Nate will be four next month, where has time gone? Quick reminder. Nate was diagnosed at 8 months old with Hirschsprungs disease. He had a pull through with about 2/3 of large intestine removed. There were complications that lead to an ileostomy.He had a reversal at 11 months due to a prolapse (lot 6-10 inches of small intestine). He did okay after but still had troubles passing stool. At about 18 months we tried botox. It seemed to work well but with each new set of botox it worked less. The 4th and 5th time it didn’t work so we have stopped doing them. Nate has had EC at least 3 times sine his surgery and likely more. He suffers from daily bloating and sporadic vomiting. Which brings us to a month ago.
A month ago Nate got hand foot and mouth. Thankfully a mild case. However since then his body has been… well… acting off. It’s hard to explain. After HFM he started getting better for a few days. Then he got a fever, vomiting and diarrhea as well as bloating. His surgeon suggested putting him back on flagyl, He started to improve. The fever went away appetite and energy returned, after a few days the diarrhea cleared up. Then the diarrhea came back on and off and he vomited sporadically. He didn’t look sick but he wasn’t acting well and was still bloating. I started tracking his bloating by measuring his belly. At completely empty with no bloating his bely goes down to 51.5cm. Over the last 3 weeks the trend has been that in the morning Nate’s belly is at about 54cm and at night bloats to somewhere between 58 – 61.5cm. He looks pregnant. He almost never complains of pain. I don’t thin he even knows if it hurts. It is almost all gas.
Okay so Friday Nate’s appetite was down again. He refused to eat any diner and then threw up on an empty stomach (after vomiting belly measured 61.5cm). He was tired so we put him to bed and he was okay for the night. Then yesterday he woke up and began vomiting again and was lethargic. Enough was enough so I took him to Sik Kids ER. They did x-rays blood work. They started an IV because he was begining to dehydrate. The bowel showed dialation but not much stool. The blood work was fine. Nate finally stopped throwing up and was able keep food in. Sowe were sent home by a very baffeled doctor. We will be returning to do an upper GI contrast study. The ony thing Nate had yesterday was a little gatorade, apple juice 2 small freezies, 2 peices of bread with bp and 1 digestive cookie and by the time he went to bed he was bloated to 58.5cm.
Today Nate is energetic again although small apetite.
I am at a loss. Any ideas what might cause so much gas? Why he is bloating? Tests to ask the doctor to do? Any ideas at all? I feel so bad. It can’t feel nice being that bloated. In one day he will bloat up to 10cm. I have been measuring my other sons belly daily as well for cmparison and is he bloats more then 2cm he cries his belly hurts.
Sorry this is so long and thanks for reading any an ideas.