CRPS Diagnosis and Concussion
 

Well, three months into the knee pain, my 11 year old got a diagnosis of CRPS today. At one point, after MRI indicated a torn meniscus, there was a surgery that discovered that the meniscus was just fine. Of course, CRPS is new to us, but when we started looking at symptoms, it's a spot on match to what she is experiencing.

I found this forum only to realize that I had posted in NeuroTalk last February after the same daughter suffered a terrible concussion and lost almost all (well over 99%) of her memory of her life up to that point.

We know of no specific event that brought on the CRPS, but I do wonder if it could somehow be connected to that concussion ... there was about nine months between the concussion and the knee pain. And, aside from the memory never coming back and some minor headaches, she's had no lasting issues with the concussion (remains a very happy kid and a very good student).

Any information? Thanks!

Hello Tom,

I am so sorry for what your family and daughter are going through. It must be especially hard to deal with a CRPS diagnosis from a parent's perspective. We do have some other parents here in the group but I know all of us will want to jump in and help.

Know first of all that there is hope. 80% of people improve over time according to CRPS bigwig Dr. Michael Stanton-Hicks of Cleveland Clinic. Early identification and treatment lead to better outcomes so you're doing well in that regard. Gentle, consistent movement and use of the limb is vitally important. Whatever can be done to improve strength and range of motion without causing flare up of pain will help.

Many of us have found the following video from Dr. Pradeep Chopra helpful. He is compassionate and non-doomsday. The video is 2 hours long and has specific tips on treatments and therapy with a segment on pediatric patients.

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

CRPS can be triggered by surgery alone and quite a few of us have landed here that way. I have not seen any literature on concussion myself but with this illness, who knows? I personally think the most important focus should be on comfort and movement with weightbearing if she can tolerate and is medically cleared for it. Pool therapy is great and fun for kids, so that's definitely something to explore. After any surgery, nerve entrapment is an important consideration and the most important rule-out. If you need a second opinion or follow up imaging push to get it. Incidents do happen even with perfect and "minimally invasive" procedures.

Please let us know how she's doing and come for sharing and support. You are not alone. It sounds like you have a strong, bright girl with a great attitude. Those traits will take her far.

Sending thoughts of healing and comfort, :hug:

Tom,

Please don't be discouraged, children recover from RSD.

Take notes when you watch the Chopra video. He promotes low dose naltrexone, which is what helped me. I believe I would not be walking today if not for LDN.

Get your child into a pool-Aqua therapy and mirror therapy are highly recommended.

Tom,

It sounds awful that your daughter, you and the rest of your family have to go through this. As the others mentioned, she has her youth on her side. Children have the greatest chance of remission. The Chopra video is quite informative, so I would give my recommendation on that as well.

There are cases of CRPS showing up without a preceding event. I can not say for certain if this is the case with your daughter but it can not be ruled out. There could have been additional trauma that went unnoticed at the time of her concussion last February. I am sure that the knee surgery did not help as surgery has CRPS to increase in intensity following further traumatic events that includes surgery.

We are here for you if you should need someone to talk to. We are a friendly group and are more than happy to offer our advice, thoughts, knowledge, and most of all, support for each other.

Healing thoughts and hugs for you and your daughter :hug:

I just want to echo some of the things already posted by our amazing members!

First, kids are tough. It is amazing to see what they can take and how quickly they can bounce back. I'm sure you are already aware of this when she had her concussion.

One of the more frustrating things about CRPS is how little we actually know about it. We know more now than we did even 5 years ago but it is still a mystery in so may ways. I have found some of the best resources here on this site!


I do not have children but I am imagine how difficult it is to watch your child deal with this. Luckily there are parents here who have experienced what you are going through. Please let us know if there is anything we can do!

My 14 year old daughter has recently got a crps diagnosis. There was no accident or trauma to trigger it and it started in August last year in just her toes, pain continued and currently effects whole foot and ankle. She has had periods of time when it doesnt flare up n then all of a sudden it can start and she can be cryin her eyes out in agony this last flate up has been the worse and has continued for almost four weeks now. She has been admitted to hospital twice and the second time was for a week and she got home Last night. She is on LOADS of medication and is struggling with the condition as its effecting everything. She has a chemical bone scan due on 3rd march and has physio and we are waitin for a referal to London hospital about chronic pain management. Im fonding IT extremly hard from a parental point of view and i joined this group in yhe hope that i may find other parents in the same boat xx

I was diagnosed with crps at 11 just like your daughter. I started getting treatment about 3-4 months after the symptoms started. I was in "remission", I guess the word is for about 6 years with having maybe 5-6 flare ups threw out. If she gets treated soon for it she will probably be lucky enough for it to lessen. But do becare to make sure she doesn't injure herself too much. I was a very clutsy child and still, which causes flare ups and also makes its spread. As long as she is careful she should be able to live a semi normal life. Good luck to you and your daughter. If you ever want to talk to some one who has lived with it since I was your daughters age, I'm always here.

Nes123,

There are quite few other parents that are active on this forum with children around your daughters age. There are also others like Blazed-kitty who have been dealing with this since her younger years, like she said. Try to find a program that is familiar with treating CRPS in children. Youth is on your daughter's side. Children have the best chance of remission. As long as she remains careful, it may remain in remission for quite some time. It might take some time for some of the other parents to share their experiences. Until then, feel free to ask many of the wonderful members here any questions you may have or for some support, resources and information.

I would strongly recommend reading through a few of the "stickies" at the top of the RSD/CRPS board to familiarize yourself with treatments, resources, success stories, lifesavers and so on, if you have not done so already. There is a wealth of information and stories that many others have been kind enough to share with the rest of us.

Hello Nes123 and Welcome to Neurotalk Support Groups, :Wave-Hello:

I am so sorry to hear about your daughter. It is terrible as a parent to watch your child suffer, knowing that you would take anything yourself for them to be able to avoid it.

You will find a friendly and supportive group here. Even if you do not hear from many parents, feel free to ask the group for info and support. We are here for you.

You and your daughter have had a lot of stress with those hospitalizations. I hope she got compassionate care and is settling well back at home. I assume they did everything necessary for workup of a cause for this? There are cases of spontaneous CRPS but if they are able to find and treat any pain contributors to her condition that will help.

Hold on to hope, improvement and healing are the norm. Recovery can be very slow and usually comes at a gradual pace. Physical therapy is a huge plus, just make sure they "start low, go slow". Using the limb as much as possible while avoiding pain flare is key. This is often not a condition to "push" through.

I hope you get the referrals your daughter needs quickly. May comfort and healing find their way to your daughter and family soon, :hug:


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Nes 123, I'm in the "digging for information" phase right now. So much learning! And, in the process, I'm learning how horrible this is for some people. Our daughter's pain appears to be different. Constant, but not as extreme as your daughter's. She's really pretty much her same chipper self with a very noticeable limp and discomfort, some inability to make the knee do what she wants it to do, definitely temperature changes in leg, and pretty noticeable muscle loss. Sensitivity to touch, but not extreme at all. With the new diagnosis comes a whole different approach to PT, so we'll see what this brings as far as improvement.