I am totally and utterly pleased to say that ALL of Aden’s blood work has come back, we are fairly confident that we aren’t dealing with mito, there is some chance that it is partially due to a metabolic issue but nothing that is life threatening or huge. The only thing that is really abnormal blood wise is his Vitamin D level, he has been on a supplement which is a huge dose but hopefully it is helping, we will have more blood work to see.
Aden’s GI issues are still rampant and often out of control. He cannot control his stooling and he is having pain. What the doctors are thinking that he is dealing with is something called an Abdominal Migraine. I only know about this because of Zach and because we know a few others that have to deal with it. The simplest way to explain it is that it is a migraine that is presented through the abdominal area. This would be like pain, bloating, nausea, vomiting, being pale, wanting to lie down and not wanting anything to touch his stomach. We have noticed things on and off but never said much, however, when addressing other issues one of Aden’s doctors and I started talking about it because it is becoming more apparent. He has started to request certain clothes to help, even sometimes asking to wear inappropriate clothes because of the comfort. In his case he prefers athletic or sweat pants, they are just the stretchy waist band and don’t apply the pressure in the middle of his stomach like the ones with buttons do. He often will come on and change immediately because he needs “a softer pair of pants/shorts”
This is something that while we hate it, it is OKAY~ It isn’t something that has a GOOD treatment but it is one that has some treatments to at least try, it is one that is often outgrown (or people learn to cope with well), the bad thing is that goes into migraines (headaches) however the good thing is that once we learn the patterns, symptoms and pains we can help him with these. He already gets migraines some and for our family that isn't a shock. Adam, Zach and I also all get Migraines. I had to give injections to myself at one more, Adam is on a preventative drug, and Zach took the only med that was on the market for his weight class.
The hardest thing for me is that I can’t seem to help much, the other thing is pull-ups and clothes and knowing what to do about them all. It is a grieving that I would have been able to handle but combined with other things it is something that I am learning to deal with