Hello. I am new here. I have been stalking this forum off and on for months now. I come. I read. Somtimes I leave inspired. Some times I leave in tears. Knowing we are not alone brings happiness and sadness. I am happy to have a community to fall on. But so heartbroken that anyone has to deal with this.... I have a 10 year old daughter who has had CRPS for 8 month, 2 weeks....not that we are coounting. ;-) We have seen othro, pain, PCP, osteopath, accupuncturist, OT, PT... I think that covers it. We now homeschool. She has been on steroids, gabapentin, and pain medication. For the first 10 weeks, she did not sleep. The gabapentin did give her some help with that. However, over time it became clear the side effects were not worth that benefit. Nothing else seems to help. The first PT folks we saw were with a children's hospital. I expected great things. They told her it was all in her head and to stop "burdening" me with the fake pain. So, I lost it on them and we left. The ortho and the accupucturist both told us they could do nothing else for us. Ortho sent us to a surgeon. I cancelled that appointment. Did research and decided that was of no use. Saw a new doctor. He had the audacity to tell her she would live with this forever. So, now she is depressed. Getting OT now. Was getting it 3 times a week. Saw improvement. But insurance will not cover that much. Now down to 1 time a week and that seems to be making it flare back up. Other kids her age don't undertsand, so she is isolated. Pain seems to be getting worse. Cries herslef to sleep at night. We are working on getting in to an inpatient rehab program. (Looking forward to fighting with the insurance on that one. NOT!) Looking into options for CBD oil. Cannot find a safe, monitored place to get it for a child. Anyone have anything to share in this area? Willing to travel within continental US. We are currently in the southeast US. We are a stronger family than we were 8 months ago...but man life is so different. There are things I took for granted.

I myself don't have much info because this is new to me. But I wanted to say I am so sorry your daughter is facing this! It's not easy for an adult! I wish your family the best and hang in there!

Hello and welcome to NeuroTalk. I am SO sorry to hear that your daughter also has RSD, especially at such a young age. Poor child

I have had RSD since I was young also (12 years old). It started in my left leg and then spread to my right arm after an injury. I spent 13 months in a wheelchair after a nerve block caused me to lose all co-ordination. No medications worked for me except oral Ketamine which gives me minimal relief. I have tried intensive PT and it learnt me to walk again but I didn't lose the pain. I am now 20 years old.

Like your daughter, I was also home schooled. My school wasn't disabled friendly and wouldn't let me go even on good pain days as I was a 'health and safety hazard'. It was horrible and a very lonely time, especially when my 'friends' were out and about doing normal things and I couldn't. I really feel for your daughter.

I wanted to say that no matter how hard it is, do not give up hope. I'm by no means cured, I still have severe pain on a daily basis BUT I am in university studying to be a Psychologist. Its hard but thankfully my university lecturers are understanding and let me work from home if i'm ill. Your daughter will get there. I'm not sure where your daughter has RSD but if it affects her hands, one programme that might help her is the Dragon software. It really helped me as you talk to the computer rather than having to type.

Its been proven that the younger you develop RSD, the more chance you have of going into remission so that works in your daughters favour. Tell her to keep up with the PT and moving the affected limb(s) as much as possible. I KNOW it hurts but I was always told 'use it or lose it'. Of course, there is also a fine line between doing too much and doing too little and its hard to find the right balance.

I'm in the UK so not sure what hospitals in the US are best for RSD. I know some do inpatient PT services which may be something to look into. I'm currently waiting to hear back from one in the UK that advices you on how to manage RSD round every day life... it doesn't 'cure' things but can help.

I know RSD affects the whole family and I really admire you for searching to get the best help. My mum was great with that also and without her help and support I wouldn't be where I am now and dread to think how I would have coped. I'm sure your daughter really appreciates everything you are doing for her. Don't forget to look after yourself too though.

If you ever need anyone to talk to who understands what its like having RSD at a young age, feel free to message me. I'm also happy to let you speak to my mum if you like in terms of being a carer.

I hope things look up for your daughter and wish you all the best.

Welcome,

I too am very sorry that your family is going through this. It is tragic and debilitating when something of this magnitude happens to a child. Hard too when there is insufficient compassion from providers. You will find support here and I encourage you to never give up hope.

But I must challenge you on something. You said ortho referred you to surgery and you canceled the appointment? Ortho must have had some reason for making the referral. Is the doctor thinking there is some treatable cause that needs to be addressed? Regardless of the quality of your own research it doesn't substitute for a clinical exam by the right practitioner, possibly a plastics person with nerve training. What did the CRPS result from? If there is any remote chance of finding and treating the problem chase it down! Sometimes nerve entrapment or other problems resemble CRPS or cause CRPS and can potentially be ameliorated.

Please post a little detail if you don't mind. There may yet be some Workup or specialist that may be of utility. Never, never, never give up!

Sending Helaing Love, Littlepaw

BTW, I just read a study yesterday by bigwig Dr. Stanton Hicks that estimate of recovery in children is 97%!!!!! So much for her having it for life....sounds like that one doctor is maybe not the best to encourage and nurture recovery. IMHO....

Here is the article http://ncbi.nlm.nih.gov/pubmed/20704670


Littlepaw

Thank you Jennijojo!

Dear, sweet Ali. I could not make it through your post without sobbing. It was quiet an ugly cry. Thank you for your transparency and openess. It breaks my heart that any child has to deal with this. I am sorry that you had to weather this storm for so long. How or where do you draw your strength to face the pain daily? I do think the isolation and fear is a significant part of the battle for my daughter. So many fears. So few friends. I am not giving up hope. Nor will I let her. I will admit right now is hard. It feels as if I am being deflated. It is so hard to watch one of the true loves of my life hurt so much. I have a great respect for your mom. (Give her a hug for me!) I know what daily heartache she carries for not being able to make it all better. As parents, we are supposed to be able to protect our babies... What I wouldn't give to take this away from her... My daughter has once dreams of playing soccer in the Olympics. Now she dreams of being pain free and "being normal." I keep reminding her there is nothing that we cannot do together. She has a sister that is feeling the change as well. It really does affect the whole family. Please keep in touch. Let me know how your rehab goes. I will tell my daughter about you an your strength and will be praying for you. Thank you again!

