Re: Not sure if I should trust my gut or not, help me please?!
Is your son hypotonic? Sorry, I can't remember all his health issues. If he is hypotonic I wouldn't be too stressed about the sleep and exhaustion thing, unless there is a sudden change and the change is not tied to his activity level. Kids with hypotonia have poor endurance and can sleep for longer periods of time.
There is a brain gut connection so if there is neurological abnormality (autism, malformation, damage etc..) the gut will often perform very poorly. I would be investigating motility problems and not just reflux based on his symptoms. I hesitate to write this cause I don't won't to freak you out but I know that some cardiac conditions can coincide with bad reflux but the connection isn't as strongly linked as it is to neurological issues.
Get the gut pain under control. Pain stresses kids out and relux can get worse when a kid is under stress. I find if I don't stay on top of the gut pain ds goes in a downward spiral. Reflux cause gut pain and the gut pain causes stress then stress makes the reflux worse which makes the pain worse.
Don't be afraid to ask for a Rx if need be. Sometimes Carafate is all that is needed but I also keep Tylenol with Codeine on hand for break through episodes that can't be controlled enough with meds to keep his pain level manageable. As an adult I have had reflux episodes so painful I could barely think so I can only imagine what little kids with bad reflux go though on a daily basis.
The only thing I can think of that causes excess urine is diabetes but I'm sure there are other possibilities I am not aware of as well.
Where there is smoke there is fire and your son's issues are casting a lot of smoke so I suspect there is some larger systemic problem whether it is genetic or metabolic I don't know.
Although mitochondrial disease would explain the exhaustion and mito disorders are notoriously hard to diagnose and with mito the more the body struggles with making energy the more the organs struggle to function. Mito can range from mild to severe. I have heard of some people not getting diagnosed with it until adulthood while some don't make it past 3 or 4 years old because their bodies can't cope.