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so worried

Posted , 3 users are following.

jemj3ms
jemj3ms

hi, i have a little boy who is nearly 3 now. he recently started suffering from his tummy being really bloated, and his eyes lids were very puffy. i took him to gp who said his eyes was just an allergy and told me to bring in a poo sample, which i did. since then the symptoms became worse and gp sent me off for some blood tests. on tuesday evening, i noticed that his testicle was swollen and had a lump, so instead of going back to gp i took him straight into a&e and he was diag with nephrotic syndrome. we have only just been discharged from hosp and he is on a very high dose of steriods. im just wondering what happens (if anyone knows) if this condition keeps on coming back. the consultants havent really told me what the next step is if the steriods do not help..

thank you

0 likes, 11 replies

11 Replies

  • lewisanderson42
    lewisanderson42 jemj3ms

    Posted

    Hi Jem,

    Sorry to hear about your little boy.  That sounds like me 33 years ago.

    I am currently taking an immuno suppressant drug called MMF, and have been relapse free for about 3 years.

    When i relapsed, i had to take 40mg (as a child) or 60mg (as an adult) of prednisolone for about 10 days.  That would stop the loss of protein in my urine.  After that it took about 2 or 3 months to slowly reduce the dose of prednisolone (steriods).  I sometimes continued on a maintenance dose of 10 or 20mg alternate days

    Everyone said that i would grow out of the condition.  Sadly for me that did not happen and i continued to relapse annually on average.

    Steroids work.  They subdue the immune system so that the kidney's normal function begins again.  MMF is a steroid sparing agent - an alternative with less exciting side effects.

    I always had to be patient with the steroids.  They always worked though.  And over 33 years i have learnt to handle the illness and not let it dominate my life.

    Let me know if you have other questions.

    Lewis

  • valerie94214
    valerie94214 jemj3ms

    Posted

    Hi Jemj3ms. I am upset that you have not received more support from the consultant. This is a serious condition and it is a very worrying time for you. They should take time to explain all that lies ahead for you and your little boy. My grandson was diagnosed when he was about 18months old after contracting Chicken Pox. The doctors thought he had an allergy until they decided it was NS. Since then, he has relapsed at internals over the years. He is now almost 19 and just suffered a relapse again due to Hayfever. It appears that any virus, throat infection and so on, can trigger off a relapse in his case. He has to check his urine to see what the levels are regularly to see if NS has returned. The doctor should have given you a supply of these 'sticks' to dip into his urine every day until the protein return to normal levels. Once they have, he is back in remission and can slowly reduce the steroids. As a young man, my grandson is now on very high dosage of steroids, so is suffering the usual swollen face and body. Hopefully, this will subside now that he is in remission and the steroids are being reduced. There is a lot of information of the web about this problem and I urge you to read it to get an idea on what is ahead. There are several types of NS, and depending on which or he has, the outcomes vary.  Although my grandson has not yet done so, some children do grow out of it, so do not give up hope. If necessary, make a nuisance of yourself and insist the doctors make time to explain what the situation is in the case of your little boy. I believe there is strength in knowledge, so find out all you can.  I hope things go well for him and that he is one of the lucky ones that grow out of this condition. Good luck. 
    • lewisanderson42
      lewisanderson42 valerie94214

      Posted

      Hello Valerie,

      I have been on a steriod sparing agent called Mycophenolate Mofetil MMF for nearly 4 years, and i have only relapsed once since i started taking it.  The steroids used to drive me mad.  I have come to accept that immune suppression is what works in my case, and MMF is working.  There are other steroid sparing agents however their side effects seem worse than MMF. 

      I would also suggest that your grandson has regular bone density scans, if not already having them.  At least once every 2 years.  The steroids have a bad effect on bone density, and i now have osteoporosis (very mild) and need to take more drugs to deal with that.  The doctors have put me on high doses of calcium however i wish they had done this 15 years ago.

    • valerie94214
      valerie94214 lewisanderson42

      Posted

      Hi Lewis. Thanks so much for that information. I have not heard of it,and will pass this on to my grandson and his parents to see if they have been offered it. I am not aware he has ever been offered a bone density test either! My other concern of course, is that long term steroid taking may result in sterility, so any alternative is welcome I think.  Thanks again.
    • lewisanderson42
      lewisanderson42 valerie94214

      Posted

      bully either the consultant or GP for a bone density scan.  Steroids are not good for bones.  A calcium supplement like Calcichew D3 is necessary.  Mine was left too late and i'm now taking Alendronic Acid to prevent bone loss and worsening osteoporosis.  Hopefully in 5 years there should be improvement, especially as i'm only on 5mg of prednisolone daily in addition to 1 gram twice daily of MMF.
  • jemj3ms
    jemj3ms

