Nephrotic syndrome

[PercyPeanuts]

Does anyone have any experience of this? My child has just been diagnosed with this. I gather it is reasonably common but I had never heard of it.

They've prescribed steroids and antibiotics and will re-examine in a few days.

Thanks.

Hi Percy, my DD is 6 and was diagnosed with nephrotic syndrome in February this year. I too had never heard of it prior to her diagnosis.

DD was on steroids and responded to them very quickly, she was weaned off by the end of April. She has had a relapse this week so we have had to restart the same treatment, apparently relapses are common with NS.

Hope all is well with your DC and the whole treatment process goes smoothly, the initial high dose of steroids made my DD very unwell but she was fine once we started tapering down the prednisolone dosage.

I'd be interested to know what your lo's symptoms were?

My DD had very swollen eyelids, particularly in the mornings. We first thought it was caused by allergies. She also complained of frequent tummy aches.

GP tested her urine and it revealed high amounts of protein and we were referred to the hospital where she got her diagnosis.

Thank you - my lo has a damaged kidney and I'm wondering about the ways this might show in her.
Hope your lo has improved - its horrid when they are ill isn't it x

Thanks for the replies.

Sparkle, we're very similar to you. My DD is six too. She had had a swollen face in the mornings for a few days which was generally fine a few hours later but DH insisted on taking her to the GP. If I'm honest I thought he was fussing and it was an allergy or something. The GP was great, took his concerns seriously and sent them both to hospital where she was diagnosed.

She's now on steroids and (fingers crossed) her protein levels seem to be coming down, along with her swollen face. We're due to see the doctor again next week. Otherwise she's seemed, outwardly anyway, to be much her usual self.

I guess we're at the beginning of this in terms of her response to the medication and also the frequency of relapses. Do you know if there is anything we can do to help prevent them? Sorry to hear that your DD relapsed. I suppose at least this time you know what it is...

Stardust, I hope you get answers too. Such a worry dealing with children being unwell.

Sparkle, just re-read your second post. Apart from the tummy ache it seems as if we went through much the same process...

Hi. We are at the other end of this. My son is a teenager. He was diagnosed whilst pre school. Steroid sensitive. Kept relapsing. Never managed to get him off steroids so after (I think) about 18 months we ended up with him on cyclophosphamide. We were told it may give us a couple of years relapse free. That was over a decade ago!
Don't know where you are in the country but Guys and St Thomas were amazing.

Yes the renal team at evelina/st Thomas's fantastic

Wolfie, that's really encouraging to hear. Does your son still take medication for it? I understand that they expect the majority of children to grow out of it. Hopefully for you and your DS that's been your experience too.

Great to hear such positive experiences with St Thomas's. We're not far from London but so far I've been impressed with the consultant at our hospital, although I have only met him once! He's a consultant paediatrician with a specialism in nephrology. He was excellent with DD and with me and seemed to know his stuff.

So helpful to hear of your experiences, particularly when it doesn't seem to be anything that people know much about.

@PercyPeanuts
We were told there was a 95% chance he would grow out of it. After he didn't relapse again for a few years I was told the odds were even better for us.
He takes no medication. He is supposed to pee on a stick weekly (teenager though!) I do watch salt intake and ensure he stays hydrated.
It was a condition I knew nothing about. He was really very ill. One relapse we ended up at A and E with a BP of 200+ over an equally shocking number. It was a terrifying time.
He's fit and well and I hope it stays that way. We were told that if he's unlucky enough to relapse after all this time it should be easier to control.
Good luck.

Have you joined any facebook groups yet? Try the nest groups, and uk nephrotic gang

Relapses are pretty normal, especially first few years. Some will only have one episode but most have more. Most dont as such grow out of it, but might relapse very infrequently in adulthood. Its manageable and there are treatments for it, lots more than there were.

We were told (maybe given the particular type of nephrotic syndrome) that there was a 95% chance he would outgrow it.

