We left the hospital with Silas eating during the day and running formula through the NG tube at night. The NG tube stayed in a couple weeks, and then we were left with just regular food. Again I was hopeful. Maybe Silas’ colon was the problem all along, and maybe with the Myralax and anti-inflammatory medicine everything would be fine. But, my hopes would again be dashed. It was one of the many times when I felt my life verse should be Proverbs 13:12, “Hope deferred makes the heart sick.”
I again began the difficult process of determining which foods were bothering Silas the most – this time without formula to fall back on. GI #2 did another marker study a couple months later. With the new medications, everything was at least moving through his colon now. However, I soon discovered that anything that contained fructose was really bothering him. The diaper area (front and back) would become red and the skin would start to peel, his colon would stop moving again (2-3 days), and the screaming would get worse. I shared this with GI #2. He did a hydrogen breath test to check for fructose malabsorption. It was normal. GI #2 ran several other tests (including a sweat test for cystic fibrosis), but couldn’t find the source of the problem.
Silas was still in pain often and having those terrible screaming spells. The good thing was that his worst times of day were generally first thing in the morning and right after nap time. I say it was good because once we got him going in the mornings, we could usually get out and do a few things before nap time. After nap was generally not a good time, so it was difficult to plan much in the evenings because we never knew if we’d be able to get him out the door. We were also in a bad cycle of him trying to eat and it making him sick, which would make him not be able to eat for several days, and once he felt better, he would want to eat again, and the whole cycle started over.
Here’s a list of symptoms that I made for one of his doctors during this time:
· Abdominal pains – mild to severe, usually daily
· Sleep disturbances
o When he’s not feeling well, he has trouble falling asleep and sleeps in a little ball, with his knees drawn in like he’s hurting, even in his sleep.
· Swelling in face – around eyes, cheeks, and/or lips
· Something goes on in his mouth. He will complain that it hurts and feel around it with his tongue all day. Not sure if it’s a sore or swelling.
· Chronic runny nose and/or cough
· Fevers that can become very high. Have gone up to 105.8. As an infant, usually 103-104. Now usually 101-102.
· Constipation and/or diarrhea
· Rashes – on face (red cheeks); general dry, rough rash on back/stomach
· “Private parts” turn red and hurt. Skin sometimes becomes raw and peels. (Usually after he’s eaten fruit)
· Red and irritated around rectum.
· Won’t eat
· Sensitive to light and complains about eyes
· Changes in temperament – When well, he is very happy and content. As he gets worse, he becomes more and more irritable.
· Unable to focus on tasks
· Periodic spells of crying/screaming (like someone is stabbing him to death). Starts at 10-15 minutes, goes up to 30 minutes, maybe an hour if he’s really bad. Does not want to be touched. Must leave him alone until spell is over. Then, he’s exhausted and just wants to sit with you for a while.
· Something happens with his hands and feet – especially during the screaming spells. Rubs them like something is wrong – though I’ve not seen a rash. I have to put him in socks or footed pajamas because he will rub the skin off his feet and leave raw, bleeding areas.
I refused to accept the idea that there was nothing that could be done for him. Over and over, I had gotten rid of every symptom just by putting Silas on nothing but formula. I was determined to get to the bottom of this.
Here’s a picture of Silas the day we took out the NG tube. We went to the fair later that day. He had fun for a while, but the movement of the rides ended up being too much for him. You can see where he had a rash (right side) from the tape the held the NG tube in. It took a long time to get rid of it. I think the look on his face says it all. J