Here is where we are at. On Monday morning she walked in PT. Never to happen again though The elbow was better and is a non issue now. The other improvement is that the sensitivity is gone. She can wear shoes and socks now. We tried to take away teh crutches, but on Tuesday at school a boy stepped on her foot and after that, she refuses to give them up now. ARGGGGG.

What has happened this week is that she has a lot of girl drama at school (non RSD related). I have noticed that when she is stressed out, that her pain gets a lot worse. the other night she misbehaved very badly (also non foot related) and we had to punish her. She went off to her room to cry, and shortly afterwards, she called me up and was hysterical now about her foot hurting like a 10. The light bulb went off and even though she was punished from TV and computer, I allowed her to watch her favorite movie for 15 minutes. I needed to distract her and calm her down. I know that when you are upset the "volume" gets turned up.

yesterday, we saw a therapist and she started to work on relaxation techniques. Today we also are changing PT's to the ones that specialize in children, as my Pain Dr has trained them and wanted me to do so.

I am hoping that the thanksgiving break will give her a chance to not be stressed out. that we can go to the pool a lot. I think that will get her walking again.

Thanks for listening again.
Only 8 more days until black friday

Hello Sandy,

It seems Great to me, that your daughter is making positive decisions, that she "Can" do things!
That she fell on her arm, and it hurts, I would consider to be a one time incident. RSD does Not instantly "jump" to a new place like that.
I'd be a bit more concerned about why did she fall? Is it that she's not used to the medicine yet?
Did she hit a bump? (If she's prone to falling, be sure she has a Helmet!)

What I found really astonishing reading your note, was that you say, "She comes running"!
Running? That's great!

Keep your chin up!

Prayers for your daughter and yourself!

pete

asb

Stress, of all kinds, (mental, physical, temperature, fatigue, etc.), Sandy, is probably the worst thing that can happen to rsd.
Children have different and much simpler stressors than we do.
Just be aware.

pete

Mike,

My daughter injured her ankle years ago when this all started. Her ankle is very weak, if she rolls it she will normally go into a flare, which is basically a reinjury according to her doc. So that is basically what I meant, just to be careful.

But, thanks for the clarification.

SandyS

My child is walking , my child is walking!!!!!!

It seems that everything is finally working and the last part of the equation came into play yesterday. This week we were able to get rid of teh sensitivity which is what caused the diagnosis to begin with. The meds, combined with PT really helped. But she still could not put the front of her foot down.
The new PT was manuipulating her foot while she was distracted and she could handle it, untile he squeezed her foot. then she was in a lot of pain.
At that point he thought about a neuroma between her toes. He then put this padding on the ball of her foot in her shoe. In essence almost like her walking on her heel but actually being able to put the foot down. Now that we can wear shoes and be touched he could do this. This puts very little pressure on teh top of the foot where she hurts the most. all of a sudden she coudl walk. My little girl was BACK!!!!

So now my theory is that her original injury caused this neuroma , so some of her pain was real, but then the RSD came along, or could it never have been RSD but some other hypersensitivity? I really dont know. She could not wear socks, shoes, or be touched on her foot at the worse of this. None of the Ortho's ever thought about this because of the multifaucet of her pain. (the original orthos were just casting idiots). When you look up info about neuroma's its not common in peds, and also didnt exactly describe what she talking about. I still dont know if that is the case, but right now, with this special padding, my daughter can walk and run. She is still in pain, but can manage. I have to find out how long we need to keep her on the neurotin before we start winding it down.

I really feel for the rest of you. I could not imagine this going on for years and years from what you all face. Especially with kids. This was such a scary thing to realize when it happened to us. My daughter was in such despair that she would be facing this for a very long time. My heart goes out to all of you for all your advice and kindness. I have learned so much. It seems like we are on the way to remission here.

Thanks!
sandy