My daughter, who has had diabetes for approximately 10 years, has pitting edema in her legs, and stiffening of her joints (wrists, elbows and ankles). She had several blood tests done which all returned negative for scleroderma, rheumatoid arthritis, etc., and she is currently under the care of an endocrinologist, rheumatologist and dermatologist.

The dermatologist did a skin biopsy (results not back) and is leaning toward scleroderma. She also mentioned eosinophilic fasciitis which she said happens in people with poorly controlled diabetes, but she is doubtful of that. I am having a difficult time finding information on scleroderma.

Can you explain what scleroderma is? Is this treated with steroids? If so, I understand that her endocrinologist needs to be directly involved due to the fact it can lead to fluctuating blood glucose levels. Does this go away when treated? What about the stiffening in her joints?

You should be working with an experienced pediatric diabetologist on this problem. There are several excellent people in your area.

I wonder if your child has had such poorly controlled diabetes for such a long time, if this could be Mauriac Syndrome. You did not mention the hemoglobin A1c levels, but these would usually be very high (above 10%) for many months.

this can also sometimes lead growth failure, delayed puberty, liver enlargement, and also peripheral edema as well as LJM (limited joint mobility). The LJM is tissue damage to the collagen from glucose attaching and stiffening the skin. The joints themselves are completely normal so all the rheumatologic tests would be negative.

If this is the case, then efforts to improve glucose control will be critically important. She needs close contact with a diabetes team perhaps with direct parental administration of insulin. She would also need close surveillance by ophthalmologists since retinopathy could worsen with improved control.

SB