Help with MPGN

[Davis5]

My son is five-years-old and, barring a miracle, is about to be diagnosed with MPGN.  Doctors had entertained a diagnosis of PSGN, but he is 13 weeks post-strep with a C3 compliment of 15.  It hasn't moved in 13 weeks.  Today I am waiting on results from blood drawn ten days ago for C3 nephritic factor and C1Q.  At this point, we're praying that his results don't favor a Type II MPGN diagnosis because the prognosis is much more grim.  After the results of this test, I guess the doctors will probably move forward with a biopsy.
Is there anyone out there who has gone through this before?  I am so emotionally overwhelmed with the waiting, and the lack of answers.  Any help is appreciated.
Thanks!
~Andrea

[carlotav]

Hi here, I am going through the same thing with my almost 6 year old daughter.... It's so hard to believe there is something going on with her since overall she is so healthy and the only reason this all came up is because one day she woke up with puffy eyes (not dramatically puffy) and I thought she had woken up like that because she sleep a lot but something told me to take her to the doctor and I did... They told me it was allergies and to give her Claritin for two weeks... I was not happy in my heart with this answer and I told the doctor to do a urine test... She said isn't was not necessary but I insisted and thank god I did!! She has had so many lab tests and a biopsy within a week of catching the high amount of proteins in her pee... In ow we know she has this we just don't know what type and doctors are thinkin this is a genetic issue since there isn't an underlined cause (sickness) that they can find... They were junking lupus nephritis but that came back negative... My daughter is still a happy little girl and she hasn't manifest anything else yet... How are you guys doing? I am so worried about this entire thing and somehow trying to understand it... I know we don't know what the future is for her but I want to find out from people that Thrace this conditions what type of life I should expect from now on... Thank you so much for your time and attention in advance.

[Davis5]

Thanks for your information!  I am sorry to hear that you continue to have the worry of MPGN II, but am glad to hear that your case is considered mild.  Since I posted this comment, my son's doctor has concluded that he has a mild case of MPGN as well.  His doctor decided to hold off on the biopsy because the proteinuria and hematuria have become "trace" amounts, so he doesn't think he'd prescribe steroids anyway and would prefer to wait to biopsy.  Based on what he found during the C1Q and C3 nephritic factor tests, he believes that Davis has either Type I or Type III MPGN, and he thinks his outlook is good since the disease doesn't seem to be progressing right now.  My son is also on Lisinopril because his blood pressure has been high since this all started back in February.
Thanks for your prayers!  We will pray that your MPGN continues to stay in remission as well:-).

[cdkn77]

Hi Davis5

I am sorry to hear about your son. When I was in 7th grade (I am now 26), I was diagnosed with MPGN II. This was concluded after a biopsy was performed. I was initially diagnosed with what was considered a "mild" case, therefore I was not prescribed any medications for the disease.Children that are diagnosed with this disease are typically prescribed steroids. I am now in my mid 20's and my blood pressure is slowly starting to rise, so I am currently on Lisinopril for the hypertension. As for the biopsy, it is a relativley simple procedure, although frightening when you are younger. As for the disease, it is always in the back of my mind.. Doctors say that I am one of the "lucky" ones because my case is considered mild and it is not aggressive. I can understand your frustration and the feelings of being overwhelmed but try to take things one day at a time and make sure your son avoids Sodium in his diet, gets excercise, and drinks plenty of water and avoid consuming excess protein due to the proteinuria.

Good luck and I will pray for you.

C