Numerous Hospital stays

What do you mean by seizing? Sometimes I find that people are talking about things that I have but I don't know the official name for it! I know that lots of times something will happen to make me tired and then my body doesn't bounce back very quickly. When I don't want to eat normally one of two things is happening. Either I'm tired and don't want to chew, or my stomach is tired and and is still working on digesting the last meal! I'm sorry you, your son, and your family are having to go on this journey.

Hi Koltons mom, A mito mom told me about using Digestive Enzymes, she used them for her 8 year old daughter, "she didn't know exactly what they did, but her daughter would always ask for them." I went out and bought some, and it took away the pain in stomach, reflux, nausea, vommiting, bloating, and laboured breathing. (i will be forever grateful to her) Food doesn't just sit there for a long time anymore. It helps me with the delayed gastric emptying. Before them, it was a real struggle to eat, because you know how awful you feel afterwards. It was alot of tea and toast. With the digestive enzymes, i don't have any of those symptoms anymore, and i had them for 25 years at least. Another thing that some mito moms have found to be benificial, is reading up on Fatty Oxidation Disorders. I hope you find some answers soon!

Kolton's Mom, Sounds like our little boys have alot in common. Anthony has had his up and downs and sometimes it seems like we live at the hospital. Anthony had his g-tube put in May of 08. We also found an amazing Gastro doctor. With his help we have learned to understand what is going on. Eating for Anthony is a chore. It takes so much energy to do it, he use to fall asleep during meals after just a few bites. With Anthony I find that offering little snacks more often helps sometimes I just give him a little piece of watermellon or a piece of baked potato. Some times I will just put some raisins or something small out so if he feels like it he could eat it. So he doesn't feel like I am always pushing him. I do know the more fluids he gets the better he does. Less Fatigued, Nutrition I believe is the Key! There is no perfect answer and with Mito the lesson I have learned "Most of the time it takes a long time to see any positive progress." Remember you are not alone.

Anthonys mom, yes our boys stories seem to be very simuliar.Kolton just got his mic-key button put in on Monday and seems to be doing well with it (better than the NG tube!) I read in another post that your son was going to pre-school. We just put Kolton in 2 days a week, but after about an hour he really starts to get tired and anxious. He starts pulling at his shirt and wanting to go to the bathroom. Developmentally he honestly is only a few months behind, amazing since all of the hospitalizations. How is your son handling school? Kolton is just so use to crawling up on the couch during the day and relaxing..I just don't want to push him. As for eating, I do the same thing. I offer Kolton small snacks now throughout the day and it seems to work SOMETIME..lol I try not to stress over it as much! Thanks for the advice and support. Take care!!!