We got lab results back today and my boy is officially in (medicated) remission!
(If it seems like you have read this before, the last one didn’t last.)
His blood results are looking fab. His albumin is still a bit low (although higher than it has ever been) and his cholesterol is still too high so he will go back on statins. Also, he will not taper any meds for fear of relapsing and his ciclosporin trough level is at near-nephrotoxic levels so we may not be able to use it more than another year or so – next year’s biopsy will tell us – but for now, he is stable and all is well. (And for my neph friends, we will continue to give William Galactose every three months, because as far as we are concerned, we think it may just be a wonder drug!)
It’s 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 sick when he was diagnosed that every night for months after his diagnosis I would stop outside his bedroom every evening and prepare myself to find him dead in his bed. No parent should ever have to do that.
So he is in remission and I am so thankful and so, so bloody happy.
Photo: josephpetepickle
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No words just (((((Huge Hugs))))) for you all.
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Brilliant, brilliant news! So happy for you.
So pleased for you, hope you all have a fab weekend. xx
Lovely lovely news.
Great news, you all deserve this great news.
I’ve been lurking your blog for a couple of days now. Loving your posts and reading them aloud to my husband who in the midst of one said “I think I’m finally starting to understand there are some really good writers out there writing blogs.”
Anyway, when I read this post I couldn’t lurk any longer. I’m so happy for you! This is great news. What a relief for your whole family!
My husband suffered from Nephrotic Syndrome as a child, though no underlying cause like FSGS it was just one of those things. His mother too, had felt the same way. He was hospitalised for months and each day she’d be almost afraid to visit for fear she’d find him worse or dead.
Our youngest son was recently diagnosed with a genetic disorder as well. Though it’s not nearly as serious as FSGS (though it has the potential to be). Reading your posts regarding your reactions to his diagnosis have helped us with our own.
So thank you. I identify a bit with you and at this moment I couldn’t be happier if you had told me I’d won the lottery.
Can’t wait to tell my husband!
Phew, I actually felt your releif reading that post, it is such a big thing.
oh what wonderful news! i am so happy for you!
Oh fabulous news. Tears here xx
I have tears in my eyes for you. Your relief must be huge. My boy has learning difficulties and while his situation is in no way like yours, I know the true joy of feeling a step in the right direction. Enjoy, you have earned it.
Great news. Your happiness and relief radiates through your post. x
That’s just wonderful. I’m so happy for you all.
That is such wonderful news. It has made my evening. My thoughts are with you all for a CONTINUED remission. xx
Oh, and I’ve tagged you over at mine for something…
thank you
That is absolutely fabulous fabulous news!!!
Fantastic.
Ella just found your story after doing some research.
My 15 year old daughter was diagnosed with Nephrotic syndrome in June 2009 and then in August after a biopsy diagnosed with FSGS. Up to now she has never been in remission the cyclosporin did not do anything for her condition and is now on tachrolimus which is also not having any affect on the neph. The albumin levels drop at each visit but luckily apart from the swelling she is keeping quite heathly. Today at clinic doc put her on Frusomide to take some of the swelling down from her legs and tummy. The hospital said 3 weeks ago that things were deterorating but because she feels so well and is still very active it’s hard to believe! Is there any advice you can give us?
Debbie, thanks for your comment and I’m sorry to hear about your daughter. Firstly, is your daughter on a low sodium diet to help with the swelling? For a while we tried lemon squeezed into water and that seemed to help too.
Do you know whether her FSGS is genetic or due to a genetic mutation? If it is not, it might be worth looking into trying galactose which some people feel has worked with those who have the so-called permeability factor. We have tried it and William is in a more steady remission than he was but we can’t be certain whether or not it was the galactose.
We put William on high dose Omega 3 and it was when we did that that he seemed to go into a steady remission. However it could be that the ciclosprin just decided to kick in and work properly but we feel it was the Omega that really helped. We use Omacor as they have a very high DHA and EPA content. If you decide on either of those options, always check with your neph first.
I would definitely recommend joining NephCure and Kid_Comm, two forums (the latter is an email group) where there are fantastic parents and kidney patients who answer queries.
Please feel free to ask me anything else, and also to friend me on Facebook where several of us swap notes about our children’s progress – it’s all help and support and I don’t know how I could have managed without the support of other parents going through this x