The biopsy is just that: a biopsy. A nuisance but a relatively common procedure. It is the potential diagnosis that is worrying me sick. The paediatrician could not allay my fears when I asked what the statistical results were for the biopsy results in children but Dr Goggle is more forthcoming. He says things like ‘many of the primary non-steroid responders will progress to end stage renal disease’ and things like ‘ten per cent of children with Idiopathic Nephrotic Syndrome develop steroid resistance (SRNS) and 50% of them will progress to end stage renal disease’.
I know, I shouldn’t use the internet for ‘research’ but these are reputable sites and, God knows, no-one else is telling me a fucking thing.
Up to now, statistically William almost certainly had Minimal Change Disease, a problem with the kidneys that has no long term effect on the kidney, hence the name. He feels pretty unwell, relapses were a possibility, the steroids are unpleasant, but overall nothing serious. I didn’t like the fact that he was hospitalised and that he is going through this treatment but it is not serious. Was not serious.
Now he is not responding to the steroids (although theoretically there is still a small chance he will) I suppose what I am really worried about is that he will require treatment with immunosuppressive drugs or, more worryingly, that he will have something called focal segmental glomerulosclerosis (FSGS) which is something you definitely don’t want to Goggle. Unless you are already having nightmares about your child dying from kidney disease. In which case the internet is a place of (slight) reassurance.
****************
For more information on kidney disease, nephrotic syndrome and FSGS, visit the idneybeans pages.
From the otherside of the world, from someone you don’t know but who still frequently reads your blog, I’m sending best wishes to you all. I hope William suddenly improves and your fears prove groundless. I hope that someone is taking care of you while you take care of William and that you can make the most of any offers of help you get. Be gentle with yourself and know that you’re in the thoughts of others.
I continue to think of your family and your little boy at this time and I include you in my prayers.
Stay strong. I know Google can give you answers but can also put the fear of God into you too. Drs not saying much though and I’d be doing the same. I hope the biopsy results come back soon as poss and give a good chance of recovery. Stay strong. Thinking of you from this side of the pond.
Step away from Dr. Google.
He is not kind.
Thank you.
As a mom to a 5 year old boy, all my love and strength in this time. May you get through this together and take the time to heal after the storm has passed.
Keeping you, little William, and your family in my thoughts and prayers.
Just popped over to say hello and submit a post for the carnival. So sorry you and your little one are going through this. I hear High School Musical 3 is fabulous according to my 8 year old. I hope it keeps his spirits up. Take care.
So sorry to hear of your troubles, all my good wishes go to you.
hi
My son is 17 months, he had SRNS when he was 12 months, I cried day through day, but I realized only me who can help him to pass. I read about SRSN in google, the more I read the more I worry, I always afraid of the staged renal disease so that I decided stop read about SRSN, I felt better.
I hope you and your son are better. he will out of SRSN in soon.
Best wishes
Remission // Feb 19, 2010 at 1:49 pm
[...] a year today since his biopsy. We never thought he would see remission and that he would go straight to renal failure. He was so [...]