Complex Regional Pain Syndrome type 1/ RSDS

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Has anyone had any experience with Complex Regional Pain Syndrome Type 1/ RSDS in children. I have a 9 yr old with this syndrome bilaterally of both feet of 4 weeks duration. I am a Podiatrist but this is my daughter and am keen to hear of any non pharmacological treatment that may have been successful. Many thanks

 

How confident are you of the diagnosis? I have never seen or heard of a bilateral case before.

What was the inciting event?
What exactly are the symptoms?

 

Original injury was hitting back of left calcaneus on ironing board doing a cartwheel(don't ask). Fairly painful for a couple of days, on crutches but back to symptom free in 7 days. 4 weeks later had flu and tonsillitis. Was on oral antibiotics and unwell for 1 week. Mostly in bed. Started complaining of sore legs which after 3 days was so intense was unable to weight bear or allow lower legs to be touched. Gp thought it was osteomyelitis. Had bloods, X-rays inconclusive. Children's hospital A&E said was typical of the cases of CRPS 1 that they see quite regularly in kids especially girls 7-10 yrs. Advised Naproxen and physio. Gp was not satisfied so sent for more bloods and bone scan. Paediatric Rheumatologist diagnosed CRPS 1 and prescribed Lyrica, Epilam and Endep. Said it would probably be 6-12 months before 'normal'.
I saw a neurologist on request who advised the same medication. However both specialists said there was no real treatment and that theses medications were the most effective ones they know of at moment thus I was reluctant to put her on them.

A friend of a friend whose 11 yr old son has been battling same condition for 12 months found only real effective treatment for him was a specialist chiropractor. We went there and had neurological assessment which included QEEG/ Loreta, live blood test. This clinic is called Institute of Functional Neuroscience and run by a Canadian chiro. Has chiro ' registrars' that work there as well. They diagnosed CRPS1 and one of the definitive signs he said was to run a blunt pen on top/ bottom of both feet and after 2 minutes a raised red line ( can't remember clinical name) appeared on both feet where he pressed pen. Treatment was 4 x weekly adjustments to right side, vibration right side and TENS to right hand for 10 mins whilst doing multiplications. At home she had to listen to Mozart in right ear for 10 mins, stand on both feet for a minute 3 x day and I had to spin her clockwise 10 times in her wheelchair 3 x days. Within 10 days she was 80% better.
Unfortunately she has relapsed and is now back to 20% better than when symptoms first came.
Therefore I'm really keen to hear if anyone has had/ heard of anything/ technique etc that has helped clients. I was told that bilateral whilst not common does occur and in my daughters case it was the flu/ tonsillitis which created an autoimmune response which damaged the myelin. This rules out the unilateral treatment such as mirror box etc. so not sure if anyone has any 'pearls' that maybe of use.

 

That would explain it (there is a thread somewhere here on flu causing foot symptoms)

I can't think of anything to add to what you mentioned. Check those other threads I linked above.

? has anyone mentioned nerve blocks?

 

Here it is:
Transient oligoarthritis of the lower extremity following influenza B virus infection: Case report.

 

Two recommendations. 1. Probiotics to improve immune function.
2. Get a play ball about 30cm should be good for her age. Place it under her legs when supine. She can rock the ball side to side and put the heals on it and maneuver the ball in a circle or figure 8 to improve circulation, muscle coordination and spinal joint movement.

This has helped many of my clients with leg/foot pain and MS.

 

Could you expand on the ball routine please?

many thanks

 

"Could you expand on the ball routine please?"
Law: every action has an equal opposite reaction. Well in the human body it is not exactly opposite. It sets off a nervous system reflex to maintain the body's tension integrity. [somtimes shortened to tensegrity]
Rocking the ball from side to side stimulates the walking reflexes across the hips to the spine and up to the arms. This activates the spring mechanism of the spine which stores a rotational tension which is released with the opposite motion. If this reflex is impaired fear of falling becomes dominant and can inhibit walking. Practicing the reflex laying down can build the reflex without the inhibiting fear of falling
Similar results with maneuvering the ball in a figure 8 builds the control of reflexes that are used to prevent a fall.
To build walking strength the heals can be used to stretch the ball by pushing with one while pulling with the other.
I hope this explanation will help with implementation.