Our neurologist says he doesn't have it because one of his lab tests came back normal. The third time. The other two times it was not normal. No idea why. I have done enough research to know that the lab test that came back normal is not a reliable indicator of mito. Lots of people with mito come back in the normal range. I know several moms who have kids with mito. Three have told me that they think Doodlebug has it. So for now, we are kind of stuck in limbo. We do need to find out though because there will be additional medical issues if he does have mito.
We do know now that he has a sensory processing disorder (SPD). (You didn't know you were going to have to have a medical degree to read this post did you?) What is that? It means that when his body gets information through his senses the information gets scrambled on the way to his brain. Take, for example, hearing. Children with SPD do not have issues with their hearing. The ear works just fine. But when the child hears a sound and the ear transmits that information to the brain something happens to it. Do you remember the game 'telephone' we played as a kid? All the kids sit in a big circle and whisper a message from one child to the next all the way around the circle and by the time it gets to the end the message is totally different from the one that started. That is a lot like what is going on. A child may be hyper-sensitive to sound and being in a lound environment (like the mall) may physically hurt them. Or they could be hypo-sensitive and unable to respond to someone calling their name because they just don't register the sound over other background noise. This same thing can happen with any or all of the five senses. And most kids are a mix of hypo- and hyper-sensitive. This explains why Doodlebug generally prefers really spicy foods (the extra flavor is what he needs to really taste anything) but something about biting off a bite of food throws him into a tantrum. He is hypo-senstive to taste and hyper-sensitive to the sensation of biting.
This explains a lot of his quirkiness. He is just reacting to his world. And if we can figure out what he is reacting to and help him with it then we can end a lot of his behavior problems. One of our lasting and frustrating issues was his refusal to walk when we needed to. He can walk all over the house and backyard, but if I need him to walk from the car to the grocery store he freaks out. He falls in the parking lot and screams. Not fun. We often have people stop and stare or ask if he's okay. One day by accident we realized that he can do this if he is pushing J Bug in the stroller. How odd. Then we played around and realized he can also do this if he is wearing a backpack with a couple of pounds of weight in it. The weight on his back or the weight of pushing his brother settles him and keeps him from being overwhelmed and melting down. It took us 9 months to figure that one out.
We are making progress. He is talking a lot more. All of a sudden he is starting to know his colors, letters, numbers and shapes. We finally figured out that if he is sitting up straight in a chair his attention span is at least four times longer. He can walk into stores and church with minimal fuss. He now calls me "Mommy." Well, actually he calls me "Mom-meee!" but I love it. I have waited a very long time for that. We figured out that eating and drinking dairy causes him to have behavior problems. He no longer has dairy in his diet and his behavior is much better. He's not where he needs to be, but he's not where he was either. We have come a long way and have a long way to go yet. He is also a fantastic big brother. He plays with his baby brother, brings him bottles (usually empty, but he's working with what he's got!) and loves to hug him. Unfortunatly hugging often turns into steam rolling over the baby, but J Bug is one tough baby so it works out.