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  3. Nephrotic Syndrome

childhood nephrotic syndrome

  1. Hi, I have a 7 year old with this syndrome and wondered if anyone has a child of similar age that they would be interested in talking to my daughter?? I feel that not many people have heard of this syndrome and although it is upsetting for us parents, it is just as much if not more for the children as they feel like they are the 'only one' with this. Us adults have the ability to talk online but children dont have that.

    We live in Twickenham and i was wondering if anyone would be interested in their child and my daughter maybe writing or meeting??

  2. 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.

  3. 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

  4. 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!

  5. 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

  6. 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?

  7. 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

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

  9. 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...

  10. 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

  11. Hi Becky and jenny52, our case is somewhere in the middle. Prograph is working with us but we still have a couple of relapses per year. When she was first diagnosed with NS, and after one month, seemed to respond in prednisolone but days later proteinuria “knocked” again. After spending another two months in the hospital, an almost renal failure, a biopsy, combinations of medicines and treatments, we ended in the combination of prednisolone- prograph. During those years there were a numerous of doses large and small but we never stopped the treatment. Once we were so close to stop medicines, after almost a year without proteinuria that I thought “ok we did it” but I guess I was just being optimistic.

    We also have problem with the pituitary (hypophysis) gland which means that she is not getting taller adequately so she is also under treatment with daily injections.

    We also have a hearing problem but they didn’t tell me that it is connected with NS.

    We weren't properly informed from the beginning and we didn't know what we were facing. As for the attitude of the hospital’s personnel, let’s just say that they didn't deserve an "A" that is why she got so scared about the hospital.

    From my research I found that the treatment is pretty much the same but what really makes the difference is doctor's experience in NS and how he/she reacts in critical conditions.

    Did you find anything about food, I mean that might help?

  12. I think one of the hardest things was dealing with so many different docstors at the hospital and communication between them wasnt good. We already felt so stressed and worried as we had never heard of this syndrome before and were obviously very worried about our little girl.

    It seemed that the A&E doctors didnt rally know what to do because ns is a specialized subject. There is only one consultant at our hospital who specializes in ns and he never seemed to be avaliable when we needed him.

    Our first ever experience was awful as we had be sent to A&E by our doctor and the doctor we saw at the hospital wasn't child friendly at all and really upset our daughter.

    When we met the consultant from a specialized hos[ital she was excellent and we couldn't believe that we hadn't been allowed to meet her before now. she only sees certain patients who are frequent relapsers.

    At first we were to to avoid as much salt as possible as this would help ns but we were then told by this top doc that food doesn't make a difference, its a case of 'if they've got it, they've got it, there is nothing you can do to try and prevent it'

    As a parent it just makes you feel so helpless

  13. Hi becky and roula

    My expirience was like yours becky I took him to the drs gp as he was swelling and they first sent him away with piriton saying it was an elegiac reaction a few days later he just got bigger and bigger and ended up in a&e with renal failure I know it's silly but I often wonder if I have trusted my own instinct and it haven't got so bad before treatment weather he would have responded to treatment better Steven is also on a low salt diet his consultant has told us to keep him on it all the time he seems to think it puts less stress on his kidneys but we have been told diffrent things by diffrent dr have any dr/ consultants ever said what they think causes it they just told me they don't really know he is under a consultant at a special clinic now has been for a while as he has. Always had a difficult to controle condition his consultant is really nice but doesn't explain very much do your children tend to get ill a lot Steven seems to be ill all the time with colds er infections sick bugs he has just been diagnosed with an iga deficiency ( immune system deficiency) I have always put him being sick down to ns and treatment but now I'm wondering if this is causing a lot of his illness I spoke to the nurse over the phone but she just said dont worry about it but I'm a mum worry all the time be really great full if you could let me know about illness as I'm going to Speke to his consultant next appointment . With the ear thing when Steven was on prograph he had really bad problems with his ears he could hardly hear in one due to build up of fluid behind his ear drum prograph can cause problems with hearing after Steven came off it his ears got better might be worth speaking to the dr about becky dose your daughter just eat normally if so dose it not make a difference as its awfull sometimes with Steven not allowing him crisps and pizza ect .its the worst feeling when they don't relaps for a while and you think you have turned a coner and things are going to get better then they relaps . I think like you say as a mum you just never stop worrying about them just want to say a massive thanks to you both I'd got to the stage where I felt so alone and no one understood and it was so nice to find this post and know there are other mums going through this 2 who feel like I do Thankyou so much

