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!

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We welcome you, though we wish it were not under these conditions. I am currently really battling terrible pain myself, so I have to keep this short. The mood thing is very much a part of CRPS. CRPS is a Neurological Disease involving the brain, spinal cord, and every nerve running through the body. It may appear as if this is only a foot issue. Well, it is a foot issue, but that is not the whole story. It is neurological first and foremost.

I believe that most of us here would definitely recommend getting going on Physical Therapy as quickly as possible with someone that knows what they are doing in relation to CRPS. The sooner one gets going on it, the better the chance for remission. Also, if it is CRPS, the fact that your daughter is young works in her favor.

UGH.. my pain is sinking my ship. People here are great.. I am certain more will chime in.... Nice to meet you!

Kcmr166,

So sorry to hear all that you and your daughter are going through, but welcome to the forum.

CRPS can be very frustrating to all those that have to deal with it, patient, parents and other family and friends, and the doctors as well. It can be difficult to diagnose so do not get too frustrated with the doctors. It usually is a diagnosis of elimination, so that is one of the reasons that the doctors keep giving different a different diagnosis each time you see them. Have you seen a neurologist or pain management specialist that has experience with pediatrics yet? They are usually the ones most qualified to deal with CRPS. The rheumatologist is nice to have on board as well.

Physical therapy is one of the best treatments. Nothing works better than keeping things moving. If it is CRPS, your daughter does have youth on her side. Most children will go into remission if treated properly and given the time to heal.

I do hope that come morning, some of the other parents will chime in and share their experiences. I am sure that a number of the other members will do so as well.

Most people are diagnosed with CRPS after seeing a slew of doctors. IMO mine was a classic presentation early on, but I was not diagnosed for almost a year-when X-rays showed severe patchy osteoporosis. I was told it was so bad that it was likely I had fractures, but they could not be seen due to the osteoporosis.

It is heartbreaking to read about your daughter, but do not despair, because her youth is on her side and she has you, a mom who is seeking help and information.

Avoid using ice and anti-inflammatories. Ice is a no-no for CRPS. The latter, taken only in low doses still damaged my stomach.

Since I got little help from the medical field for the severe pain I ended up buying and trying lots of items. I found NOW liquid lanolin to help not only with dryness, but with allodynia. I used Saran Wrap to occlude the sores that formed on my lower legs. On the last few deep ones that seemed not to want to heal I found that Scotch Tape was effect.

Anything that constricted my feet and legs made me worse. I gave up compression stockings. I slept with a stool holding the covers off my feet, I find even now that I am improving too much weight from covers, shoes can be painful-so I still will use the stool and avoid heavy foot wear.

For swelling try the Bowen Technique. It is simply wrapping a bandana with special washing crystals to wick off excess fluid. I ordered the crystals from Amazon. There is a YouTube Video showing how to do this. It worked for me.

Look up mirror therapy. You can easily do this at home with your daughter. My daughter set up a mirror and chair so I could try this. It was helpful.

Epsom salts foot baths. Keep the foot and toes moving in the water.

Physical Therapy.

While all of the above helped me I made the most improvement shortly after taking Low Dose Naltrexone and a few weeks after that I was able to get into a warm pool to walk around.

You could email Pradeep Chopra, an expert in CRPS. Painri@gmail.com.

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,

Welcome! I will echo some of the things already said and try to pop in a few additional points.

Your daughter does have youth on her side. Many of the research articles I have read have shown children bounce back faster than adults. I live in Pittsburgh and since the show Dance Moms was/is filmed here we hear a lot about these young dancers. There is a girl who suffered from CRPS at a young age. She was in a wheelchair and now she is dancing all across the country!

A good pain management doctor is a very good thing to have. You may want to ask about a pain psychiatrist to help as well. Whatever the diagnosis this may help her (and you) deal with all the chaos that is going on.

Good luck and don't be afraid to ask questions!

Thank you for replying even though you were in pain. I appreciate all the support I have found here! I hope you are feeling better.

Thank you for the information. We have not seen a neuro or PM yet. PT is the first step. It is comforting to know that if this is what she has, there is a chance she may one day be pain free.

For starters, I hope this post finds everyone feeling well. I would like to truly say thank you to everyone who has responded. It is overwhelming to go through something like this especially because it is a diagnosis of elimination. It feels very isolating when you don’t have anyone who understands the process of what we are going through. We don’t know anyone who has this disorder and it’s hard to get people to understand that even though my daughter looks fine, she really is in a lot of pain on a constant basis. It is hard to hear people say she needs to “suck it up” or “toughen up”. For a child, she is very stoic and has a very high pain tolerance as it is. For example, when she went for her MRI, they did it with contrast and they had difficulty finding a vein. She had to be stuck five times before they got one and she just laid there with tears in her eyes but didn’t move or say a word. So, it’s helpful to hear from people who understand what we are going through and for the tips you have given us. It is also comforting to know that there is hope for her. I know we still have a ways to go before this is a confirmed diagnosis, but I appreciate having this forum for support. She will start PT next week. I don’t know what the future holds, but I do know that we have more hope for her recovery! Thank you!