Mito Awarness-Day 4

All about the gut!

Let's start off easy. Asa has food allergies. He's allergic to dairy, soy, and nuts. I've toyed with this because he doesn't have a huge reaction, well, not an anaphyaxis reaction. He just gets a belly ache and is miserable and it's not fun but it's not deadly. I stopped toying with this, however, when I hoped that he could get off his reflux meds if he stopped his aggravating foods. His tummy just felt so much better that we've mostly left him off them. This is easy enough to do because Asa gets 99% of his calories from formula. He takes 4 8oz cups of Elecare Jr. Vanilla per day. He will try more foods than ever but he just can't eat enough to keep gaining weight without the formula. Every so often I get on a big kick about switching him to food but it back fires with lots of puking and weight loss.

We are just thankful that he started drinking the formula from a straw cup and trying new textures. This keeps us from using his feeding tube. When Asa was 4 months old he was so malnourished that they put a tube into his nose and down to his belly. Using this tube proved that he could gain weight he just had to eat and not refuse EVERYTHING! The tube was removed 2 months later but Asa still would refuse to eat and at 9 months old was only taking in 8-9 oz of formula per day! This time they put a tube straight into his belly called a G-tube. It was such a blessing! No more fighting to get life saving nutrition in him. Today, we don't use the tube much. Occasionally for meds, when he's sick we use it for hydrating him but I can't remember the last time we fed him with the tube! It was a long journey and we won't likely take the tube out but if you need more details about our tube journey, just ask.

Now let's get ugly! Asa has a horrible time with poop! If it isn't too loose, it's too hard. We've tried tons of meds and interventions but usually he deals and takes care of the issue pretty well on his own. The neds all made things worse in a different way. We do use enemas when the going gets tough.

Asa also pukes and gags a lot. He is maxed out on reflux meds. We've chased down nearly every test to tell us what's going on. We've let out some pretty invasive stuff because the only option is surgery and we aren't doing that right now. I think we've all gotten pretty used to the puking now. And it isn't a daily issue like it was in the past. I think he just has a sensitive stomach and there isn't much we can do about that!

Hopefully that gave you enough detail but not too much GI info!

Tomorrow, we'll talk about treatments....or lack thereof!