  14. Hi Jenny, well our doctors gp was very good, he immediatley sent us to A&E but it was the doctors at the hospital that were awful with Lauren(well one doctor in particular) Lauren had never had any encounters with hospitals before so it was a daunting expereience for her(as with any child) we were told Lauren needed bloods done, the doctor came in and just said right bloods, started stabbing away no warning of the needle coming, no offer of anything before-hand such as cooling spray or cream. She couldn't get to the vien but no explaination to us or Lauren she just kept jabbing. It was awful, we had to tell her to stop then she got funny saying well if you don't think i can do my job properly......! so rude!! I think if it was a male doctor i would have been worried that my husband would do something stupid to him.

    eventually we managed to calm Lauren down and another doctor was sent to do bloods, by this time Lauren was absolutely terrified. her trust in doctors had completely gone.

    anyway, Lauren was admitted and when we went up to the ward we still weren't told what Lauren had, yet all the nurses up on the ward knew, they were like oh, did the doctor not tell you?? This really wasn't a good start.

    Lauren was admitted on the Monday and on the Wednesday was sent home which was quite worrying for us as she was on a fluid restriction and we had to measure any urine output. by the Thursday we had to take Lauren back to A&E as she just looked awful and was lying there saying her tummy was really hurting. when she was examined the doctor said we need to admit her again as we haven't got on top of this. I felt quite angry, why had they sent her home when she was still so ill???

    It was heartbreaking when they told us Lauren didn't say a word just tears rolling down her face.

    The next day she had to have a protein infusion through a drip.

    Like you, i felt bad that i had missed it for so long because at the beginning it was just her eyes that looked puffy, it was quite warm so we thought maybe it was hay-fever, we had also just got a puppy and were worried that she may have been allergic to it. It was her birthday coming up and I thought, oh i'll take her after her birthday. I should have just taken her to the doctors.

    When we spoke to the consultant from a different hospital where she went into detail with us about ns, she said you have to stop feeling guilty, the symtoms are often similar to hay-fever and many parents had thought the same. She said too that not much is really known about NS they don't know why you get it or obviously have no cure it literally is trying different treatments to find the best for your child. she was very honest with us about everything.

    Somethimes i think doctors forget that although they may see this syndrome all the time because it is their speciality, they forget that us parents don't know anything, we haven't heard of it before and we are the ones who have to watch our children go through this.

    Lauren was never an ill child then this came along, but weirdly enough she has manage to escape the majority of bugs/infections that have done their rounds at school. We have understood from the consultant that children with this are more likely to get ill as their protein is their immunity and if they are leaking protein then they are loosing their immunity. but also on the other hand we were told that although Lauren is well at the moment if she gets an infection it may cause protein to leak again leading to another replapse. Its so hard because every time something is going round at school, i start to panic that Lauren will relapse. Especially as she has two younger sisters so more chance of catching bugs.

    I am also glad to find people to talk to about this even though Lauren is in 'remission' the worry of it returning is always there.

    It sounds awful for your son tho, actually having renal failure, how was that treated?