    Posted

    hi lewis, im glad you are now in remission. this is such a horrible condition. my little one hasnt been to well over the last couple of days. had to take him back down the hospital yesterday as he developed a rash. the consultant didnt think it was much of a concern and let us go. today he has seems to be swelling up even more, and he still has high levels of protein in his urine. he has been on the steroids for 6 days now, how long is it before the steriods start to work do you know? and how long have you been on MMF for?                                                    Val im sorry to hear that your grandson is still suffering from this. the consultants have given me some info, but to be honest most of it has gone over my head. we have a consultation on wednesday so i should be able to find out more. thanks very much for getting back to me                                               
    • valerie94214
      valerie94214 jemj3ms

      Posted

      Hi Jem, I am sure Lewis can give you his first hand experience to help you, but I would have thought that your little one should have responded to the steroids by now. I am not surprised you are worried. As an over-anxious Gran, I know how you feel. If he also has a rash, he could have an allergic reaction to the drug, so perhaps the consultant will suggest the MMF that Lewis is using. I have passed on his information to my daughter in law and she is going to investigate it tomorrow and suggest they try it when he has his next appointment. Do not give up on this. Keep insisting the consultant listen to your concerns. I hope all goes well Wednesday.
    • lewisanderson42
      lewisanderson42 jemj3ms

      Posted

      normally about 10 days.  There was the occasional relapse where i had left it too long before starting a high dose of prednisolone, and the steroids took about 14 days to take effect.  It was only when i was about 20 that it was clear that i needed 60mg of prednisolone to deal with a relapse.

      Watch fluid intake.  Kidneys are not functioning properly.  There were times when i was limited to a litre a day.

      What i understand about the illness, is that my over active immune system flares up in response to something (eg. flu) or even if it just gets bored however, it is my kidneys that bear the brunt of it.  My kidneys struggle to do their normal function, so i start retaining fluid while they allow protein to escape.  Always notice it in my feet and ankles first.  Press hard, and it takes a while for the indentation to bounce back.  I also notice a lot of froth in the toilet bowl - that is the protein loss.  I guess that the big concern is that the fluid retention puts extra pressure on blood vessels, and leads to increased blood pressure and extra pressure on the heart.  Keep your son resting as best as possible.  Please note that these are my simple observations and logical thoughts.

      After about 10 days, testing urine with Albustix will show that the loss of protein is reducing from 4+ to 3+ and so on down to negative.  When protein loss is at negative, a reduction of the dose of steroids can begin.  It normally takes a couple of months to complete the reduction.

      The steroids are also associated with "Moon Face".  I don't know why but long term use makes your face swell.  The fluid retention follows gravity, and starts from the feet up.

      My mum was great, while at the same time probably being as worried as you are.  I was tested for food allergies - there is something called the York Test for food allergies.  I cut out lots of foods, including dairy, in an attempt to limit any stress on my immune system.  I think it worked and for a long time between ages of 4 and 10 i was very heathy and relapse free.  I was also given doses of cyclosporin and cyclophosfomide as alternatives to prednisolone however neither of those really worked.

      between ages of 10 and 30, i had various doses of prednisolone, and even some long periods in remission.  It was not until about 4 years ago that my consultant offered me Mycophenolate Mofetil (MMF / Cellcept).  I had been offered Tacrolimus by another specialist however he didn't like that.  These are steroid sparing agents.  On their own they will not control a relapse - you still need steroids to deal with a relapse.  The MMF is given to transplant patients to stop their bodies rejecting new organs.  It's all about supressing the over active immune system.

      I regret that i have never found a cure. I was told that i'd grow out of it.  The doctors are good at treating symptoms where there isn't an obvious cure.  They are looking for cures but as yet there are none that are known to work.  The immune system has had a jolt of some sort - maybe chicken pox - but the fact is that the immune system is now over sensitve. 

      I take a multivitamin supplement and cod liver oil pill every day.  I have an active lifestyle and honestly i feel great.  I am not sterile and my wife is about to have our first child.

      Be patient with the steroids.  They need time, especially when a relapse has got a hold as this one sounds like it has.  I eventually managed to catch relapses very early, by testing my urine weekly and watching closely for the signs.

      I am not the best at typing and writing coherantly and would be happy to chat if you end up with more questions.  Things get easier and we all learn to live with it.

      Best wishes - Lewis

    • valerie94214
      valerie94214 lewisanderson42

      Posted

      Thanks so much Lewis. I have copied your email in its entirety and emailed it to my grandson and his Mum. I will buy him some Calcichew D3 tomorrow. Thank goodness for Forums like this!
  • jemj3ms
    jemj3ms

    Posted

    thank you very much
  • jemj3ms
    jemj3ms

    Posted

    thank you lewis, you have been a great help
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