Scrotal swelling/pain on Prednisone

Hi all, I know this may be a bit personal, but for the parents with little boys with FSGS, did any of them complain about scrotal pain? My 6 yr old has been on high dose Pred for almost a week and I have noticed some scrotal swelling. Today, the school nurse called b/c he was complaining about pain down there when he walked and when he goes to the bathroom. Just wondering if anyone else had the same problem with their child. I feel like I've been rushing him to the Dr. every other day and I'm trying not to overreact if I don't need to.

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Scrotal swelling is common for boys as is labial swelling for females. It was the worst part for me as a child when i was hit with attacks. The swelling gets so bad, the skin will pull and cause burning when urinating. I also heard somewhere that painful urinating can be caused by potassium levels.

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My son didn't complain of pain, but his scrotum and penis did swell up A LOT. I phoned the hospital to check it was all normal and yes it was. Once the pred kicked in it started to drain away. Due to gravity it was worse towards the end of the day. If he's in pain, perhaps get him to lie down as much as possible to allow the fluid to move up a bit.

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I am in Clemson, SC.
I have entered our son in a LONG term research study at NIH. They are looking for other also. Ifyour cild qualfies they pay all expenses to Bethesda, MD, and enter them into this study

It is not experimental meds. It is al long term tracking of our children, their disease, it's process and progress. It is worthy of your time!!

Let me know if you want the info.
Heather2

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Ok, this prednisone crap sucks! We had to take Zion to the ER last night b/c his scrotum was the size of a water balloon and he was so painful. They did an ultrasound and saw edema in his scrotum as well as free fluid in his abdomen. They say it's likely d/t the pred and low albumin, but his BW last week showed his albumin was up to 2.4 (the highest it's been since diagnosis). I just can't stand to see him feeling so miserable and I don't lnow what to do for him

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Oh, and Heather 2, I would like the info for the study. You can email me at alisansharp@comcast.net. Thanks

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Hi Alisan,

I know it is so frightening watching what is happening with your son. Our son's scrotum has swollen like that a few times (he is 6 yrs old & was diagnosed with NS 2 yrs ago). Once the pred kicked in, it did start going down. Unfortunately it takes time. His Neph suggested I put a "harness" made of very soft cotton (I used a soft t-shirt that I tore up) around that area to relieve the discomfort and avoid too much stretching/stress of the delicate skin area. He was to lie down and I also put diaper cream on his groin area to stop the rubbing and redness. It seemed to help him alot. I was told that once the albumin levels go up that the edema would start clearing up. It did. Be strong. You will get through this. My thoughts are with you both.
4myangel

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Hi, my son billy was diagnosed with NS in May of this year (he is in remission now and is free of prednisone for the time being). He was diagnosed in our local children's hospial on a Monday and by the wednesday (after being on 12 prednisone tablets a day) his scrotum was the size of a small balloon and almost transparent. We went into hospital with him and thank god we did because this is one area where the swelling may not be able to go down by itself. Billy was put on an albumin drip to reduce the edema especially on his scrotum. I would definitely recommend you bring him to your local hospital asap. Please let me know how it went. Take care

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Spoke with the nephrologist and he said to elevate the scrotum. Not the easiest thing. He's an old schooler and said that a study he published 30 plus years ago showed that lasix/albumin treatments can actually worsen kidney function, so they only do that as a last resort. OK, so he just has to suffer I guess for the time being. I just hope this resolves quickly. I feel terrible for him.

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4myangel - How did you create this harness for your son's scrotum? It is still very swollen and his underwear is too tight. I need some creative ideas to give him support. Thanks.
Alisan

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My son was actually hospitalized earlier this year because of severe scrotal swelling (he had massive adema all over, but his scrotum was HUGE). The swelling all over was affecting his ability to breath and eat too. They admitted him and gave him lasix/albumin to help eleviate the swelling because they were concerned about infection (his scrotum was so large the skin was cracking). He was in the hospital that time for 9 days and when we left his scrotum was still not normal sized, but much better. I should mention too that he has the genetic form of FSGS so the prednisone was totally not ever going to work for him anyway, so they took him off of it.

It is very difficult to see your child so uncomfortable and I wish there was more that could be done to help but it sounds like your neph doesn't want to do the lasix/albumin so it'll just be one of those things that time will make better.

Best of luck to you!

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Well, after 1 week of missing school, Zion's scrotum is larger than ever! The neph finally saw it for the 1st time today and decided to start him on oral lasix. If that doesn't work, guess we'll have no choice but to hospitalize and do the albumin/lasix infusion. I'm praying the oral lasix works!

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Hi Alisan,

First - my sincere apologies for the delay. I have not had access to the computer for a few day. How is your son? I hope you are holding up ok. As for the harness - I simply took a X-large,very soft 100% cotton t-shirt & cut it out so as it would be long enough to go under his scrotum (covering it loose like a cup - or a loose jock strap) & wrap around his hips where I could tie it. The material literally cradled the scrotum. Be very careful when you are putting it around this area as it is extremely sensitive, especially with the amount that the skin has stretched. I made sure that the material (again) cradled the swollen area, but loosley as I didn't want it to be held up too much (unnatural & uncomfortable too I would imagine - it's just to support the extra weight). The material also helped the groin area because the scrotum was so large it was rubbing the skin of the groin. So I was simply putting a barrier between the two with the material. The hospital also told me to put a diaper cream/zinc on the groin area to help the redness & swelling of the groin. I hope this helps. Oh, I also put his older brother's underwear over the harness - this way he could walk somewhat & not be embarrassed too much about it. He kept telling me that the harness helped him feel better. Please let me know how he is doing & if this helps. My direct email is trychi3@gmail.com if there is anything I can help with.
I'm thinking of you.
4myangel

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