Comments on: When the future won’t be quite what you hoped it would be

By: Diane

Diane — Thu, 07 May 2009 19:59:42 +0000

Hi Ella, yes she is steroid dependent, but she is half way through intravenous treatment (Cyclophosphamide). You may know about it, it’s a full day of being on a drip to suppress the immune system and stop her relapsing. I can only pray that it works and she doesn’t develop further problems but that is always on our minds and is possible. Poor William is really going through the mill. It must be so hard coping with his condition and three brothers. I really do feel for what you are going through. No parent or child should ever have to go through this. I often wonder what have we done to deserve this when we are good honest people. It’s just to heartbreaking.

By: ella

ella — Tue, 05 May 2009 13:23:27 +0000

Diana – I am sorry that your daughter has nephrotic syndrome and that she has been on steroids all this time. In many ways it is just as bad as FSGS if they are steroid dependent. Will she try another drug? Please feel free to email me if you want to stay in touch.

By: Diane

Diane — Sun, 03 May 2009 22:10:11 +0000

I really feel and understand what you are going through. My daughter is nearly four and was diagnosed with nephrotic syndrome last August. It was a shock and we too had to try and come to terms with her not being the perfect healthy child we wanted. It takes time and I’m not sure even now we have come to terms with it. She has been on prednisolone since then and recently started intravenous treatment once a month. The side effects from steroids are terrible but the thought of your child being ill (or worse), possibly seriously and the chance that they could need treatment all their childhood is terrifying and sometimes incomprehensible. Your experience and son’s condition seems worse than our daughter’s at present and I can only pray he gets better and there is more and more that can be done medically as time goes by. I know we feel we haven’t got time but we have to be optimistic and take it one day at a time. We are. It’s hard, we will do everything and anything we can for our daughter to make sure she gets the best treatment. All we can do is our best, we are helpless when these conditions strike, but we must carry on for their sake.

By: A Modern Mother

A Modern Mother — Sun, 19 Apr 2009 07:58:24 +0000

Writing about this will get you through it. Can I send you some pencils?

By: Maternal Tales

Maternal Tales — Sat, 18 Apr 2009 20:10:50 +0000

I’ve only just discovered your blog. Sorry for being so late! I’ve just read some back posts and your story has truly touched me. You poor, poor things. Well done for being so brave. Despite everything, he is a very lucky boy to have such loving parents. And I’m sure he knows that. Keep being brave x

By: kristen

kristen — Sat, 18 Apr 2009 18:09:11 +0000

I have some catching up to do here, but I just wanted to say that my prayers are with you and your family right now. It is never fair for a child to be sick and we really do take our kids’ health for granted, or at least when that’s the norm for them we do. He sounds like a great little boy and I bet he will excel in so many ways. Please take care.

By: Tere

Tere — Tue, 14 Apr 2009 15:29:34 +0000

That you are this aware of the things he may miss out on and clearly committed to giving him as happy and normal life as possible makes me think that he will be o.k. It is your love and example that will help shape how he sees himself and his world.

By: Frugal Babe

Frugal Babe — Tue, 14 Apr 2009 06:33:47 +0000

I am so sorry that you’re having to go through this. My dad has Wegener’s Granulomatosis and lost his kidneys in 2001. He’s been on dialysis for eight years now, and is doing pretty well on it. A few years ago, he and my mom went through training to be able to do dialysis at home, six days a week. Each evening, they hook my dad up to the dialysis machine and watch a movie while he gets his blood cleaned. Until they started this program, he was on the standard, three-day-a-week dialysis at a clinic. The difference in how he feels is dramatic. He is MUCH healthier on the six day a week dialysis. If your son does end up needing dialysis, you might want to see if there’s a hospital near you that sponsors a six day a week program (my parents had to switch doctors and hospitals in order to find one that would do this for them, but it’s been very much worth it.)
Best of luck to you. *hugs*

By: mumof4

mumof4 — Tue, 14 Apr 2009 04:25:04 +0000

The grieving and anger makes perfect sense. I think you have togo through these before you can accept the diagnosis. And then the coping. But it is going to take time.
Stay strong.