Published On: Tue, Dec 15th, 2015

Our Lives With Nephrotic Syndrome Written By Danielle Mantakoul

Danielle Mantakoul

I have been off the radar. Why? My youngest son Will has Nephrotic Syndrome where his immune system attacks his kidneys. He contracted it at age 3 after a simple cold just as his brother and sister had at the time. By aged 5 we had it under control after a long bout with steroids to calm his immune system.

nephrotic syndromeIn March of 2015 at aged 8, our specialist tells us it’s time to pull the medication (Neoral) considering he is having such a tiny amount, perhaps he is better? I did think this approach a little strange as kids who are lucky enough to grow out of nephrotic syndrome don’t tend to do so till their late teens.

That day is crystal clear. I remember leaving Westmead Children’s elated. My boy was now well, I don’t even recall feeling nervous about the days ahead with no medicine. When I got home, my husband however was not so positive, but I assured him the specialist was quietly confident he no longer had Nephrotic Syndrome.

Five days later my boy was in trouble. His immune system as it had done 5 years ago started attacking his kidneys causing him to leak copios amounts of protein into his urine. Here we go… the steroids game again, and don’t steroids love to play. Weight gain, depression, stomach pain, stunted growth, compromised bone density, the list goes on and there is no choice… we have to play. It is a difficult pill to swallow when you are giving your child medication that you know is so nasty to them, but saving their life at the same time.

Will has now relapsed 5 times since March needing ridiculous amounts of steroids to get him back into remission. He becomes highly addicted you see, and each time I would start to wean him bang, relapse, and back to the start of another high steroid dose. He now looks like a totally different child. He has gained 9 kilos in 8 months and has not been at school this term bar a sprinkling of hours. The high dose of steroids sent him into total depression, and on top of this, school was becoming too difficult as kids in the playground began to make fun of his weight and rounded face. It eats your soul when your child tells you kids are making a “fat face” at them.

Body image had become a big problem. Will and I were in the shoe shop a few weeks ago when he kept hounding me to leave. He is usually pretty patient when I am trying things on but was obviously most keen to get out of there. Once we left I asked him why. He hesitated and said “there were too many mirrors in that shop”.

Tears were becoming more regular at bedtime as he would constantly ask me, “when will I look like me again”? I was never quite sure what to say. By telling him soon I could be telling him an untruth as he had relapsed so many times in recent months and had to go back to high steroids, that I really didn’t know. All I could say is “it will happen”. Even that felt like a lie as we were being faced with threats from our specialist of further procedures due to so many relapses. Kidney biopsy, B cell reduction with the risk of activating a rare brain virus. We have been a whisker away from these procedures more times than I care to think about in the last few months.

As I write this I am sitting here surrounded by pieces of paper with dosage calculations. I have been constantly trying to work out why he keeps relapsing as everything the specialist has thrown at me so far has not worked. Last month I THINK I worked it out but time will tell. I think Will unfortunately needs a super slow steroid wean AND a daily dose. Kids on steroids with Nephrotic Syndrome tend to only have a dose every 48 hours so as it doesn’t stunt growth, but for Will I think he needs it daily. He has not grown for 6 months now, but I must keep in mind it is a small price to pay to get him well.Nephrotic Syndrome

A special thank you to Miss Piccolo Will’s teacher who instilled in those grade 3 children awareness, empathy, concern and understanding. She has made it possible for Will to now be happy enough to attend school of a morning as he feels most comfortable with his classmates because of this wonderful teacher.

A special thank you also to my friends and workmates at Larool Preschool. With Will so sick I had to take the term off which I have no doubt was an inconvenience. To those around me that would regularly get a hello at school drop off or pickup I apologise for my lack of manners, and most importantly to my friends, I have turned inward and am not sure when I will be back.

Today Will is doing well. He has now been in remission for around a month. But every morning, when it comes to testing his urine, I know we are not out of the woods yet. Any day we could be back where we started in March. The real test is still ahead, the day he comes off the steroid and his little body has to rely on the other medication he has to keep him well. If all continues to go well, I am envisaging that to take place around Easter 2016.

I often find myself wishing my life away these days chasing that next great reading on the urine stick. It is no way to live, but I know the worst thing I can do for Will is to stop living, stop smiling and stop hoping. So, I’m smiling and looking forward to Christmas with the kids… but under it all, wishing that Big White Rabbit would quickly come a hopping my way.

By Danielle Mantakoul
Copyright 2015

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  1. Julie Fielke says:

    Hi Danielle,

    I only just read this article as I was looking at the mummy weekly website. I just wanted to say I really hope Will, you and your family are doing much better. To will, a huge air hug little man 🙂

  2. Emma says:

    How incredibly difficult this must be for you and your family Danielle. I hope your little boy recovers well and goes into remission soon.

  3. Kerry says:

    Sending lots of hugs your way. What a roller coaster ride you, Will and your family have been on. Hope everything is smooth sailing from now on. Please know that I am here for you if you need anything. xx

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