  15. Hi I feel so sorry for you and Lauren that sounds really awful how the hospital treat you and didn't explain anything it must have been terrible for you and poor Lauren I wouldn't have blamed you for hitting them and can't believe they sent you home that's terrible . When Steven went in they where nice didn't really tell us much but were nice to Steven i just remember hearing renal faliure and panicing they treat him with steroid infusions and albumin infusions restricted fluid very similar to bad relaps .i know how you feel about bugs at school I honestly wanted to put Steven in a big bubble and must admit still do but I also want him to enjoy himself and be normal for want of a better word hope you understand what I mean and it's so hard sometimes you just want to protect them and want them to stay in remission and be better .i totally agree with you about dr they seem to see it from a medical point of view the emotional side isn't there and they just don't seem to tell you things although yours sounds very good now Thankyou so much for telling me about this I've felt so guilty for not taking him sooner for so long

  16. Hi I can understand your situation with your daughter because I too have nephrotic syndrome. I was diagnosed with it when I was three years old. The doctors gave me many steroids and drugs. They told my to get ready for I was going to die. But my parents started looking into natural medicine and remedies. They also put me on a strict diet. Basically brown rice and veggies all the time. I hated it. I never ate junk food or sweets as a kid but in the end it saved my life. Also all that I drank was water. I was pretty much a vegan for my childhood. But now i am healthy and I may drink and eat whatever I want. But I still do take precaution on what I eat though. I also drink a lot of water so theres no relapse. You might want to look into natural remedies for your daughter. Also kidney cleanses helped me so you may want to try that also. I hope this helped somewhat. Good luck.

  17. Thank you for sharing your experiences. We had similar moments of anger, disappointment and regrets too. The first doc that saw her swollen legs said that is due to the cold weather. I also feel that we lost valuable time in the begging but then we should do our best at the moment. Emily I will take your advice, to be honest although I am very careful with her diet I am not very strict. Did your parents find any natural medicine because I haven't? Your case reminds me a friend of mine. She is about 35 years-old now, she has 2 wonderful kids and no symptom or any other problem. She is just fine!

    We are also afraid of bugs at school, I would put her in that big bubble too jenny52 but I would make her life more difficult.

    Some kids made fun of her weight and height, she didn’t even want to go to school for that reason and so many other problems that occur in our practical life that I am sure you face too.

    jenny52 you mentioned the hearing problem, did the doctors tell you that is connected with prograph?

    Doctors are not sure for anything about NS so whenever we mention something or want to talk about it they ignore us and in some cases they make us feel idiots, that is what I hate most about them.

    Talk you soon.

  18. Hi roula yes it was connected to the prograph if you read the leaflet in the box it also tell you it can affect hearing I had problems with bullying due to his weight too he was so upset they are so brave they deal with so much

  19. Thank you for answer jenny52. I read the leaflet again, the first time was years ago and I forgot about the hearing problems that it might cause. Last Monday we had our scheduled appointment and I had the chance to talk about it. They don't have a similar problem with other children and they told me that they worry for much more other side effects. I will refer it also to our ear specialist. But the big question for me is, if it is really a side effect what we should do and will happen in the future. I am afraid the answer is not easy to find.

  20. Yes. I mean at the time when i was a kid they didnt have the medicine they have today. So my parents had to prepare everything themselves. But now they have everything already made so its no hassle really. So I was speaking to my parents the other day, i told them about your daughters incident and this what they said:

    1) Make sure she drinks a lot of water.

    2) Her diet needs to be a extremely low sodium, protein and dairy free diet. So nothing that has a lot of salt, isfried, no dairy products, no meat or fish. And if your wondering 'how about the calcium or protein?'. Well you can get protein and calcium from many vegetables and fruit. For example broccoli.

    3) She must do these cleanses(in order)

    Parasite cleanse, kidney cleanse and liver cleanse.

    Also when i did this as a kid my parents did the same diet so that i wouldn't be left out in a way. I mean cause it would be wrong for them to be eating a piece a chicken in front of me mean while i'm eating steamed veggies. So I think the best thing would be is too support your daughter. But yeah, no salt, dairy, protein or sugars as well. This is a very strict diet but its worth it. You will notice the difference in a week of doing it. Btw if you go and tell a doctor about this they are going to think your insane lol but anyways good luck

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