Comments on: Remission

By: ella

ella — Tue, 11 May 2010 21:18:28 +0000

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

By: Debbie

Debbie — Tue, 11 May 2010 19:08:29 +0000

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?

By: Violet

Violet — Sat, 27 Feb 2010 07:07:58 +0000

Fantastic.

By: Notes From The Frugal Trenches

Notes From The Frugal Trenches — Fri, 26 Feb 2010 23:05:38 +0000

That is absolutely fabulous fabulous news!!!

By: ella

ella — Mon, 22 Feb 2010 09:56:29 +0000

thank you

By: Heather

Heather — Sat, 20 Feb 2010 08:33:37 +0000

Oh, and I’ve tagged you over at mine for something…

By: Nicola

Nicola — Sat, 20 Feb 2010 06:24:58 +0000

That is such wonderful news. It has made my evening. My thoughts are with you all for a CONTINUED remission. xx

By: Lorna Harris

Lorna Harris — Sat, 20 Feb 2010 05:40:33 +0000

That’s just wonderful. I’m so happy for you all.

By: Nova

Nova — Sat, 20 Feb 2010 00:13:35 +0000

Great news. Your happiness and relief radiates through your post. x

By: Kate

Kate — Sat, 20 Feb 2010 00:03:56 +0000

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.