Has anyone had an experience in their sons having red or brown urine? I spoke with Healthlinks today and they suggested that maybe he had a urine infection. But because he is on steroids, he may not feel the side effects of it because of the steroids and having a stronger pain threshold. The one day Joshua had red urine and the next it was a brown color. It didn't last all day with each color, but only once each day. He didn't have anything in his diet that had changed to cause the coloring either. We are having him pee into a jar and if it is discolored, we were told to put it into the fridge so we can take it to the doctor. They weren't, and I'm not either, sure if it has anything to do with the steroids or the increase in pain threshold as I mentioned earlier. Thanks for any suggestions.

Naomi

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We have experienced something similar this summer. But, it turned out that our son had drunk a fruit juice that had in it beetroot extract for colouring.
Another cause may be ingestion of too high quantity of vitamin D. How much vitamin D is Joshua taking?
We found at the local pharmacy sticks for testing urine. You can find out if it is really blood in urine or it is another thing (like something in the diet ) that is causing the red/ brown colour of the urine.

Andreea
Naomi,
I know that several people have experienced this and somewhere there is a message board chain about it. Search 'brown urine' and see what you come up with. I don't recall if it was this message board or the old one.

Good luck! Lori
yes this happened to us at lease 3 times when my son was younger. i would say around 6 yrs old. They did a bunch of blookwork and after our pediatrician checked with a kidney Doctor to make sure he wasn't missing anything they said that sometimes when these boys are younger there is blood, or brown urine because of the amount of muscle that is being destroyed. I think it is called Myoglobinuria. I can't remember if they wanted us to get it checked out each time or just watch it to make sure it clears up.
He was not on steriods. Interestingly, my other son who does not have dmd has had this happen to him a few times as well. They can't figure out why this is happening for him except that each time it has been after soccer practice.
Thanks for your suggestions. Joshua takes only 400 IU of vitamin D each day. That was what his doctor had recommended.

Donna, when I called Healthlinks one of the things they asked was if he had been hit in the groin or not. I guess that may cause bleeding in some cases. It may be a good idea to watch him closely the next time he has practice.

Naomi
My doctor told me that while you are on steroids it is easier to get any type of infection.
I've had numerous urinary tract infections.
I drink a glass of cranberry juice & drink lots of water everyday to prevent them from happening again.
My son Tim who is 10 has had numerous episodes of red or brown urine. Each time there were no other symptoms. After ruling out infection the neurologist and ped finally concluded it is myoglobin not hemoglobin in the urine and is likely a result of muscle breakdown. Most of the incidents occured while we were out of town just to add inconveniece and added stress to the situation. We still have to check each time for infection but so far that has never been the case. The ped sent me a link to an article discussing this issue in DMD. I'll see if I can find it and post it.

Ellen
This discussion is so timely, as today my son went to the ped for a urine check after starting deflazacorte 11/1. His first two checks were normal, but today urine showed protein and blood (even though it LOOKED normal), Does anyone have any idea about this? I was not aware that deflazacorte had a side effect like this. Any info ro thoughts would be appreciated.

Regina

Ellen Wagner said:
My son Tim who is 10 has had numerous episodes of red or brown urine. Each time there were no other symptoms. After ruling out infection the neurologist and ped finally concluded it is myoglobin not hemoglobin in the urine and is likely a result of muscle breakdown. Most of the incidents occured while we were out of town just to add inconveniece and added stress to the situation. We still have to check each time for infection but so far that has never been the case. The ped sent me a link to an article discussing this issue in DMD. I'll see if I can find it and post it.

Ellen
I spoke with Joshua's geneticist and what she said is that unless the urine is tested with a 'dipstick', many times they can't detect anything at all. It's not actual blood they are looking for, but the red blood cells. We see her tomorrow so we'll see how it goes.

Naomi
Sure enough it is myoglobinuria. She said it can come on from too much exposure to cold, dehydration, or excessive exercise. It's not commonly seen until around the age of 10 and Joshua turns 6 next month. If it happens too often though, it can coat the kidneys and cause problems such as infection or failure. Now we know! Thanks for everyone's input.

