hi my daughter (19 months old) has a pws on the left hand side of lower back. Although i was aware it would grow as she grows it seems to be growing faster than her rate of growth and has now started to cover her spine. Has anyone else experienaced this?; any thoughts? is this normal?
Can you give me more details of her diagnosis of PWS? If you prefer you can email me directly at the address below. Explain what you mean by growing? Speading out or thickening? Where is she being seen for this? Any treatments to date, etc.
VBF Director of Family Services
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An international charitable
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