Name: Jessica Dettmers (Mother, Becky)
Location: Fort Madison, Iowa
Child: 14 years old
Areas of body affected: hand, wrist, forearm and shoulder
Jessica was diagnosed with melorheostosis in 1995 at the Shriners Hospital in Saint Louis. At first it just affected her index and middle finger (which are bigger than those on her other hand). It has now spread to her wrist, forearm and shoulder. The skin on her forearm is mottled. When she was first diagnosed she did not complain about any pain. As she has gotten older, she has pain quite frequently (especially when it is cold). Her pain became so severe she would wake up in the middle of the night crying and saying she wished they would just cut her arm off.
In December of 2001, we met with an anesthesiologist for pain management. She has taken Neurontin (which has not helped much) and now has Lidoderm patches (pain patches which are applied directly to her arm) which have helped. Due to the mottled skin on her forearm, the anesthesiologist referred her to several other doctors. The neurologist conducted an EMG/nerve conduction study to see if she had any nerve blockage. That test came back normal. The rheumatologist tested her for Reynaud's disease and scleroderma. Those tests also came back negative. The neurologist said there is definitely something going on and thinks it might be vascular. There is another disease that he wants to have her tested for and we are waiting to hear back from him. Will update as soon as we hear something.
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