Child dx'd RND/RSD Stage 3 Need Advice PLEASE!
 

Hi! My 11 yo daughter was diagnosed recently with RND/RSD Stage 3 in her ankle/foot/lower leg. A three phase bone scan revealed very littlle blood flow below the knee. In the last 2 weeks, it appears the RND is spreading to her hip. She cannot walk or handle any weight being placed on the ankle.

She is taking neuontin and was rx'd tramadol. She has started physical therapy and is getting a soft leg cast after each treatment to keep her foot at the proper angle at night.

I KNOW PT is the best was to knock this into remission. Her first session was basically just touching her skin with different types of stimuli. Her second session (different therapist) was what I would consider (yes, this is coming from a mommy) barbaric. The therapist started flexing her ankle with great force, rotating her ankle, 20 min of heat therapy followed by 20 min of ice therapy, tried to have her weight bearing and strapped her ankle into an exercise bike to rotate the ankle.

Our little chicka is one tough cookie, but that was just too much. We were trying everything to keep her from passing out. We want to do everything we can to help her, but I can barely bring myself to take her to her therapy appt today.

Is it standard protocol to that intense therapy in the second session? I thought ice was bad for RND/RSD (she completely lost it with the ice on her skin)....Is that standard?

Has anyone tried Calmare? I have been researching non-stop. I know it may not be a 100% solution, but if it can help reduce the pain so she can handle physical therapy, that would be a huge step in the right direction.

We are located in Northern VA and have had little success finding any pediatric specialists for this condition.

Any advice/suggestions/answers would be greatly appreciated. I can not even imagine what my daughter is going through. Having her look me in the eyes and begging me to make the therapist stop hurting her was almost too much...

Thanks!

There are several people on FB that have had great success with their children at Childrens Hospital Pain Program. If you go on FB and look for Walt Yates, he can tell you all about it. He is on the Yahoo Parents group and I think at Ketamine Klub for RSD/CRPS patients as well.

You need to put your foot down. Ice is the worst possible treatment for RSD closely followed by Hot and cold water contrast therapy. Aggresive physio is also another big no no. It can cause it to spread or ruin any chance of remission. Even says not to do it in the American Journal of Medicine. Physio should be intensive, meaning lots of it but when the pain starts to rise your daughter must tell you and you have to insist they stop.
Ideally she should be given pain medication immediatley before any physio session starts. Then you need to encourage her to continue to do mild exercises at home as often as she can.

My experiance with pt was fairly similar. First time was ok, second time was unruly, and it got worse from there. You need to stand up and put your foot down. I wish i had, the wrong pt set my back quite a bit. Now going through it at home with a much lighter pace, and am slowly but surely seeing improvement, with minimal extra pain.

If they wont listen maybe you should find another pt place.

Good luck, and my prayers for your little girl.

Sounds brutal to me. My wife has RSD but is not young so I'm not sure how PT treats the very young with this condition. Ice is not a good idea what so ever.
My wife and I also live in Nova. We live in Fairfax which some would think would be a mecca of RSD treating doctors. After 10 years dealing with a loved one with RSD, the DC area has been the opposite as far as I'm concerned. I'm curious to know who is treating your child. I may be familiar with the doctors or facility. I could also recommend a couple places that may help. But sad to say it seems the best who treat this disease are not in the DC area.

Ice will cause permanent nerve damage and possible spread. Immobilizing her limb is also likely a very bad idea. How much experience does her doc have with RSD???

Warm water PT would be a better option, IMO. You need to find a therapist experienced with RSD. Research children's inpatient RSD programs offered at one of the hospitals. There are several threads about children's programs here on NT. It will offer her the best chance for remission. (The sooner the better.)

I agree with the others. I think it's time to find a new therapist. The fact that they are using ice and contrast therapy shows they are not educated on "best practices".

When you interview any professional that will be treating CRPS, ask them directly how much experience they have with CRPS.

Good luck to you and your child!

Hi. So sorry this is happening. I have a daughter with crps as well. It is so hard to watch your child go through this. Check out rsdsa.org. There is a lot of information and resources there. Also, Dr. Sherry at Children's Hospital of Philadelphia. He has a program dedicated to children with conditions like this. I know there is quite a waiting list, but I have spoken with them and they were able to give me the names of other places closer to me. Or maybe your pt and doctor could contact them and find out what the correct protocol is for treatment (definitely not ice).
Hope this helps.

Heating blanket!!
 

My heating blanket is my best friend. Its the best thing I have ever bought. I got a sunbeam one at Jcpennys. The blankets tend to break after around 6 months and Jcpennys take all returns without time limits. This is especially helpful when its cold outside because cold weather will make her nerves hurt more. Also try to tell her to limit or discontinue any use of caffeine or sugar. I was surprised to find out how many things have a lot of caffeine such as tea and how many things have a lot of sugar such as milk. I now drink almond milk as much as possible. I'm not really a huge fan of soy milk but that is great too. They also have twice as much calcium which is helpful to keep her bones strong because rsd can weaken them over time. Also adding a multi vitamin and b12 helps to stay healthy with this condition. I use gummy multi vitamins because its a refreshing break from all the pills. I also use melatonin to help sleep at night because when you are in pain all the time its really hard to sleep. Its a natural supplement that your brain makes to help you sleep. I hope this helps!

There is help
 

I was diagnosed with RSD in my left foot approx 20 years ago and listened to my stupid doctor and went through RSD hell. But that's not important. Here is the treatment which I found thanks to US governmental agency and which helped me tremendously: DAILY LOW DOSES OF ULTRASOUND = 5 minutes a day without any pain. I don't remember the ultrasound frequency but it was very low and tested by the doctors at UC Davis, so they can advise you. Now I am using only patches infused by capsaicin and belladonnae radicis, witch I found in Europe. I don't feel the pain and I can walk again. No pills, nerve blocks or other expensive treatments are needed and I went through all of them. Ultrasound works on lower extremities and for the upper part of your body supposedly laser is helpful. I hope this will help your daughter or somebody else.