My 10 year old daughter has a history of eczema and intermittent asthma. She was just diagnosed with possible CRPS. Her story is a frustrating one that begins in January. 2015. Her third toe spontaneously swelled, turned purple, had some itching, and had a lot of pain in just that toe. She had no precipitating factors, including trauma or traditional cold exposure. We went to the pediatrician who referred us to a podiatrist. The podiatrist thought it may be a dermatitis and had us put hydrocortisone on it. The hydrocortisone didn't really help but it resolved itself around the beginning of April.

Fast forward to December 2015. This time, it was her second toe that began to swell, turn purple and again she had a lot of pain in just that toe. The only difference is, there was no itching this time. As was the previous time, there were no precipitating factors, including trauma or traditional cold exposure. Back to the pediatrician we went, who ordered blood work and referred us once again to the podiatrist. Other than her cholesterol levels being high, her blood work was unremarkable. We went back to the podiatrist who did an x-ray, which was negative. The podiatrist told us to use the cream we use for her eczema (Cloderm). Because of the lack of trauma or cold exposure, he thought it may be related to her eczema or maybe psoriasis. Within one week she developed something that looked like a blister, which opened the day after it developed, and turned into a yellowish lesion. We immediately put Neosporin on it and took her back to the podiatrist. He did a biopsy and prescribed antibiotics which helped it heal. They also did an MRI. Even though there was no direct exposure to cold, the biopsy came back with diagnosis of superficial and deep perivascular dermatitis consistent with Perniosis (chilblains). Although, there was a comment that said the number of neutrophils was an unusual finding for perniosis and warranted the exclusion of an underlying cellulitis.

At that point the podiatrist referred us to a pediatric rheumatologist, who said her symptoms were somewhat consistent with Chilblains. They said even though there was no traditional exposure to cold, a cool tile or wood floor could have been the trigger. The rheumatologist wanted to review the MRI, but the plan was to treat the chilblains with Nifedipine (to help with blood flow) after the MRI was reviewed with the radiologist. According to the doctor, the MRI had showed some fluid in her joints, which may be an indicator of JIA (juvenile idiopathic arthritis). At this point, the rheumatologist put her on Naprosyn 375mg twice a day and said to hold off on the nifedipine. Just over two weeks later, my daughter had only slight improvement in the pain but was having difficulty sleeping, daily headaches and stomachaches from the Naprosyn (even though she took it with food), so we returned to the rheumatologist.

They took her off the Naprosyn due to the side effects and did another x-ray of both of her feet/ankles to rule out a bone infection. The rheumatologist said that the results of her MRI were inconsistent with the physical exam performed and thought JIA was less likely and gave her the possible diagnosis of CRPS (due to the fact that she has deep pain localized to her second toe as well as pain with feather-light touch on that second toe). Her pain is localized to her second toe and in one area of the big toe joint, which she reports as constant. She has no pain or stiffness in her ankles. Physical therapy has been ordered and we have a follow up in May.

Does anyone know of someone in a similar situation? Does this sound like CRPS? Can chilblains result in CRPS? Any other possible diagnoses? Are there any other treatments other than the physical therapy? It is incredibly frustrating to get a different diagnosis every time we go to the doctor. My daughter will not say it, but I know that she is getting frustrated as well. She has been getting upset for seemingly no reason and has a shorter fuse than normal. I think it is a combination of the frustration of lack of definitive diagnosis and the constant pain she is in and has had since December. Any help would be very much appreciated! Thank you in advance!