I think she has CRPS
 

My name is Julie , My 16 year old daughter Laken has always been healthy until this last 6 months. Laken was on top of a pyramid in cheer and she fell . she landed on her tailbone. After a trip to the ER we were told it was just badly bruised. After a few weeks she was back to normal and back to cheer. She told me that she noticed when she took her shoes off after practice and PE class her feet where purple but no pain. I called our primary and he said just keep a eye on it. after 2 months of this happening she started being woke in the night to very bad muscle cramps in her calf. one night it would not go away. after a trip to our DR he said we needed to run some test now that she is in pain. she had a MRI, MRA, CT of Head. so many blood test. where sent to many specialist as her pain kept spreading. after 6 months of DR's and test we still don't have any answers. We were told it could be a autoimmune disorder . I have researched so many and keep coming back to CRPS. We are now waiting on more blood work and 3 more specialist. but while we wait my daughter gets worse. her symptoms are now
Sever lower back pain, no feeling in toes , feet are ice cold most the time, feet and lower half of legs become mottled and deep purple while standing or sitting over 10 mins. tingling in back of head followed by bad headache ,shoulder pain, ankle pain, heart palpations, if legs get cold they hurt to the touch. nausea, She walks so slow and is in constant pain. No longer can attend school or do anything a 16 year should be able to do. I sure hope someone can give us an idea of what they think, Im so afraid of loosing my daughter and the DR's just cant find out what this is...

Hi, so sorry you have had to come here with such a horrible experience.

I am no doc, but from my own experience I would say that the symptoms you are describing sound very much like CRPS. However, the docs are trying to exclude other explanations, and that does take time - time you just don't have when your child is in so much pain.

She needs to see a pain management specialist as soon as possible, so that she can be diagnosed (whatever it is) and treated quickly - the early months are crucial. In the meantime ask her primary care doc to consider starting her on some form of nerve pain med like Gabapentin, amitriptyline or Lyrica. If it helps then that's diagnostic for them as well. You could take in the Wiki page on CRPS for them to read, and ask their opinion. Ask too for something like a pain relieving patch (lidocaine etc) which might help. CRPS pain is no joke, and many ordinary painkillers just don't work - things like tramadol etc might. You might need to push hard to get something unfortunately :rolleyes:

Try to get some unperfumed Epsom salts (chemists, health shops, online) and use a few tablespoons in a warm bath. A lot of us use them to help with the pain, they work by blocking calcium channel receptors (something like that, sorry if science slightly ropey!). If she can't tolerate a bath then try wrapping some in a damp cloth and placing it gently on any burning areas.

IF it is CRPS then it's important to keep things moving - CRPS thrives on non-use, so even though it hurts she needs to gently move as much as much as she can bear. Heat packs might help, but make sure she has something soft between her skin and the pack, and keep an eye on the skin, don't leave it on too long.

Vitamin C 500mg twice a day is a good idea, it has been shown to reduce the risk of spread and many of us take it preventatively.

Relaxation is a big thing too - her body will be completely braced against the pain, and the stress is very bad for you. It's hard, but try soft lighting, calm music, nice smells, and meditation too (tracks on iTunes) - I went from skeptic to believer myself :winky: but it really helps with the pain. I didn't realise how tense my body was until I consciously relaxed. You might find it helpful too - it must be awful to watch your child go through this and not be able to help.

Please tell her that there is hope, and help out there, and wish her well from me. I send her a big gentle cyber hug :hug: and please do let us know how she gets on. She's lucky to have such a supportive mum.

Bram.

You're a good mom to be researching for her.
The symptoms you describe sound very much like RSD/CRPS. But just like Ms. Bram just said it's important for it to be correctly diagnosed and if it is RSD/CRPS the sooner it's treated the better, especially since she's young it's more likey to have remission if it's caught early. "Early" is a loose term and I'm not sure if there's an exact defination for that.
A few things are a given. Same as Bram said: The vitamin C, soft warmth, NEVER ICE, avoid cold, slow gentle movement. Movement is ok if it's uncomfortable just not severly painful.
Try to not allow them to do anything invasive or traumitic near the sites of pain until you know for sure what this is.

