Newbie dealing with son (9yrs) just diagnosed with rsd.
 

Hi everyone, my name is cara. My son's right foot pain (since may) had what brought me here. We've been on a long road of trying to figure out why he's having pain everyday. It started out in May of taking Tylenol 2 or 3 times a day. Then saw his doctor who referred us to a podiatrist who said he just had some blood blisters underneath one of his tendons. Told us to ice his foot three times a day Advil three times a day for two weeks and wear a wrap. After that didn't work he still having pain everyday still have to give him advil at least once or twice a day his doctor referred us to having xrays. Nothing came up abnormal. Then he sent us to Children's Medical to see a sports medicine doctor. She has helped us more than the rest of them have. She diagnosed him with Seevers disease. he's gone through three or four months of physical therapy which really hasn't helped too much. She also told him to do the advil and ice for one week 3 times a day. After not think too much of an improvement with that we did a recheck and then she wanted to send him to an MRI she believed he has an accessory navicular bone. Which the test showed that he did however it's not really causing the problem none of the muscles or tendons are inflamed are having issues with the bone yet. So then now she has diagnosed him with complex regional pain syndrome or rsd. And she has referred us to a neurological doctor within the hospital for pain management. Needless to say with all this going on trying to deal with his father and the family we are currently divorced so it makes things complicated. And dealing with the teachers and the gym teacher and his homework which he's behind in its just been a really rough road. But she's in her late twenties and I know it's different for the age group slightly. I just wanted to come here to have some other mothers and families who have been dealing with the same situations or similar to try to get some help and a piece of mind. And possibly some new outlooks on things that they have gone through.

Hello Caraleigh
Sorry to hear of what your son is going through.

Here is the link to our RSD forum http://neurotalk.psychcentral.com/forum21.html

Dearest Caraleigh,

My warmest welcome and most heartfelt sympathies go out to you. I am so sorry you had to come join us. It is heartbreaking when a child must suffer so. You will find good support here and many caring, understanding individuals. We have an active group on the RSD/CRPS forum, including some young patients and parents.

Hold on to hope. Dr. Michael Stanton-Hicks, a CRPS bigwig at Cleveland Clinic states 80% of people improve over time. Studies indicate Children have a higher rate of remission than adults. This disease is a monster but it is not the death sentence some places on the internet would have you believe. You will have to be careful of where you get info.

BTW, Do they have an idea what caused this? It does sometimes arise without injury but it is less common. It sounds like he is getting adequate workup and that is positive. CRPS is a diagnosis of exclusion and all treatment possibilities should be exhausted. FYI, ice is not recommended with CRPS though I personally have found cool packs helpful. I either use gel packs from the fridge NOT freezer or frozen peas which aren't really that cold with a barrier.

Many of us recommend the following video by Dr. Pradeep Chopra. It is two hours of info and treatment dos and don'ts from a highly regarded, compassionate specialist. I believe he dedicates some time on it to pediatrics. "CRPS Diagnosis and Management."

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

Please come see us and let us know how your son is doing. Progress takes time and often comes slower than anyone wants but it DOES come. Be kind to yourself and know that we are rooting for your family.
You are in my thoughts and prayers. :hug:

Great to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Thank you all, sorry for the delay been caught up with his care and Daily life. Nothing difinitive that they believe caused it. At the very least I remember in may he slightly rolled his ankle in gym but that's it. He's been out of school now for a week and 3 days. And I have him signed up for intermittent home instruction. On Friday he goes in for a full body bone scan. To clarify the diagnosis. I'm just hoping they find something. All roads have been a dead end it seems lately. And I have also found a counciling center to try. I'm hoping it will bring comfort for us. They have him on prednisone and neurontin. Which had shown side effects. ..so now just taking prednisone till its finished and then start neurontin back up to see if it might help. I'm besides myself. Thank you for that link, I will be going to check that out next.