Thank you Sandy,
Your information was valuable to so many. How is your daughter doing and how old is she? That is where I would take my child-have heard good things.
Today I e-mailed The Doctors TV show a request for RSD to be topic for a show. We need top places for the public and fellow RSDers to know about.
Take care, loretta and soft hugs for you both:grouphug:

Hi Loretta,

Remember Lindsay had Ketamine Infusions back in July, she got the flu, and is now in a full flare, we saw Dr. Kirkpatrick on Tuesday and he scheduled her for Boosters next week. So please say a prayer for her. Lindsay knows that the Ketamine infusions worked for her last time.
The Cleveland Clinic was a valuable asset that gave her coping skills and how to make it though the day.

We take our day's one minute at a time. I hope you are having some good minutes. Thank you for asking about my daughter. This site is always a great place for me come. Thank you all...

Soft hugs right back to you Loretta...:hug:
Love Sandy

hydrotherapy?
 

someone pointed me to the web site ** . From that site I realized that PT and at home , we should no longer be icing her foot. PT was always icing her foot adn that is probably why she always hurt more afterwards. I know get it.
I got very worried last night when laying in bed just swinging her leg (aka bending at the knee ) caused pain. She say that the "wind" on her foot hurt. The good news is that because she sometimes walks on her heel, the leg does get used sometimes.
My daughter responds well with the foot in warm/hot water. so we put her foot in a bathtub and I got a soft sponge out. I was able to get to rest her foot on the sponge a small bit. today, my friend is allowing me to use her hottub. since its normally off, we can make it not as hot as normal. It will be in teh high 60's here. It seems that if my daughter response well to water, its worth it going that route.
Like any other disease or condition, it seems that "knowledge is key" and we need to , as parents or patients, take matters into our own hands. I am trying to stop blaming myself. I let her get casted; thank goodness I fought the PA and said only 10 days not 3 weeks ! When she did not want to do PT, I did not push her hard enough.

Having RSD means that she has nerve pain. Nerve pain expresses itself (among other things) in sensitivity to touch (even light touch).

If you use water on her foot, try and stay away from extremes in temperatures, stay away from ice-cold temperatures and stay away from heat. Normal warmth, normal coldness. And trust her on whatever she can tolerate! Water is NO treatment in itself, she needs medical treatment, but in the mean time... whatever alleviates some of that intense pain... do it.

Most of all, don't push her! At all. She will tell you exactly when too much is too much! And with that kind of pain: TRUST her! PT alone without some form of medical treatment or pain alleviation to be able to do PT is torture.

Hi, I am so sory your daughter is having to deal with this.. and at such a young age too, and I realy feel for you as a mother too..

First I would start her on Vitamin C 500mg daily (ask pharmacist about dosage per weight) as soon as possible, studies have shown that Vitamin C (500mg - 1500mg) when given after a break and after surgery can stop up to 2/3 rds of CRPS from happening in injured people, she is at such an early stage too.. please see the link below about it:

Vitamin C hope for people suffering from extreme pain syndrome
http://www.arc.org.uk/news/pressreleases/13611.asp

Also when it comes to physiotherapy from every thing I have read and alot of the kids I have talked to.. it can realy turn CRPS around and put it into remission..
Children take to physiotherapy far better than adults with CRPS do aparently, and as long as you check out the facility thouroughly.. make sure they know CRPS and have delt with children succesfully, it may seem harsh but look at what progress your daughter made in that very short time.. and how quickly it took to fall back.. I think she would be a good candidate for this kind of multi therapy.

Physical Therapy
http://www.nationalpainfoundation.or...ysical-therapy

Pediatric complex regional pain syndrome
http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=15

Complex regional pain syndrome (CRPS) in children
http://www.uptodate.com/patients/con...wsrg&refNum=40

Baths.. Put epsome salts in her bath water the magnesium in the salts helps sooth the pain and reduces swelling.. elevate after the soaking.

Best wishes and hugs,
Sandra

Hi Mom & Daughter,
It's loretta- I'm glad you read about NO ICE! Good, like Sandra mentioned and others, PT is torture, I would be straped down on the table while trying to get my shoulder to work. My rehab Dr. that oversaw my therapy said it was the worst case she had seen. I don't remember the degrees. But I took pain medication before going to PT.
Water temperature needs to be Minimum of 86 degrees. We have a heater on our pool and I never get in it under 86 degrees.
I have RSD in my feet and legs, so I don't hang them over the side and have the blood flow= pain. I do walk every day whatever feels good, I've never been where I wasn't able to walk and I have it full body.
When I was diagnosed with RSD in my hand, and started PT, my hand Ortho Dr. oversaw my PT. He knew RSD and his PT people knew RSD. They did desensitization, which is very important. Because, like was mentioned, we are very sensitive even to wind. They had me doing it dailey at home too. I took 5-6 plastic bowls and fill them with different textures. I used cotton balls in one bowl, coffee grounds in another, sand in another, beans, sugar, anything that your daughter can tolerate. You could use pieces of fabric, and clothing is an issue for a lot of us.
Please don't beat yourself up- you love your daughter and did everything in your power to help her-you know that and we all know that. I'm still learning a great deal from all my friends here. They have given me hope beyond compare. thanks everyone!!!!!!:hug:: :)
PT alone is not enough like what was mentioned. You want a good children's neurologist that is great in RSD- like Cleveland Clinic Children
Hospital RSD Drs. A good Dr. dispensing the right meds is soooo important.
When I came back home with the diagnosis of RSD- I got a good neurologist and good hand specialist. I was a little late on diagnosis-so only got partial use of my hand back, but it went from frozen flat to being able to bend my fingers half way into a fist. So can type, cut my own food, button and zip clothes, tie shoes etc. The Tens Unit. the Oregon Dr. who diagnosed me, ordered for me, which my health insurance paid for, and paid for replacement lead pads. The Tens Unit helped my hand-it's not invasive-is a distraction to pain and I believe helps to desensitize the RSD limb.
Please know, as a mom, I know how much you care and love your daughter! She is so young and needs you to be calm and hopeful,and the friends here are all pulling for you both! Take care, loretta with soft hugs:grouphug:

