Help! Daughter diagnosed with MCGN Type1

[clairebear]

Hi,

I'm hoping some of you might be able to help me. My eight year old daughter was diagnosed with Mesangiocapillary glomerulonephritis type 1 in December 2012, and is currently on steroids every other day. I know the basics about the disorder, ie, she is leaking to much protein into her urine, and the symptoms; she currently is on penicilin and blood pressure meds daily and she retains fluids. She underwent a biopsy to be diagnosed, which showed minimal damage to her kidney, and her kidney function is currently normal. My main problem is the internet and its many, many pieces of information, which are not helping the rollercoser of emotions I am currently on!
One minute i deal with it and cope well, the next i'm a wreck thinking about the possibility of her kidney failing!

I'm desperate to get some actual fact from people who are going through the same thing or suffer from MCGN type 1. It's hard to understand a lot of the jargon and i end up more confused and worried that when i started half the time, so if there are members on here that can help please get in touch.

NB:We are from North Yorkshire and she is currently being treated atLeed General Infirmary.

Thanks :0)

[Unifluzie]

hi, i dont have much info about mcgn but another user has just found that they have this aswell, nannymacleod, she may be able to share her experience and vice versa as from what i can gather it is not a widely known illness and it may be good for you to both talk etc

[per156]

Hi Claire !

Sorry to hear about your daughter´s illness but she is not alone in the boat we are many there with different types of nephritis However the common things for all of these seems to be to keep down the blood pressure and also the protein outflow(albumin in this case). Fortunately there are a lot of blood pressure drugs which do both at the same time. She can ask for one called Lercanidipine and combine this (if necessary) with one of the following: Candesartan, Irbesartan, Losartan or Valsartan (these are good ones, generics and also with low prices). While she has normal kidney function she should not be so much affected by the raised potassium-levels caused by the -artans, but this must always be checked in the blood. This would be a fine addition to the steroids.

Take care
Best regards
Per