Does anyone know if this is a common problem with duchenne boys? We are trying to figure out if this is what our son has been experiencing. He is 9 years old and for the past year, he has had 7 occasions where he feels faint, turns very pale including his lips, sick to his stomach and then claminess and sweats break out. A few occasions when he was active others not so much. Most times, plenty of fluids have been given through out the day as well and has eaten too. He is on a low sodium / low sugar diet like most duchenne boys and cardiologist here thinks that his sodium may be too low. Not sure... We are getting a test kit to check his blood glucose next time it happens but I wanted to get other opinions on if this is common and maybe suggestions from other parents.
Tammy - I think you may mean "hypoglycemia," or low blood sugar? While corticosteroids do alter glucose metabolism, there is no evidence that patients with Duchenne have an increased incidence of low blood sugar. Even though he has eaten, he may not be eating enough or regularly enough (many children need 6 small meals/day, rather than 3 larger ones); you may want to discuss this with a nutritionist. I would also consider checking his blood pressure - has he started on any new medications that might affect this? This is unlikely, but something to consider. You said he drinks plenty of fluids, but rarely do children drink as much water as they really need. i would talk with the nutritionist about this, maybe, as well. Sodium will affect blood pressure as well, so checking sodium may be worthwhile.
Starting around that age, I (a parent of two boys with DMD, not a person with DMD) started having similar events. It's never been properly diagnosed in me, but in my case it's most likely a Vasovagal Syncope. (http://en.wikipedia.org/wiki/Vasovagal_response)
In short sometimes I faint or almost faint. It started around that age and continued into my teens when it mostly went away, though it has happened occasionally as an adult. Generally speaking, it's not serious and is linked to certain triggers. For me it seems to be mostly long periods of standing and being too warm. It could be something similar in your son. Definitely get his sodium checked and if possible, keep an eye on his blood pressure. Mine is consistently low or on the low side of normal.
If it is what I described above, there's not really any danger to him, other than injury if he falls when fainting. In my case, I've learned to recognize the symptoms and get myself situated before it progresses. If I can sit and put my head down, it usually is enough to stop the symptoms.