Naomi

This is a new issue for our son, Connor, who is 6 year's old.  He's on Deflazacort, growth hormone, pepcid to protect tummy and now Strattera for ADHD. We have now seen this issue with him twice in the last two weeks.  Each time, no associated pain nor fever when he's urinating with reddish-brown color.  Thankfully, I had previously seen this post so that I wouldn't freak out.  The first time this happened, the urine analysis at the doc's office was clear.  This second time was not so lucky.  The physician's assistance was very concerned about the amount of blood and protein found in the urine.  They sent it out for further analysis and we were able to have blood drawn with a full CBC and metabolic panel.  We'll know more today or tomorrow, I hope.  Dr. Parson's, Connor's doc at Children's, thankfully did not seem too alarmed.  Connor is an active boy and no matter how much I try to moderate his activity, he does what he wants to do.  First time this happened, he had had a very active week.  But this second time, not so much.  So I hope we don't have to push him too much to slow down. We've been greasing the skids with the idea that he needs to not push himself so much AND to make sure he drinks plenty of water throughout the day.  However, he's very strong willed and wants to do as much as he can.  I really cannot blame him.  So, how many other boys have experience the blood in the urine?  How many have turned out to be anything more than just the myoglobinuria?

 

Myoglobinuria is a recognised complication of Duchenne muscular dystrophy (DMD), but has only once been reported in ambulant boys on corticosteroid therapy [Dubowitz V, Kinali M, Main M, Mercuri E, Muntoni F. Remission of clinical signs in early Duchenne muscular dystrophy on intermittent low-dosage prednisolone therapy. Eur J Paediatr Neurol 2002;6(3):153–9.]. We present three prednisolone-treated boys with myoglobinuria and in two cases this was recurrent. All three showed improved motor performance in response to the introduction of corticosteroids. The greater activity of steroid-treated individuals may place their dystrophin-deficient muscles under greater mechanical stress, predisposing to further muscle fibre damage and consequent myoglobinuria. Families and physicians need to have an increased awareness of this possibility and of the appropriate management of myoglobinuria.

 

Hi Lisa,

It was me that posted the original question about this awhile back. The things is that there is no test pad for myoglobin itself on the urine dipstick, just hemoglobin (that is how the blood is detected chemically). So it seems like it is blood in the urine and some medical staff may freak out and not understand where the blood is coming from, etc, but it's really a false positive and coming from the myoglobin of the muscles. But myoglobin filtered by the kidneys CAN be damaging, thus the need to dilute it and flush it out when this happens.

Don't beat yourself up, it's something that happens. We used it as a lesson to Simon that he is in charge of his body, and that while he can't feel at the time like he is "over doing it", this is the sign (or proof) after the fact that he probably was doing too much, and that he should take breaks and drink lots, and that if it happens again and we are not around then he is responsible enough to know that he needs to flush himself out and let someone know if he starts to feel pain or headache or dizzy, whatever the symptoms are. He is 11 now, but we started this when he was 7.

I am a carrier, and have had myoglobin in my urine too several times as a teenager over doing it with sports or hot weather work, but before I knew I was a carrier. I've heard of other totally healthy people having it occasionally too. A bit scary, but it makes sense now.

It seems to be one of those things (like malignant hyperthermia with inhalant anesthesia) that the docs know can happen, but that no one has done any big studies on so they don't know the prelavence, thus my original question. Another case of us parents having to be the experts for our kids.

;-)     Andrea

Andrea,

Did they tend to do blood work with your son when he had these incidents?  Connor's liver enzyme levels were very high - 4 times higher than when he was originally diagnosed.  It makes me wonder if this is also a sign that the Duchenne progression for Connor is changing.  Does this mean we are starting to see the pendulum swing to more damage and therefore reaching a plateau of his physical capabilities? How does this impact usage of steroids and growth hormone? 

 

Thank you for the pointers on how to talk to him on this.  I believe this will help significantly.

 

Liisa

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