my nine year old was just diagnosed with mpgn and i want info about it from anyone because her dr prettty much knows nothing but has her one 5 diffrent meds!!
I don't know much about it either but you may find the information in the link below useful.
My daughter is 7 and was diagnosed with MPGN type 1 nearly a year ago. Basically the kidneys continue to grow thicker and thicker which prevents them to filter the bodily fluids the way they should creating the symptoms associated with this disease. They can basically just treat the symptoms and try to prevent or slow the progression of the disease. It is very rare so there are not enough people with the disease for them to do studies to help the doctors know what they should and should not do for the disease.
My daughter has to drink a liter of water a day to try to help flush her kidneys and has to watch her salt in take to try and prevent the excess swelling from the fluid. She also takes Lisinipril for this disease, but so far we have not had any luck with slowing/preventing the progression of the disease. Luckily they caught her early enough that they feel like it is ok to play with and try and figure some things out for her.
I hope this has helped you understand it a little more! Good Luck to you and your little one.
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