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Okay waylon went to the neph yesterday... We are starting to tapper the pred down but it is going to take about 5 months to be off totally. My main question is will he relapse? I am praying he is in the small number of kids who don't relapse but I realize the odds are against that. He seems like he is starving all the time is this a common side effect of pred?
It's hard to know what will happen. My 6yr old son did successfully come off the pred and it's been almost 4mths now. In that time he has had a virus with fever/fatigue and a couple of colds. None has caused him any problems. We got signed off from our specialist just on Wednesday. There is no guarantee though that there won't be future problems and a relapse could happen at any time. I am a bit nervous about summer arriving (I'm in the southern hemisphere) with the mosquitoes around - I think it was mozzie bites in the first place that caused the NS, so we will see what happens.
My son was hungry on the pred. but as soon as we started to taper his appetite reduced. I ensured I always gave him high protein rather than carbs to help give a more full feeling.
Hi, layla(3) was on 6 tablets every other day and is now on 4 every other day neph hopes her to be off the pred by january, since she has had a cold and urine infection and no relapse.
But i agree with kiwimama you just cant tell what round the corner.
Good luck
around here, whenever the prednisone has to be restarted, it seems like he always has his head in the fridge. Pred really kicks in the hunger response... just one of those annoying side effects. It gets better as he tapers. He just relapsed last week and is back on 80mg/day. Had to re-stock with NS friendly foods because its hard to stop the feeding frenszy when he is 14 and almost 4" taller. Thankfully the kid likes to cook.
Hi, I feel like I am also waiting for something to happen. My son billy who is almost 7 (end Nov) is also in remission after being on steroids since May. He never had an appetite but as soon as he went on prednisone he never stopped eating... he'd get up when we were asleep and get yoghurts out of the fridge!! As soon as we started tapering him of the steroids he started to lose his appetite. He is now finished on his steroids since the end of Aug and is never hungry and has lost all the weight he put on through steroids. Every time he sneezes or says he feels tired my heart sinks thinking it is back. I just keep hoping that we get through to christmas with no relapse. He has had the flu jab and we are awaiting the swine flu jab to arrive in our surgery so he can get this too.
Hi my daughter was just diagnosed with minimal change/nephrotic syndrome this july. She is on prednisolone 15mg/5ml and started at 5.5 ml 2x a day. We tapered her down to 3ml 2x a day everyother day but she had a relapse. Again we tried and she relapsed. Currently she is on 6mls 2x a day everyday. In the beginning she was an eating machine. Its definitely a side effect from the meds. As she took the meds her appetite slowed down. My best advice is alot of fruit and veggies, otterpops, rice, chicken and cereal. Those are all low or no sodium. They also have "I cant believe its not butter" that has no sodium and my daughter loves that with her rice! Also for the veggies there is a low sodium ranch dressing that's made by Wish Bone called "Salad Sprtizers."
Hi my daughter was just diagnosed with minimal change/nephrotic syndrome this july. She is on prednisolone 15mg/5ml and started at 5.5 ml 2x a day. We tapered her down to 3ml 2x a day everyother day but she had a relapse. Again we tried and she relapsed. Currently she is on 6mls 2x a day everyday. In the beginning she was an eating machine. Its definitely a side effect from the meds. As she took the meds her appetite slowed down. My best advice is alot of fruit and veggies, otterpops, rice, chicken and cereal. Those are all low or no sodium. They also have "I cant believe its not butter" that has no sodium and my daughter loves that with her rice! Also for the veggies there is a low sodium ranch dressing that's made by Wish Bone called "Salad Sprtizers." Other side effects we have experienced are very puffy cheeks, hair growth on the face and back and lots of energy. Hope this helped. Best Wishes!
3+
Hi,
Jelani is starving all of the time. He is on 20 mg every other day. This is Jelani's 2nd time tapering after his May diagnosis. I do know that the appetite does go back to normal eventually.
My name is Drew, my son Quinn has had NS for about 4 years now. He goes on the pred. then off and everytime he has relapsed. It has been things like allergies that sends him back in. And yes, he would try to eat everything that wasn't nailed down. How may of us can really say no to those beautiful babies when they say thier hungry? Not me. We would stock the house with fresh friut and other healthy things to keep the weight controlable. He is currently down to 2ml a day and starting 1 ml 1st on Nov. It was the same thing last year, he was off the pred. by Thankgiving (and believe me we did give thanks) Only to relapse 2 days after Christmas. He then went back up to 17ml to start. I share you anguish, this is hard to deal with sometimes. I am a career Firefighter/EMT and my job is to help others and it is crushing when you can't help your own. Hang in there and pray that there will be a cure soon. Take care!
Drew165,
THANK YOU! As a past EMT myself and being in the wellness buisness, its nice to know I'm not the only one going through the "I can help others, but why can't I fix this".
To all,
I dont know how you all do it. Chris was 10 when all this started for him. Only a semi-finicky eater then.
How parents can manage with such little ones, who can't always explain how they feel and who can't always understand, you're all saints in my mind.
Waylon got up this morning and is very swollen.... but we did the trick or treat lastnight so maybe too much candy????
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