It breaks my heart to hear about your daughter and you are a wonderful mom to be helping her during this difficult time.
I can't stress enough: Time is crucial in getting this reversed or put into remission. I have been able to help several patients in our area get just that so I do know it is possible!
There are several wonderful support groups for children with CRPS from RSDHope or CRPS.org that your daughter should join so she knows of others who can give her insight & help and see that she too can overcome so many obstacles she will be faced with. Education is highly important for everyone to understand about this condition. Not only her friends but also her teachers should should all be a part of helping her through this instead of isolating or abandoning her. There are also some very good pamphlets about CRPS from kids to kids that are amazing too!
Her dr is right about keeping her walking on it even when extremely painful for this condition worsens when the limb is immobile.

Doing a warm Sea Salt Mud at least 2x day will help to ease some of her pain, circulation & keep the skin moist. I picked my Dead Sea Salt up on Amazon fairly reasonable price.
After the warm soaking of her foot or if doing the mud have her gently rub mineral oil or baby oil gel into her skin. Even massaging her toes, ankles & shins helps to stimulate the area reducing the symptoms.
Also be careful what type of shoes & socks she wears for any thing tight on her skin even up her shins can create havoc for her. It may start out as fitting normal but even after only 15 minutes can result in added swelling or pain. I use fleece or very soft socks without the traction on the bottoms as this can aggravate her pain. It might help if she wore slippers 1 size larger than normal so she can wear thick socks if need be.
I had to redo my entire bed to reduce the weight of the covers (now use fleece instead of thick heavy quilts) and soft warm sheets.
Remember as her support system you too will need all the support from others for this can all be overwhelming & scary at times.

I wish you both all the luck in getting her help quickly and will say a prayer that she will no longer suffer.

Gentle hugs

Hi Buffym,

Welcome!

I, too, am very sorry your daughter has had to endure these challenges.

Many have responded in length with helpful information.
I haven't much to add at this time.

I do want to express my gratitude to you for your willingness to become an advocate for your daughter, your willingness to do some research to help her, etc. Not every parent steps up. I want you to know you have my deep admiration for stepping up for your daughter.

I remain hopeful for your daughter's healing.

Warmly,
DejaVu

It really sounds like your PT is doing some good work with your daughter. It is wonderful that you have found someone knowledgeable. My daughter (now 16) was 12 when she was diagnosed. Please feel free to private message me if you would like to talk about our experiences. We have tried a variety of medications and therapy approaches. Best of luck!

I can't thank all of you enough for your kind words. We have another PT session today after school. We even had some fun doing her at home PT this weekend, was so great to see her smiling and so proud of herself for working to help herself.

Also, if you're wondering what kind of specialists treat CRPS, there seems to be several. Some see neurology, or pain management, or physical medicine rehab specialists. I think there's a couple others that I can't recall just now. It just depends on the level of expertise the doctor has with CRPS, and if they really listen to understand.

So glad pt is helping your daughter! My son is 9 too and going through similar situation. We went to register doctor to podiatrist who thought it was just a simple injury. Then to sports doc now with a neurologist. He has severs as well as an extra foot bone. But they found out by mri that those are not the major problem. Now they diagnosed him with complex regional pain syndrome and doing a bone scan this Friday to back that up. He's on prednisone and neurontin. Which has shown side effects now so they said to back off neurontin until steroid is done. Then start the neurontin back up to see if that might help. I feel your stress and I'm also besides myself. Oh they put him on crutches too...he's now off of them....lidoderm patches helped with that. On top of this he ended up with his left intestines impacted due to being immobile and the meds. Every time he tries to be a little active he ends up in even more pain. :/ your not alone <3

Thank you for responding. My kiddo is going for an evaluation at one of the major children's pain clinics for CRPS in early December. Fingers crossed that they can help. She's doing PT twice a week now, plus exercises at home every day. She hasn't been on any medication yet. The PT is getting her leg strong again, but hasn't done anything to help her pain yet. Originally they though her foot pain was caused from Server's Disease too & inflammation in her growth plate.

Just a quick update - we had a great visit with multiple specialists at a major children's hospital, they did confirm CRPS. But, because of her age, neuroplasticity, and how early we caught it, they were very hopeful about her chances of getting to be pain free. So far they told us we had been doing everything right, and often they don't see kids until they are much further along. This was so reassuring to her dad and me. So overall, feeling really hopeful.

Yay! That is so good to hear. So glad that they caught it early and think she has a chance at remission. That has to be a big relief to all three of you.

Hi Buffy,

Thanks for the update. What a blessing! That is all so very hopeful and wonderful to hear.

Keep us posted. We are rooting for your daughter and family.

Sending warm thoughts for healing and comfort,