Littlepaw, thank you for your reply. I do hope we are one of the ones that goes into remission.

Let me give you a little background information that I inadvertently left out...

The ortho doc was wonderful in catching this early. You see, my daughter had broken her elbow. Infact, her sister rolled off the bed and onto her arm and broke her elbow for her. This was not her first fracture. So, when it happened she knew what it was. As weeks went on, her pain increased. She was in a half cast. She had broken that elbow before. This time was different. She was in constant pain. Then, the pain started in the wrist. After the allotted time in her cast, and the cast came off, she was still in great pain and that was when he uttered the diagnosis. He ordered an MRI. It showed the fracture had not healed and some inflamation. That was it. She tried some meds, the PT, and I repeate dthe MRI to make sure the fracture was healing. It had. She had a clean MRI. The PT offered no relief. They told her what they did. Then, when I called the ortho asking for what to do now, he basically threw his hand in the air. He had only treated one other patient with it and the PT "healed" her. And since that worked for her and it did not work for us, he said he coudl do nothing eske for her. And since it was in her wrist/elbow, he referred her to a hand surgeon. It truly felt like a blow off. Then, I began to read about how surgeries can make the condition spread...and how it does nothing to help.... I did not want to subject her to a "testing" philosophy. No one we have seen since ahs mentioned a surgeon or a hand specialist. So, that is why I cancelled it. I do believe that is the only appointment I have ever cancelled during all of this. Maybe I could go? See what they say? But I am not open to a surgery. Ortho did tell me if it was a tendon issue we would have seen it on the MRI. I am not giving up. I promise to keep chasing.

Any thing else to share or ask? Maybe thos wil help me lead to the road to recovery. Fire away. ;-)

(Side note: her pain is in two very specific spots. One spot is her wrist...right beside the ulna. Other is her elbow. right in the crease all the way around.)

OH, and I almost forgot...for some reason her wrist pops. A lot. And whe it "pops" it hurst worse. Just this week her elbow did too. Since then the pain has been almost unbearable. No one can tell me what it is. No one even has a guess. Thoughts? (And yes, it it a real "pop." I hear it. And it will just happen at random times when she is just moving the joint.)

Good morning,

I suspected you were going to tell me as much on your daughter's story. I was wondering about that ulnar nerve, it is easily compromised due to its position. It is a red flag for me that your daughter's pain is so highly localized. It sure sounds like something is going on in there with the pain and/or popping. I would never advocate for or against surgery. That is a very personal decision. I DO advocate for exhausting the possibilities and getting the absolute best professionals available. I harp quite a bit about nerve injury because of personal experience with one that required a 3.5 hour repair under microsope by a peripheral nerve plastic surgeon. This was after other doctors told me nothing was wrong. That surgery made the difference in my whimpering on the couch all day and now having a life. My CRPS came from another procedure sadly needed later further down on the same foot. I stand firmly, LOL by my ankle nerve repair.

By all means get a consult! But get it with the best person for the job. This may require travel. Most general surgeons are not versed in nerve and may not have the expertise to give a valuable opinion. Nerve injury and or compression is best found by someone trained in peripheral nerve. The scratch collapse test is invaluable and found my injury when it did not show on either MRI or nerve conduction study. The surgeon in the video, Dr, Susan Mackinnon is the chief of plastics reconstruction at Washington University, they have a really incredible program. I think if you called and spoke with her assistant they would be happy to give you names of graduates of their fellowhip program and where those doctors have gone. The two surgeons I consulted with before my procedure trained there.
Nerve conduction study is a good place to start. I did have reduced signal which though still in normal range was an indicator things were not quite right.

Sometimes Physical Medicine and Rehabilitation doctors with extensive training on ultrasound can also find a nerve compression or injury. Even a skilled chiropractor may be of some utility.

Here are some resouces

http://nerve.wustl.edu The program at Washington University in St. Louis. Lots of great info on types of injury and compression. Entrapment does not always mean surgery, sometimes therapy , hydrodissection or injections can address compression, But you have to find it first.

A fascinating article with cute after photo of girl under covers with her cat after surgery to address her CRPS II of many years duration. Kinda throws central sensitization on its head.
http://rsds.org/wp-content/uploads/2015/02/2014-Nerve-resection-Crush-relocation-CRPSII.pdf

This is of the Scratch Collapse Test. This test is able to locate an injury or compression point with great specificity.

Here is Dr. Chopra, a highly regarded CRPS specialist who is conservative and encouraging. The video is two hours long but gives great info on treatment, specifically addresses kids at one point. He also is very adament about ruling out nerve entrapment and specifically mentions casts as a source of nerve scarring.

http://www.youtube.com/watch?v=s3LKhOZ8mAM

To me running down the surgical consult is about peace of mind. I know as a parent you won't rest until you've moved heaven and earth to help your child. Never rely on doctors saying there is nothing else to be done unless you really feel it in your heart. Everyone else may give up way before you do. Be relentless. You don't want nagging doubts and you don't want to find out down the line that there were possibilities and options. Surgery is never ideal but sometimes it makes the difference in gaining the potential to heal. If it comes to that there are precautions that can be taken. I pray you find whatever it is that will bring restoration to your daughter soon! Please feel free to PM me if you need info or hit a wall on finding resources.

Sending extra Healing Love, Littlepaw