[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 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.

Thankyou for your input! Yes his doctor said it could come up neg. He said that just means we go to phase 2 testing. I'm just hoping to not go through all the testing and find some kind of answer so we can start treating. Trying to keep our heads up. It's hard sometimes though.

[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.

[RSD ME]

hi cara. i am so sorry your son has rsd. i am sending soft hugs and heartfelt prayers to you both. i have had rsd for almost five years and just try to deal with it one day at a time. having a good pain management dr who is knowledgeable with rsd helps alot too. take care.

[swimtime]

I'm so sorry you're facing this. My 14 year old son was diagnosed a year ago. He was in extreme pain daily, nightly. It takes a toll on the whole family. Research all you can about his diagnosis. The more you know, the better you can advocate for him and identify the best doctors. http://www.ncbi.nlm.nih.gov/pubmed/ Lots of reliable medical research here.

He made huge improvements over the months. Just keep him moving as he can tolerate it. Play therapy is really important given the age. If you find a physical therapist who works exclusively with children, fantastic. Children's hospitals are a good source of pediatric therapists. Also, check with your school. He may very well qualify for school-provided pediatric physical therapy. We have one from the school that comes to the house, and she's fantastic.

Pool therapy is your best place to start if he has too much pain to do land therapy. If you can find a pt place that has a pool, great. If not, find a local public pool with warmer water (YMCA, gym, etc.)

Things are so much better than they were! A child in pain is a wound to a mom's heart. Hang in there. You're his best advocate, cheerleader, and inspiration to keep going. Keep feeding him hope and encouragement, even when you're filled with fear or dread. Nobody fights for their child like a mama bear. Hugs to you!

[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.

[Littlepaw]

Hi Caraleigh,

It is good that the care team is on top of things ordering PT, bone scan and such. Prednisone is not talked about a lot but it is actually a recommended treatment early on, so good to see that too.

I second the pool suggestion. It has helped many of us and kept me in shape and is where I started walking again. It is also fun! The PT may not seem to have done much but sometimes what you are accomplishing is prevention of further loss of muscle and function. The gains can sometimes appear as neutral.

Brain plasticity is in your favor. I would suggest working on tolerance and recognition of stimulus. When there is a lot of pain in the skin this can be challenging but starting with soft cloth, moving to rougher, using nylon brushes, etc on a daily basis can help nerves remember what they are supposed to do.

Pay attention to when things feel better and worse. There is sometimes a push to hurry up and get better by overworking the area. This can lead to flare up and setback. Recovery with CRPS goes slowly and should be undertaken with care and mindfulness. Try to figure out activities that increase pain and back off from those, then start up again slowly. I must've done this a hundred times in order to walk again.

Trust your wisdom and instinct. Doctors and imaging aren't always accurate. It may be something is irritated in the foot that isn't showing on MRI. This does happen. If laying off regular activity seems to help your son, maybe revisit treating him he has like an injury for several weeks, especially if activity was never modified much. Just a thought....

Glad to see you are getting counseling. It is scary going through this and support is great. There are therapists who specialize in pain and use modalities such as hypnosis and EMDR (eye movement desensitization reprocessing) both of which I tried to very helpful effect. These can both be done with children.

Keep fighting and maintain hope. Dr. Stanton-Hicks of Cleveland Clinic says 80% of people improve over time. Odds are in your sons favor.

Sending hugs and healing love,