.

I have more questions about her pain?
1)Does it radiate up her neck, perhaps headaches, after exertion? Down her arms, weakness in her arms, fingers.? Tingling in the fingers?

2)Does she have deep, deep burning pain, like in the bones?
Skin feel cold, or hot?

The first set of questions would indicate TOS.
The 2nd, more like RSD/CRPS.

Here's a quick layman's test for TOS.
(Easier than it sounds)

Have your daughter stand in front of you, facing you in a well lighted room.
Have her raise her hands in like the "Stick em up" manner.
Arms @ a 90 degree to her body, then bent at the elbow, hands straight up in the air.
Now, have her 'push' her elbows rearward as far as possible, while slightly raising her hands. This might cause a "burn" in her shoulder blades, but it's only gonna take a minute or so.
What you're watching for is her pulse. @ her wrists.
Do her hands change color?
Pink to white?

If she loses her pulse and/or her hands turn white, that's a good indication that she's got TOS.
Most every knowledgeable Neuro and Hand / Arm / Shoulder surgeon will do this test.

Also, notice her at rest.
Does she normally "rotate her shoulders inward while sitting", (Shoulders forward) and drop her hands in to her lap, centrally? Does she like a pillow under her arms? For support?

If you want to PM me, I'd be happy to try to help more.

Pete
asb

My wife has RSD and or CRPS and can only draw from what I've witnessed. If it where me I'd research this disease and keep your eye on other conditions as well. Most of the time an injury is what sets this disease in motion but not all the time. Usually it is most prevalent in a limb and then spread to other limbs, but again not all the time. It can spread to organs, orally etc.
My wife broke her wrist and overtime the disease has spread to her limbs mostly. Sometimes she will complain about neck and lower back RSD pain.

What sets your daughter apart in my mind is other than a complicated birth she appears to not have had an injury, not to say that a very young infant can not get CRPS from very very early in life or that even an injury is even required.
The other thought is it sounds as thou your daughter has had spells of pain and swelling and then both pain and swelling totally disappear, many times over? How long ago did this start? How long does the pain last and does it infact leave altogether, no residual pain at all left until the next episode?

Hi Cassmom,

My name is Sandy and I also have a 16 year old daughter with RSD/CRPS, finally diagnosed in December 2008, but sick for 6 years. I'm sorry I wish that I could tell you that this is going to be easy, but, it isn't. Like I tell every other parent on this board the first thing you need to do in school is to get her a 504 Plan, or even better an IEP for other health impaired. Protect her immediately. DO NOT WAIT! She will miss a lot of school. If she is in Honors classes or AP classes there are laws that protect her under IDEA and 504. Get that protection right away...That will be the first advice that I will give you while she is in the beginning stages. If you would like me to post web sites for you I can. This will get overwhelming. Just remember you are her advocate right now, take the great advice from these wonderful people, they know what they are talking about. And they are also a great support group for us mommies. I don't know what I would have done without these caring people. My daughter did two three week Pain Rehabilitation programs. She has also undergone Ketamine Infusions, which have so far been successful. God willing they will continue to work. See about getting her someone to talk to, keep an eye on her and make sure that there is no depression. They tend to start losing friends. Keep a watchful eye and tell her everything is going to be alright.

Keep praying, keep your faith because it will be tested, I will pray for you that God will give you the strength that you will need to conquer this dreadful disease. I haven't been able to hug my daughter for many years, my heart breaks for you. As Loretta always says soft hugs to you.

:hug:

SandyS

wow you pretty much just described everthing about her. I am going to do that test on her

Cassmom,

She may be "growing" into that birth injury.
TOS, is often associated with RSD/CRPS, and it's all got to do with the shoulders, arms, hands, ribs and upper musculature.(TOS) From what you're saying, I would really suspect the TOS first.

I have more questions about her pain?
1)Does it radiate up her neck, perhaps headaches, after exertion? Down her arms, weakness in her arms, fingers.? Tingling in the fingers?

2)Does she have deep, deep burning pain, like in the bones?
Skin feel cold, or hot?

The first set of questions would indicate TOS.
The 2nd, more like RSD/CRPS.

Here's a quick layman's test for TOS.
(Easier than it sounds)

Have your daughter stand in front of you, facing you in a well lighted room.
Have her raise her hands in like the "Stick em up" manner.
Arms @ a 90 degree to her body, then bent at the elbow, hands straight up in the air.
Now, have her 'push' her elbows rearward as far as possible, while slightly raising her hands. This might cause a "burn" in her shoulder blades, but it's only gonna take a minute or so.
What you're watching for is her pulse. @ her wrists.
Do her hands change color?
Pink to white?

