[Caraleigh]

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.
Above was a older post but this is our current situation. ( 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. Has anyone gone though this kind of situation?* How did you cope as a parent. How do you keep your spirits up and your child's. I have my own business and it's sliding away due to the responsibilities of care. (Well and money) thanks everyone for taking the time to read this!

[Jomar]

Have you stopped the ice, now that RSD/CRPS is the diagnosis?

If it gets very difficult for him actually going to school, there are now online schools that are free just like public schools.

http://distancelearn.about.com/od/on...a/OnlinePS.htm
http://www.k12.com/
http://www.connectionsacademy.com/

[Caraleigh]

Yes we stopped the ice. Heat seems to comfort time to time. And he uses lidoderm patches sometimes they help and sometimes not. And he's still on advil :/

[PurpleFoot721]

Hi Cara,

It makes me so sad every time I read that someone so young has had to deal with this. There are a few members here that are unfortunate to have to have their child end up with crps. Your son does have youth on his side, (9, that is too young to have to deal with this), so he has a great chance still at putting this into remission if treated properly. It is good that you are getting him to multiple doctors in different fields that may have a some knowledge of helping. Pain management and neurologists are quite often the ones who know the most about crps but don't be surprised if they are not very knowledgeable about it. This is a great group here and as I said before, some with children that I hope will give some more information as to how their children were treated and what has worked for them. Healing hugs to both you and your son.

[Caraleigh]

Thank you Alaina

[mama mac]

Cara,

I just wanted to say hello and welcome. I do not have a child with CRPS but as Aliana said there are a few mothers on the board that do. Hopefully, one of them will see the post soon and chime in. It sounds like you are doing so many of the right things for your son. This is a frustrating disease to get diagnosed and find appropriate treatment for. I hope the bone scan will provide some answers or at least rule some things out. You are also wise to look into some counseling for both of you. It's also a hard disease to get your head around. As mentioned above, research shows children with this illness have a excellent chance of remission. I hope relief will come soon for both of you. All the best.~mama mac

[LIT LOVE]

if you have access to a warm pool get him swimming asap. I've become a big fan of Morton's Epsom Salt lotion to reduce swelling. I find Lidoderm patches work better if they're used less frequently--when I used them daily they lost their effectiveness for me.

[daylilyfan]

The bone scan can show positive for RSD. But... Please be aware that it can be negative and your child could still have RSD. Bone scans are not definitive. I had a negative one early on, and it kept me from getting proper treatment for a long time.

You can look up triple phase bone scans and CRPS RSD studies online for more info on their usefulness in diagnosis.

Excellent for your son that this was diagnosed so soon, if it is indeed RSD, and also that he is young... Young people have a much better chance of remission.

[Caraleigh]

Originally Posted by mama mac

Cara,

I just wanted to say hello and welcome. I do not have a child with CRPS but as Aliana said there are a few mothers on the board that do. Hopefully, one of them will see the post soon and chime in. It sounds like you are doing so many of the right things for your son. This is a frustrating disease to get diagnosed and find appropriate treatment for. I hope the bone scan will provide some answers or at least rule some things out. You are also wise to look into some counseling for both of you. It's also a hard disease to get your head around. As mentioned above, research shows children with this illness have a excellent chance of remission. I hope relief will come soon for both of you. All the best.~mama mac

Thank you mama mac, yes the doc told us it's just phase one of testing. I just hope we find something tomorrow so we don't have to do more testing. I'd like to start treating in stead of masking.

[Caraleigh]

Originally Posted by LIT LOVE

if you have access to a warm pool get him swimming asap. I've become a big fan of Morton's Epsom Salt lotion to reduce swelling. I find Lidoderm patches work better if they're used less frequently--when I used them daily they lost their effectiveness for me.

Thankyou so much for the advise. I'll look around and see what I can find. We too only use the patches when needed. Lately he's been choosing the moist heating pad.