We are half way thru the yearly specialist follow up. Last Monday was developmental medicine. This past Monday was cardiology. Yesterday was GI. To be fair, we see GI every 4 months so this was more of a regular appointment than a yearly check up.
To recap, the dev ped said Asa has probable autism secondary to the mito. I need to call and set up appts to figure out the next step. I got his clinical notes on the way to our GI appt.....not the best way to start the day! The cardio appt was great and we don't have to go back for 2 years! So on to GI yesterday.....
Asa has lost weight again and he weights 28lbs. This puts him right at the bottom line of the growth chart. He is 35". He'd make a perfect 2 year old! Asa's appetite has been on a decline and I started replacing all fluids with formula. This still wasn't enough. And it would be easy to just fill him to the gills with formula but even without a ton he is gaggy and drooly and pukey. Life is no fun...for him or us....in that state. We've always just upped the meds and never really checked out why this is happening. Soooo, next Friday we will be at Vandy at 8am for a Gastric Empty Scan. Asa will drink some formula laced with contrast. He'll then have xrays taken at certain intervals to see how the contrast leaves his tummy. We suspect it'll be slow. If it's too slow it'd explain why he is still so gaggy. Then we can try different meds or different feeds. If it's normal he'll probably have a scope later.
On Tuesday we head back to Vandy for the neuro/genetic appt. Then Friday we'll go back for the scan. After this we'll be done with the appts....except news ones based on the autism stuff. Anyone else tired?