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Increasing Fatigue/Heart Concerns

My son, Bradley has DMD and will be 16 at the end of this month. He has been more fatigued the last couple of months. On most nights, he has being going to bed between 7pm and 8pm. On Friday, he was very tired and did not want to take his melatonin. that he has been on for a few years and 6mg for over 2 yeas. He went on to say he wanted to stop melatonin altogether because it was making him too tired at school. So he hasn't had it since Thursday night. This has never been a complaint before in all the time that has been on it.

Today was a quiet day. We went to church this morning and spent the rest of the day at home. He did have to walk a longer distance in the parking lot at church because we were unable to get a close parking spot, but he really didn't complain about the distance. I was surprised when he came to me a little after 6pm and said he was tired and ready to go to bed.

Yesterday, we went shopping at Kroger and we walked around quite a bit. I asked him if all the walking was hard on him. He said the walking was not hard, but he just felt out of breath.

I noticed a small decline when he started back to school after the summer break in August. Then in September, he had an MRI which revealed a 9% decrease in his Left Ventricular Ejection fraction (from 56% to 47% despite being on carvedilol and lisinopril). He was started on a half tab of spironolactone in addition to lisinopril and carvedilol due to the decrease.

But his fatigue seems even more increased now. He will get an echocardiogram at the end of this month. Upon the suggestion of medical team at Cincinnati Children's, we got a local cardiologist for him.This cardiologist upon hearing he had a normal 24 hour Holter monitor ordered by Cincinnati Children's, wanted to try an event monitor. This was done in January and only showed PVC's when he felt heart palpitations and pushed the button. I'm anxious to see how things are later this month on the echocardiogram. I don't think it will show as much as the MRI would, though.

Maybe it's just that he is slowing down because of the DMD, instead of a further decrease in heart function as I fear.

Does this sound like a pattern suspicious of even more decreased heart function?

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Permalink Reply by Janine on March 7, 2013 at 1:56pm

Has he had an overnight sleep study?

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StaffPermalink Reply by Kathi Kinnett on March 7, 2013 at 6:29pm

Lisa -

this is Kathi Kinnett from PPMD. Has Bradley seen pulmonology recently? Has he had a sleep study within the past year? Is he on night time Bi-PAP? If so, he may need his settings evaluated. His fatigue is likely not due to heart function, but is most likely do to hypoventilation during sleep and disturbed sleep due to hypoventilation. I would let the cardiologist know his symptoms, but I would also speak with the pulmonologist; he sounds like he could use a pulmonary evaluation.

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Permalink Reply by Lisa Jones on March 7, 2013 at 10:59pm

Kathi, He is going to Cincinnati at the end of the month. He hasn't had PFT since February, 2012, but he is scheduled to see the pulmonologist and for PFT. Maybe something has changed there. He usually does very well, and last year he did so well they thougtht they should wait another year to see the pulmonologist and do PfFT. A lot can happen in a year, especially with him being in the teens.

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Permalink Reply by Lisa Jones on March 7, 2013 at 11:02pm

He is not on Bi-PAP and it has been awhile since he had a sleep study.

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StaffPermalink Reply by Kathi Kinnett on March 8, 2013 at 8:30am

Yes, I think that's your next step. I think I would call the pulmonologist and give them the heads up, see if you can get a sleep study scheduled during your visit. You're right - a lot can change, and very quickly, during adolescence and young adulthood. The good news is, improving his night time ventilation will make him feel so much better during the day~

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Permalink Reply by Donna Cicardo on March 8, 2013 at 9:11am

Lisa, my son has been having those same symptoms. our pulmonolgist said it could be sleep apnea, going for sleep study, PFT dropped a little. I would still ask about getting an MRI, it could be his heart not pumping enough blood, so poor circulatoin of oxygen can make him tired.

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Permalink Reply by Jason Darienzo on March 8, 2013 at 8:01pm

hi Lisa

I think he need a BIPAP. One tip a bipap uses two pressures, one for inhale and one for exhale. The exhale pressure should be as low as possible to avoid CO2 problem. The other option is volume ventilter with a mask like a bipap to sleep and if needed with a pipe to use in the day.

You should try consulting Dr. John Bach at Univ. of Medicine in New Jersey, Newark and read his website.

He's the best guy for noninvasive mechanical ventilation for neuromuscular disease.

http://www.doctorbach.com/

Try e-mailing him I think he will answer?

bachjr@umdnj.edu

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Permalink Reply by Lisa Jones on March 8, 2013 at 9:21pm

Thanks eveyone for your input.

I talked to my son today about how he is feeling. He says he is not as tired since he stopped taking the melatonin and he thinks he is sleeping better. Since Tuesday, he has been staying up later and does seem less tired. I do still have my concerns and I think he should have a sleep study soon.he hasn't had a sleep study since 2010. I'm going to give the pulmonologist a heads up about the situation.

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Permalink Reply by Donna Cicardo on March 9, 2013 at 8:45pm

Lisa, our pulmonologist said yes melatonin can make you feel groggy the next day. he says if you do take it take it at 6:30 if your going to bed at 9 pm. 2-2 /2 hours before bed. maybe that might help him. pulmonologist said its safe to take it but not more than 3 mg. hope this helps. we did switch to that time and he's not so tired in morning.