I have a 15-year-old daughter who is in excruciating pain. It started with a dull headache in November. Next, came the migraines. She has had them since January. They last a week or more, and then it goes back to the dull headache for three days, or so, and then the migraine comes back. She was treated with Topomax, but the psychological side affects were too bothersome, and we never got it up to a dose where it would do any good. Now she is on 20 mg of amitriptyline, once a day. That has not taken care of the migraines either. About a month ago, she started having pain in her left leg. It was an extreme pain, from just above the knee, down to the ankle. She was in tears. We went to the ER, they gave her some IV meds, and sent her home. They said that it was probably related to the migraine. Two neurologists have said that it is not related to the migraine, and they don’t believe that it is neurological in origin. I took her to a rheumatologist. He did several blood tests. Last night she started having the same kind of pain in her left arm. She said that it feels just like the leg did. When the pain in the leg started, she had a weakness in her left arm, but it wasn’t painful. Today I called the rheumatologist, and they said to bring her in. When we got there, we got the blood results, and they were all normal. He said that it was something like, fibromyalgia, but not exactly because that is more diffused, so maybe a regional pain syndrome, “If you wanna put a name on it.” We still have no idea what is causing this, or where it will lead next. She is unable to walk because it is very painful, and when she tries to put pressure on her leg, it buckles under her. She is using crutches. He told her that she doesn’t need the crutches, and she should stop using them. Even when she has had a slight relief from the pain, she was not able to walk because her leg buckled under her.
Two years ago she had a period of two weeks where she had a fever that we could never find a cause for. A couple of days after the fever went down she started having stomach problems which turned out to be biliary dyskinesia, gallbladder disease in the absence of gall stones. She had her gallbladder removed. I don't know if this is in any way related, but I just think it is strange to have so many unexplained things going on in such a young girl.
Tests that have been done include. A bone scan, which showed less circulation in the left leg, also called decreased uptake. She was tested for inflammation and lupus -- negative. Her liver enzymes were high, for a few months. They are normal now. MRI and MRA were normal. She had a vitamin D deficiency which we took care of with supplements.
Does anyone have any ideas what this could be? The pediatrician mentioned possibly Reflex Sympathetic Dystrophy. The neurologist said that he had never known it to happen in the absence of an injury, but I have read that it does happen that way, sometimes.
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