Some sort of nerve medicine is good too.
Please find her a good pain management Dr. or Neurologist who is familiar with RSD.
It's very good to stay proactive with this. Wishing the best care for her!

Thanks AZ-Di - cant believe I forgot the most important thing of all - NO ICE!!!!

:winky:

My niece blew her knee out doing cheer stunting... still bothers her after surgery..

Did you find an online school for daughter, so she doesn't get behind ?

There might be one in your state that is free, just like the local school.
http://distancelearn.about.com/od/on...a/OnlinePS.htm

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(In the us) You can apply to the school for an individualized education plan, and if your daughter is determined to have a disability* then she is entitled to a free appropriate education, which may include tutoring in your home if she is unable to attend school. My daughter was tutored at home for almost a whole year, although the tutoring was only two hours a day.

They need to provide an appropriate education until she is 21 years old or until she graduates from high school, whichever is first. If you haven't already, you should apply as soon as you can, because 1) it takes some time to get an iep in place and 2) if she is old enough and hasn't attended school the might consider her a drop out and say no.

I am not an education expert, but this is just based on my experience with my daughter and things I've heard from others. Luckily my school district has been great, but we have friends who needed to hire an education lawyer to get appropriate accommodations for their son.

*i know may seem obvious that she is needs accommodation, but the education rules are bizarre in my opinion, and even the most obvious disability might not qualify if it is not on their list, so I don't know that chronic pain is on of the disabilities that entitles children to accommodation.

I'm not a dr but it sounds like she has symptoms similar to those of RSD. Maybe check with you neurologist to see what she thinks. There are also universities that study RSD. Maybe check with them too to see what they think. I hope your daughter feels better soon. I will be praying for her.

Since it started with the tail bone injury maybe our Spinal forum might have some info...
http://neurotalk.psychcentral.com/forum22.html

You might look up" dura matter" , I found info about it when I was searching or other therapies and such.

Ditto to all the above esp. no ice. I have had several Grand dauhters that were / are Cheerleaders and it makes me cringe to see what they do. Blown out knees, torn ACLs . Falls etc. I cannot watch this anymore it is so upsetting. Will keep all of you in my thoughts and prayers. Carol

Lakern's mom, where are you in IL? I ask because when I got my RSD, I was living in Michigan. I had an older neighbor who had a high school aged granddaughter with RSD in her legs from a tennis injury. This young girl was seeing specialists at one of the Universities in Chicago. This was ten years ago, but there were cutting edge doctors there that made huge differences in the pain, quality of life and mobility of Marge's granddaughter, even back then. It sounds like you already have Laken seeing a lot physicians. Unfortunately because RSD is not easy to diagnose, a lot of other things usually need to be ruled out first, which unfortunately takes time. It is the juvenile that stands a much greater possibility of remission with RSD, but is she seeing doctors who are familiar with RSD? That usually makes a big difference in treatment and diagnosis. There are lots of dos and don'ts to follow, the most important ones have been already mentioned above, but it is important that Laken not cease moving if possible, should this be RSD.

If you have not already found RSDS.org, Jim Broatch, the director, can help you find doctors and help in your area. Between that site and RSDhope.org are fantastic sites for information of all kinds. Actually both sites can give you personal help with finding resources if you email them. This site is the best one I have found for connecting with others with RSD, but there are FaceBook pages geared towards juveniles and teens that might be helpful for Laken, if she wants to connect with other kids going through the same thing.

I can't even imagine how difficult this must be for parents wit children suffering from this disease. It's pretty horrible for adults. I can not even imagine a child having to deal with the level of pain we go through, everyday. That has to be so difficult to come to terms with as a mother. I hope you have great success in getting a diagnosis and finding good doctors, physical therapists, etc.
My heart goes out to you both, soft hugs, Sylvia