We have seen this as well in our son Ben, 5. It happened twice before diagnosis at age 4 (so he was not yet on steroids) and twice after diagnosis (on steroids). After we were aware of dmd we were told to immediately begin aggressive hydration if it occurred and that we needed to seek medical attention if the urine did not clear up within 3 urinations. Fortunately, every time it cleared up by the time he had to go to the bathroom again. Very scary. And, yes Andrea is correct to not beat yourself up....I know I have struggled with it. Ben is just starting to learn when to take a break though I often am the one reminding him to do so. It is sometimes difficult to find that fine line of letting him be a 5 yr old while protecting him from muscle damage. I do not know if it has anything to do with progression, but do please post if you find out any more information.
No Lisa, we never did any blood work for the myoglobin, but since those "liver enzymes" are also in muscle (that's why our boys have high levels in the first place), it just goes along with the muscle damage from the over-use and/or too little hydration. Like CK levels, you can't really take the "liver enzymes" too seriously or expect to use them to "track DMD progress". The levels can fluctuate crazily. They really are not that useful for us.
I don't know if Connor is on a plateau of his capabilities at age 6, but I think it's safe to say that steroids definitely stall progression for a few years compared to not using them and letting nature run it's course without any medical intervention.
Brown pee can be scary, but I try to look at it from the view that the kids feel good and strong enough to be doing stuff that they otherwise might not be able to do.
A therapist pointed out to me that perhaps when we were telling Simon "don't you think you better take it easy", ( because he is as stubborn and feisty as me), that he took it as a "challenge" to show himself and everyone else what he could do and certainly was NOT going to take it easy. She suggested that until he got the idea of personal responsibility for his own body, that we simply order him to take a breather and a drink of water, letting him know that it was not an option. It didn't take many times of this before he was saying things like " I'm having fun now, and I am not tired, but I will save some energy for later when we _____ (fill in the blank with some other fun thing of life).
As expected, Connor's urine analysis culture was negative for infections but positive for blood. His liver enzymes were high of course. With everything else being in good order, the neuro doc is certain this is the muscle breakdown. She basically reiterated what Lisa Burke indicated in her last post here. I am so happy to have you all to help me with your experience an knowledge.
Dear parents, I need some advice about mioglobinuria. My son is 3,5 year old. Around already 3 weeks he is having a dark urine. Our doctor neurologist suggest us to giving him much water and to slow down daily activites, but and after that his urine is always dark in the morning. How to solve this problem, I think it takes too long.
Thanks in advance,
Marija - My guess is that your 3.5 yo son is very active, and that this dark urine is most likely due to myoglobinuria. Encouraging him to drink water and to slow down his activities is the best advice. if this continues, please let your medical provider know - they may need to check his kidney function just to be sure that everything is ok. other causes of dark urine, or blood in the urine, can be kidney/bladder infections or kidney stones. The risk for stones is greater in older patients, and not very likely for a 3.5 yo. Infection might be possible and is diagnosed through tests.