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as i looked in the pictures of kids with NS, my daughter's face (u can look at my pictures to see her...) is much bigger and her face really change...i cant help but cry when i looked at her old pictures, so much change for a 3yo kid...and also she use to be a very confident kid and now she dont want to go out ..she just watch tv all day...
Don't be discouraged! My daughters face blew up like a balloon while she was on prednisone. She went from being a petite little three year old to being a chunky monkey in just a few months time!! We tried not to make mention of it to her at all so luckily she never seemed to notice or be affected by the change in her face. People would comment all the time about what huge cheeks and what a cute face she had and it would bother me MUCH worse than it ever bothered her. I felt like I needed to explain immediately that she was sick and on medication that made her face look like that. My husband would tell me all the time to "stop it" and that people just think its cute and not to worry so much......and he was right!! Fortunately, by the grace of God, Emma has been in remission since the end of last year and her face has gone completely back to normal. To look at her now you would never know that a year ago she looked like she was holding food in her cheeks like a chipmunk.
Try not to worry! The "moon face" will go away once she is able to get off the prednisone! I will keep you and her in my prayers for a speedy remission!!
Hi, yes the moon face is completely normal. I know how you feel its horrible to see your child change in front of your eyes. My son who is 6 was diagnosed with NS in May and within a few weeks of taking steroids gained so much weight but the main thing for him is his moon face. He is very concious of it as he is older then your daughter. I don't think its any harm saying to people your daughter is on special meds if they keep staring. Believe me she probably doesn't notice as she is so young. My son has started to wean of his steroids (40 mg every other day) and I notice his face doesn't look as bad. Be strong and your daughter is so pretty even with her chubby cheeks! take care.
hello to both of u, and thanks for your replies...i will also include both of u and ur kids in my novena... may God always be with u...
I also see such changes in him when he is Nephrotic. It saddens me also, because he looks so different. I know exactly where you are coming from.
My daughter's face has changed so much that the Nephrologist she is being seen by was afraid that she has become to skinny. He even had the dietician come in...She is well within normal for height and weight!!! I once saw a picture of twin girls one had NS and the other did not. It was so weird to see, they didn't even look like identical twins. Rest assured your beautiful daughter is right there. Good Luck!!!
AmosB
i also know what you are talking about. my husband 2yrs ago was very nephrotic. he gained 50lbs within a week. he looked honest to goodness like the michelen man! i lightly put my hand against his ankle with no pressure and my whole hand print was imbedded into his ankle! i never saw anything like it! but, he went on meds like lasix he had to take over 500mg to get his swelling down. than of course battling what they thought was mcd but now we know it is FSGS. and now he keeps having flare ups so back onto the prednizone along with the cyclosporine and up his swelling goes! so just hang in there! it is very scary and frustraiting seeing their appearance change but with prayers and patients it will work out.
I didn't look in the mirror for a year, but once she is off the steriods her face will return to normal. I was lucky steriods don't work for me. They are evil!
It's normal, When some one has FSGS or other form of Kidney Desies they retain a lot of water, or at lest I did... Or if they are going threw Steroid treatment they swell up. I know it's hard to face, BUT YOU HAVE TO BE STRONG not only for Her but for your self!!! You should try to make her want to go out side and play. Thats what my Parents did. Try to find some thing she likes to do, and do it with her out side. My Dad moved the TV out in to the back yard... I ended up playing on the swing set while watching tv. The point is Try any little thing and stick to what works.
My daughter was 10 when she was diagnosed. She was in her fisrt year in the middle school and her face and tummy blew up. I felt so sorry for her. Kids stopped talking to her and other kids whispered behind her back about how come Kenzie is so big. I had one of her friends tell me that a lunch lady at her school stopped her and asked why Kenzie looked so big. That made me mad. I ended up talking to a teacher about that. I don't think an adult needs to approach a child to ask questions about my daughter. My daughters face did go down but not to completely normal. She keeps relapsing. As a matter of fact she is still on the prednisone and she relapsed and that never happened before so I'm so scared right now. I sit and cry while I'm here at work. I'm actually taking my daughter somewhere else for a second opinion. I don't know what else to do but there is a reason why she keeps relapsing and nobody is figuring out why. I'm sorry for venting this on everybody but I'm so upset right now. I'm so scared right now.
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