While most of you don't hear from me in forever, I'm busy reading my email and studying the mito forum on yahoo. Being a little fly on the wall of this forum has yielded more information that I gained all summer doing google searches.
Friday, Will again complained of random hearing loss and pressure. I really thought he just was being non compliant with his medications and his allergies were an issue. Well, he actually cried over his ears hurting when his little sister shrieked into them, so I decided to take him in. I fully expected he had at least fluid in his ears, but instead, his ears were perfectly normal. And he passed a quick hearing test. Really. No explanation as to why the hearing issue. Saturday, he came to me after his infusion and said that he was having a hard time hearing again. It just didn't make sense, but I had this growing fear that we were looking at a mito issue.
Today, on the forum, they were discussing Meneire's Disease...headache (check), pressure (check), transient hearing loss that worsens (check), unstable balance (check). Dizziness. (check) Oh, great. Degenerative. (What with mito ISN'T degenerative????) Eventually leads to deafness.
No cure. But the treatment is a low sodium, low fluid diet. You're kidding, right? He's on medication to stabilize his blood pressure that requires him to retain sodium, he's supposed to take sodium tablets, and he is supposed to drink a gallon of water a day and receive a 2 liter infusion each week.
Am I jumping to conclusions? Maybe. Is it a little too real? Yep. He gets an infusion and he has hearing loss.
Nothing with mito is easy. Nothing. How much more can a 13 yo take? How do we even deal with one more thing?
Oh, Lord. I believe, but please...help my unbelief because right now, I just don't know how on my own to manage mito, much less this. I've never hoped for me to be wrong as much as I do at this moment.