Maybe. Older studies showed low relapses but the pattern is changing, or the research is more thorough. As you say, it depends, yes,the type but also the individual's personal path eg relapse more likely with frequent childhood relapses and multiple treatments, even with same idiopathic ns diagnosis. I felt I was given false hope(lies) at the beginning about average relapse rates in childhood, so I am staying pessimistic about chances of relapses in adulthood, the odd relapses is after all not such a big deal (this is how I keep myself calm)

Wolfie, glad to hear your son has not had a relapse for a few years, it has made me very hopeful at this early stage of our journey. Did the prednisolone have an effect on his overall growth? Did doctors ever discover the cause - MCD, FSGS?

I suppose the most important thing is that this disease can be monitored and controlled in the majority of cases.

Does anyone know of any relapse 'triggers'? I've read about gluten free/dairy free diets but I don't think this is backed up by scientific research?

He's predicted to be over 6 foot tall. I'm tall though.
No relapses in over 10 years.
No idea of causes or triggers.

My son is also very tall, despite years of pred. He would catch up on the inbetween bits. You need to check vit d if they have been spilling protein a lot, the legpains are often a sign of deficiency, but better to act earlier. Gp or neph can check. Relapses dont really have avoidable causes but you might see links eg christmas excitement, exam stress, upper respiratory infections. There are studies on uri link, the trial worked for us, prednos2.

Wolfie, yes that is very encouraging (although obviously some scary times too) but like Sparkle we're right at the beginning of this as well...

Painting, really useful to have your perspective too. Understanding it a bit better/hearing other experiences is incredibly useful at this stage.

DD's protein levels are now back to normal about a week after going onto the steroids but the consultant said she'd be on them for 6 months regardless as apparently some studies have shown that a long course of steroids with the first episode can help reduce the frequency of future relapses. We see him again next week so hopefully I'll be able to ask all the questions that I should have asked, but didn't think of, last week...

Percy that's interesting, my DD was only on pred for 3 months in total the first time. I did think it was quite short in comparison to what I've read online. She relapsed just over 2 months after stopping. Fingers crossed for no more relapses for your DD with a longer tapering schedule!

Wolfie and Painting, it's good to hear that steroids didn't have a massive effect on growth. It isn't a major concern of mine as DD is very tall for her age to begin with, but wanted to know what your experiences were. I'll have to remember to ask about vitamin D levels at next appointment.

Interesting about the longer course of steroids. After the first episode we never managed to wean off steroids. He would relapse the moment we stopped them. He was really not very well at all. Good luck.

It isnt common.
It affects 1 in 50,000 children.

Im an adult with this, diagnosed in December, i was also diagnosed have FSGS and IGAn.

Wish your little ones all the best

London, that must be a lot to take in. I hope you've got a supportive medical team around you.

Re steroids, we've been warned about steroid dependency too and I'm not clear if a longer course of steroids initially is likely to make dependency more likely or not. I guess it is a balancing act that the doctors are best placed to judge.

I didn't know about possible growth restriction from steroids. My DD is pretty small anyway, although within normal range. Again, I guess it's just one of those risks we have to live with. I will definitely ask about it next week however.

My ds is now 11 diagnosed at nearly 4. He is a frequent relapser so plenty of experiences of steroids, relapses and side effects! He has been relapse free for a year thanks to levamisole and is very tall despite lots of very long periods on steroids. Any questions please ask...

Thanks London, I hope you are well and are able to get the right medical support and treatment to control it what were your initial symptoms?

Tiredpigeon, a year of no relapses is great. Were there any side effects of levamisole? How soon was your DS introduced to the alternative treatment(s)?

My first symptom was swollen feet.

Done a urine test at the doctors and had protein overload.. Constantly leaking protein and blood since.

The doctors deal with children differently and often put little ones on steriods. Some which (like most things) have side effects, make sure your child has a good kidney specialist and regular blood tests.

Immunity is lowered, so they will pick things up more easily. And with swelling, they will often be put on a fluid restriction. Which can be hard, but ofcourse this isnt the case with everyone and dont just do this off gour own back, dehydration can be just as bad.
A diet with as little salt as possible is recommemed too....

Swelling and picking up bugs is the hardest for me. I got a bug, and vomiting for 2 days made my kidneys fail.

With children, there is a high percentage that they will go in remission and lead a normal life..
I do wish that for all your little ones.

The key is patience, and remembering that every day is different for a kidney patient. Some days will be sofa days, time to re-live the disney films x