Gastroparesis

well we started off the week doing really well, he loved his pediasure, we saw his new GI specialist, completed all our lab work then the vomiting started. It appears that Liam isn't tolerating his new formula or any food at all right now. This is the struggle of this disease. Thought I would take this opportunity to share a little about gastroparesis.

Gastroparesis: the word translated means stomach paralysis. the American college of gastroenterology defines it as, "a digestive disorder in which the motility of the stomach is either abnormal or absent. In healthy people, when the stomach is functioning normally, contractions of the stomach help to crush ingested food and then propel the pulverized food into the small intestine where further digestion and absorption of nutrients occurs. When the condition of gastroparesis is present the stomach is unable to contract normally, and therefore cannot crush food nor propel food into the small intestine properly. Normal digestion may not occur." (GI.org).

Gastroparesis can be caused by a mechanical obstruction, a biochemical disorder, after traumatic abdominal surgery, but most cases are idiopathic (unknown cause).

Food can stay in Liam's stomach for up to 4 days (that's the longest I've seen so far) he ate some pasta and 4 days later threw up undigested chunks of pasta. Having a stomach that doesn't function can lead to severe nausea, vomiting, malnutrition, weight loss, and poor quality of life. We are in unique situation in which we were diagnosed early (at 11 months old) which is not always the case and  because Liam can't tell us if he's feeling sick. We just keep feeding him until he relentlessly vomits, like he has been this week, I can't even imagine what's that like.

There is no cure for gastroparesis, it is a lifelong chronic neuromuscular disorder. The treatments they have for it are also suboptimal. We are on all the medications available for this disease and he still
Vomits uncontrollably. There are a few children's hospitals around the country that have recently started placing pacemakers in the stomach to make them contract and have really good success. Liam is too young for this but it's nice to see there are doctors out there trying to come up with something to help these poor children suffering from such a terrible disease.

At times I feel helpless, it is extremely frustrating to be doing everything right then have to sit by your child's crib all night long while he continuously vomits. Watching fearful that he will aspirate, turning off his feeding pump causing him to loose even more precious calories. It is especially frustrating sometimes because this is essentially an invisible disease, and when your not there day after day living the struggles you would think he's totally fine (which don't get me wrong I am incredibly grateful for that) it's just hard to explain sometimes when everyone says "but he looks so good". Most of the time I just smile and nod and say thanks I know, even though in the inside I am completely torn apart.