I think my son has Paget's disease

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Question

My son has recently been limping.

The doctor did a blood test that showed a high phosphate level and he suggested that he may have Paget's disease.

I have been asked to take him for an X-ray and a further blood test in the next month. Is there any information you can provide on this disease in children as most of the information is for adults.

Could you also advise if you know of any long-term medication that may be required, and any problems he may run into further down the track.

Answer

Paget's disease is almost always a disease of older people. Although there is a form known as infantile Paget's, this is extremely rare and, as the name suggests, is usually detected in babies.

You say your doctor suggested that your son might have Paget's disease after a blood test showed a high phosphate level. I wonder if in fact this was a high alkaline phosphatase level as this is the enzyme which is usually raised in Paget's disease.

The level of alkaline phosphatase in children has to be interpreted carefully as it is often higher in children than it is in adults because of their growing bones. For example, the normal level in adults is anything up to 120 International Units per litre (IU/l) and in children aged 1 to 5 a level of up to 250 or 300 may be quite normal.

During puberty the level may go even higher. If you want more information about Paget's disease why not contact the National Association for the Relief of Paget's Disease at 323 Manchester Road, Walkden, Worsley, Manchester M28 3HH, tel: 0161 799 4646.

One further thought – I don't suppose the suggested diagnosis in your son could have been confused with Perthes disease, a condition which can cause limping in children, is more common in boys than girls and can cause symptoms in kids as young as two?

If you would like more information on Perthes disease have a look at a website called Orthoseek - http://www.orthoseek.com/topics.html which has lots of information about children's orthopaedic problems and includes a section on Perthes disease.

Yours sincerely

The Medical Team

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