Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 03-05-2016, 10:14 AM #6
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Littlepaw Littlepaw is offline
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Littlepaw Littlepaw is offline
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Hello and Welcome,

I am sorry for what your daughter and family are going through. As a parent I know how hard it is to watch your child suffer. You will find this a great place for sharing and support.

Of course none of us can say if this is CRPS. Cases of CRPS have arisen spontaneously so could chilblains cause it? I suppose it is possible. The presence of symptoms over two winters does at least sound chilblain-ish.

The big caveat here is that treating any underlying pain contributor is very important in beating this back should your daughter indeed have CRPS. Since this a diagnosis of exclusion ALL possibilities need to be run down. Physio and pain management can certainly be pursued as treatments of CRPS while any continued consults or testing are done to make sure anything treatable is identified. Specialists often see the same problem through different lenses so it can take a while to get consistent answers. You might even consider an additional biopsy, it has been a year and the neutrophils could've been from the infection. Results may be different this time and shed further light on the problem. CRPS mimicks many things and can be misidentified. My Physical Medicine doctor told me of a case he and a surgeon struggled over, not being sure whether it was infection or CRPS. They very reluctantly went in and debrided the area. Turns out the patient had deep infection. BTW, I am not advocating this, just saying how important it is to be sure you are treating the right thing.

Vasodilators are used as a treatment for CRPS so you may want to ask about trying the nifedipine again or something similar like topical clonidine.

I am not surprised you daughter's mood is suffering. It is frustrating and scary for anyone going to doctors and not getting answers. Especially so for a child used to relying on adult's care and expertise without question. Pain alone can make one short and irritable, so I would not worry too much over this being a sign of more entrenched brain changes for the time being.

Keep you daughter's stress down where you can, consider Vit C daily in a dose safe for her age (anti-oxidants are helpful), get her in a nearby pool at the YMCA or someplace if you can, it will allow her freedom of movement with her foot and has an element of fun which is so important. Epsom salt soaks like Bio Based recommends in warm, not hot, water may help with pain and swelling in her toe.

Please let us know how your daughter is doing. I second and third that her youth is an advantage. Hold on to hope, no matter what. If it is CRPS the majority of people, 80%, improve over time according to one of the big researchers at Cleveland Clinic.

I hope relief and healing find your daughter soon,
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