At this stage of her RSD everything is like torture, you have probibly figured that out by now.. the worst thing she can do is nothing, she needs to use her limb as normaly as possible and to bear weight on it. And as you say a heel walk is still bearing weight, get her to do things on her own if she can it will help, and do alot of research yourself, we are our own advocates because alot of the profesionals don't seem to know whats best sometimes.

It is like they have out of date schooling and we have the up to date internet at our fingertips.. I can't tell you how many doctors and such that I have "educated" with more up to date research and medical studys.
Things like "No Ice" how basic is that and why dont they know it?

hugs

doubts?
 

My mother talked to an adult Neurologist who is a cousin and he mentioned that a lot of dr's are putting unknown pain and injury into the catagory of "RSD" and only about 1/2 the cases are real RSD. could it be possible to have something else going on where touching hurts her foot? Noone has wanted to do an MRI, so we never got confirmation about that the original injury.
What is very interesting is that she played outside all day yesterday. She was on her heel, but she played in leaves and put her foot in the 3ft pile of leaves. Yet this morning, it was all about "my foot hurts" i dont want to wear shoes" "I need my crutches". She refuses to give up crutches while in school. That I fully believe is all about "everyone will think I was faking if I dont have crutches". I also think that her pain sometimes is also about that as well. I dont know what to believe any more .... She feels pain; I know a some of is now pyschologically based at this point, as well as real.

The reason for a lot of this doubt, is last night, after she went to sleep, and was in deep sleep (not morning sleep), I manipulated her foot. I even put it under the covers. She did not wake up. I thought RSD is part of the involuntary nervous system. Wouldnt pain have woken her up? When I questioned her, she stated she dreamt that her foot hurt. LAter on , in the night, she did move the foot off the bed again.

Someone else relayed a story about how they tore a ligament and even light touch hurt them. PT was still required, but it again made me question the lack of MRI in this diagnosis.

I read all your stories and feel for all of you. I just want to make sure if my daughter is part of this "club" or not. I feel like a faker myself, if this is not the case. you have all been wonderful and so helpful!

When my RSD first started, my mum was able to manipulate my leg when i was asleep. My mum was like you at first and thought that I may be faking it because I couldn't even move it when I was awake but when I was diagnosed, my Pain Management Doctor was great and explained that when you are asleep, your nerves sort of 'switch off' which is why, you are able to do some things that you aren't able to when conscious. You can't move my leg at all now when I am asleep as it locks out to the side in a rigid position - my PM Doctor thinks that is because my RSD has progressd and got worse since I have been diagnosed unfortunatley.

You often find with RSD that you are able to do something and then you pay for it afterwards. Someone else on this forum has their signiture line set to 'For every day I play, I must set aside a day to pay' - that is sooo true!! I, and many others on this forum are often able to go out shopping for explample one day but for the next day/few days, we'll spend it in bed because we are in that much pain and too exhausted to do anything. My PM Dr told my mum that when we are out having fun, our bodies release endorphines so it sort of 'masks' the pain a little but as soon as we stop enjoying ourselves, the pain gets worse again - I guess that is true.

If you are concerned that your daughter may have been misdiagnosed, please try and get a second opinion and beg for further tests to be done!!!! My mum got me a second opinion when I was diagnosed, even though I was told by my PM Doctor that I was the first case he had seen that had all of the symptoms of RSD.

PLEASE, don't give up on your daughter - no matter what the issue is!! She needs your support and to know that you love and care about her no matter what. It's a very scary time when you have been told that you have such an awful condition so she must be really scared right now, especially with her age.

Does your daughter see a Psychologist at all? Maybe that would help her a little?

Please keep us posted when you can and don't give up! I'm here if you ever need / want to talk.

Alison.:hug:

I think it's high time to go see the necessary specialists. In the mean time, please just keep an eye on her and *help* her combat this, instead of making quick assumptions about everything. Don't touch her foot during the night like that again. Please! *You* may be doubtful, but someone doing things like that to an RSD limb (while sleeping) is the last an RSD patient needs! You might even unwittingly make things worse!

When can you go see specialists?