If she loses her pulse and/or her hands turn white, that's a good indication that she's got TOS.
Most every knowledgeable Neuro and Hand / Arm / Shoulder surgeon will do this test.

Also, notice her at rest.
Does she normally "rotate her shoulders inward while sitting", (Shoulders forward) and drop her hands in to her lap, centrally? Does she like a pillow under her arms? For support?

If you want to PM me, I'd be happy to try to help more.

Pete
asb[/QUOTE]

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

[/QUOTE]

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... :hug:

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!:hug: 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

I'd definitley get her to join the site if she can. I remember when I was first diagnosed with RSD, I had my mum post everything for me because I didn't want to talk to anyone and was in denial about my RSD I guess but it really helped when I finally opened up and started posting. My mum still posts sometimes but if I have any questions, I normally post them myself now that I feel comfortable. I'm not sure what i'd do without everyone here - they've all helped me so much and it's so nice being able to talk to someone who truly understands what i'm going through.

I'm glad your daughter is having PT. I know how painful it is. I went through 2 intense PT programs and spent hours crying because of it. The PTs told my mum to go out of the room because if she saw how much pain I was in, she'd probably want to take me home but that it was probably the best thing for me. I'm glad I stuck it out because without it, I wouldn't be walking now but it was absolute h*ll! Just remember to listen to your daughters limits and if she doesn't feel able to do something, don't force her too much - weve learnt that theres a fine line between doing too much and doing too little.

Best wishes to you both! Know that i'm here if you ever want to talk!

I'm 17 and I have had RSD/ CRPS for 3 and a half years now. I suggust getting your daughter on this site and letting her talk to US. Me for one becuase are close in age and I got my RSD at the same age as her.

Hi,

You spoke with my mom in California I believe last week and we were considering ketamine invusions. I went through my second infusion yesterday and feel better. It is raining over here and my arm is still extremely sensitive to the cold but it does feel alot better for the most part. the burning has calmed down alot. Thank God and my parents for allowing me to do this. does your daughter talk to anyone that has rsd her age, i know i am 4 years older than her.. but feel free to give her my email.... if she would like to talk. i have my 3rd infusion next week.

Hi Cassmom, and welcome to you and your daughter. I am so sorry it is under these circumstances. I'm the Mom who got RSD 15 years ago when my daughter was 15. I wasn't diagnosed for 4 years. My daughter took me to pt for a year and I went into remission. My RSD came following surgery. I had remission twice for at least a year because of physical therapy. It was very painful. I went to a massage therapist before each physical therapy. Even though I had to pay for it, I believe it helped me in pt and also helped with desensitization. I don't have touch sensitivity like so many have, because of massage therapy. I still find massage therapy very helpful. When I was diagnosed full body RSD, I was recommended to a psychiatrist. I have found counselors are not all compatible, but I found one on my own that is a jewel.
I believe I am mobile and better because of my new Dr. and his knowledge. He is not only a psychiatrist, but a neurologist, and a pharmacologist. He does studies for pharmaceutical companies. Having someone at a time I was going thru grieving process was so important to me and helpful. Also having someone to get me on the right meds was wonderful. At one time, my toes were turning upward, off the floor. He had me exercising dailey in the pool and in 4 months my toes were touching the floor again. I went thru involuntary electrical shocks, jerks, and spasms and the right meds totally stopped those dailey spells. Then I gradually went off of them and the shocks, jerks didn't come back. It was a ortho hand surgeon for sports injury group in a different state that diagnosed me, within a minute of seeing my hand and following up with nuclear med test for verification.
Something that has helped me with my feelings and emotional pain is journaling. You might buy your daughter a journal and encourage her to write her feelings down and her privacy will be respected. I saw a therapist for 2 plus years when my parents died. I was 25 when my Mom died and 31 when my dad died.
I didn't let my daughter see me in pt, as it was torture.
It's good you checked 'us' out before telling your daughter. There are wonderful compassionate people on this site. Please give your daughter soft hugs, :grouphug: loretta
Please take care of 'yourself' I know this is very difficult for you seeing your daughter in such pain.

Hi Hannah,

I am so glad to hear that you are getting the Ketamine Infusions and there is some relief. Lindsay had the three infusions over three consecutive days. She is doing well, has a virus right now, she still has pain in the original ankle that has the RSD. But, her arms and hands no longer have the pain or sensitivity. Let me know how you are doing, send your email to my PM and I will give it to Lindsay. Feel better sweetie and if your mom needs to talk PM me and I will give her a call.

Much love to you,
Sandy

Hello,
My daughter has rsd also. It is very tough as a mom to watch them go through this. If you would like to talk at all i will call you whenever would be good for you. PM me anytime and we could talk or if you need anything else. As moms it helps to communicate with each other. :grouphug: