Thursday, May 19, 2016

Diagnosis unknown

Having an older child on the spectrum I am pretty familiar with issues that involve eating or lack there of. When Dominic was a lot younger he had a lot of issues with textures of food. We realized he would pretty much only eat something if it was crunchy. Over the years he's gotten a little better about what he'll eat but back then it was pretty stressful. Fast forward to about 2 years ago. Ukiah was about 6 months old and we decided to go ahead and give solids a try. We decided to start out with some avocado. We weren't too successful with our first attempt but he was only 6 months old and nursing was still going strong so we weren't worried about it.

As time went on we continued to try a variety of fruits and veggies. Eventually he started trying things but would gag with every bite. I knew gagging was a common thing with babies learning how to eat so I wasn't too worried about it at first, that is until it didn't stop. Time after time we tried to feed him and gagging turned into vomitting. We became concerned and reached out to his doctor who wasn't too helpful. We decided it would be best for us to find a pediatrician. At this point Ukiah was around 1 year old and still not eating. He also started having severe tummy pain and was only pooping about once a week.

His new doctor turned out to be really great. She referred us to the children's hospital so that he could be seen by their Gastroenterologist. Not long after meeting with her we were scheduled for a biopsy of his esophagus. Then came the blood test, and then the barium enema, and more blood tests. All the while he's still not eating and on a good amount of daily laxatives that aren't helping. I didn't know a child could scream the way he does when he is in pain. We've tested for Hirschsprung's disease, celiacs disease, they've checked his thyroid and even talks of a tethered cord. He also has therapy inside and outside of our home. He will be evaluated by a whole team of doctors at the children hospitals feeding clinic this July in the hopes that they can figure something out. He's lost a little weight but not too much at this point  thankfully.

After over a years worth of procedures, tests, and doctor visits he has become terrified of anyone or any place that looks like a doctor. Over a year of not knowing what is wrong with my son, why he won't eat, and watching him fall to the ground and scream in pain is about more than I can take. We have a long road ahead of us but I will not stop fighting until they can tell me what is wrong and how they are going to help him.


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