childhood nephrotic syndrome

Hi Becky,

I also have a 9 year old daughter with nephrotic syndrome. She is under treatment for 7 years now, I can perfectly understand how you and your daughter feel. Unfortunately we do not leave near you, but I found your message, looking once more for something new, and I thought that would feel better to think that you are not alone. It took us years to start talking each other without feeling nervous about it, but I am confident that we are all going to fight it.

I would like to share our experience, help or be helped.

Hi my son is 10 he has had treatment for 6 years now I have tried to keep some things from him but now is at an age where he wants to know about what is wrong with him I think it would be great for him to talk to someone around his age unfortunately we don't live near ether as a mum I would also like to talk to parents going through the same thing

Hi jenny I followed the same path, tried to keep things from her, but as they grow older they realise that there is something different about them and I think that it is a mistake to deny it. The worst part is for the parents to really admit it, if you know what I mean, you first have to manage your feelings and reconcile with the idea, and then you can get ready to answer his questions. They need to hear the answer, simple answers and nothing but the truth. Consider your self surrounded by doctors without anyone to give any explanation! Just standing there thinking "why me?" I wasn't able even to spell the word NS but for her sake I did it. There was a time that I was sicker than my daughter and that was not a nice picture for her condition. I found that site a few days before, it is hard to find similar cases, although it is a relief to talk with others, of course when you are ready to talk.

As a mum, I never stopped looking for answers, better treatments, experienced doctors......it is like a thorn in heart but you know that must keep it inside of me, for my daughter the world must go around like everybody else.

If you ever feel the need to ask or say anything please do not hesitate, I hope I would be available!

Hi roula Thankyou so much for answering me its so nice to talk to someone that understands I'm trying to explain things to him little by little I just don't want to scare him it's hard he goes through so much if there is any thing you want to ask me or anything I can help with or just want to talk please do is your daughter on retuximab infusions my son seems to have lots of side affects

Of course you must be cautious, I think that we should aim to make them feel comfortable with the situation and see doctors as those who are making their best to help and not as a threat. This point took us a lot of time. Everytime we went to the hospital she was terrified. Not that she feels ok now but at least she is doing better.

I have no idea about this treatment.If you would like, you can tell me about this treatment with retuximab infusions? I suppose that there must be a special reason that doctors decided to apply this treatment. Unfortunately my daughter is partialy cortico resistant so we use a combination of drugs.

What I was looking for is for an highly experienced doctor or hospital in NS in UK that I could take, maybe, another opinion.

Do you have frequently relapses?

Thankyou I think like you say it's excepting thing yourself your poor little one being scared of the drs and hospital on top of everything else and yourself must make the pressure your under even worse as you say we do what ever we have to for them smile and reasure but inside that's far from what we feel my son luckily has always been ok with the hospital and his consultant is really good he really likes him my son i think cortico is steroid resistant ,my son is also he has been on other drugs as he cannot be on less than 45mg prednisolone without relapsing he has continually relapsed since he was first diagnosed it initially took over a year to get him into remission he had cyclofosfmide and steroids he was then put on prograph (tac) and steroids he managed to go at the most 5-6 months without relapsing and then too soooo long to go back into remission last year his dr suggested retuximab it's an infusion given at the hospital over several hours it works by killing B cells ( has in some cases some quite scary side affects ) it has worked better than any of the other 2 line treatments he even managed 4 months without any medication first time for 6 years was heartbreaking when he relapsed again I really thought we had turned a corner he had a second infusion in December but due to a bad relaps oct he is also on steroids I'm hoping he may get another few months without medication again and his consultant has now suggested giving him this every 6 months the down side is he is ill a lot on this just bugs ear infections colds ect but my son is also iga deficient so think this contributes to this 2 my sons dr is a paediatric nephrologist he dose treat patients with nephrotic syndrome I live in the uk are you in the uk sorry if this is a silly question is your daughters condition similar to my sons dose she relaps a lot and have you tried any treatments that you have found really affective

Hi sorry forgot to put I will look up top specialise in nephrotic syndrome and the hospitals they work will get back to you

Hi, im so sorry i have just seen these messages as they had been sent to my junk box in hotmail.

since i put the first message up my daughter had become steroid dependant. Because of this we were able to meet a specialist called Dr Deal who works with ns at st marys hospital in London.

She was ever so good, she spoke to Lauren about things in a child friendly way. Lauren was then sent out to play and we got an opportunity to speak to her on our own and discuss all our concerns in detail and about NS in gerneral. She explained it so much better to us and put us at ease.

WE discussed further treatment for lauren and steroids were not working. The Dr put Lauren on a drug called Cyclophosphamide for 8wks, in which Lauren had to be monitered every 2 wks(bloods and doc reviews)

But since finishing this drug Lauren hasn't had any symptoms of ns, We couldnt belive it. We still have to dip test 3 times a week as there isno guarantee that it is over for Lauren as the Doc said this drug works differently for different people. Have you heard of this drug before?

What treatments have your children had that have worked/not worked??

When Lauren was diagnosed, we had never heard of this before and felt like we were on our own with this. but now hearing how long you have delt with this makes us feel lucky at the moment...

Hi becky yes my son had cyclophosphamide about 3 months after he was first diagnosed as he has always been steroid dependant / resistant but unfortunately relapsed a few months after but his dr did say for many children they are symptom free for a long time hope your daughter is one of them it's so nice to hear the treatment has worked and she is doing well . he my son has also been on tac (tacrolimus) for a few years they tried this after but it did not work . i have never thought of asking the dr or nurse to speak to my son about ns that's a really good idea I will ask next time we are at clinic Thankyou .my son is always with me at clinic and the dr has never suggested him going out so I could Speke to him there are nurses that are really good but they don't really explain much he dose go to a diffrent hospital though my son is on retuximab infusions now they do seem to work stoping him relapsing but he dose seem to be ill a lot with colds bugs ear infections ect I was the same had never heard of it before and even when I speak to people now no one seems to have heard about it if you want to ask anything please do I'm really pleased about your daughter will keep my fingers crossed for you