The doctors had assured me that all of Silas’ problems were due to reflux and that he’d outgrow it by the time he was a year old. I wasn’t sure they were right, but all I could do was wait it out. When he turned one, they said to give it a little more time, some kids take longer than a year. In February of 2007, we had allergy testing done which showed allergies to milk, corn, peanuts, pork, and cucumbers. I removed all of these things from Silas’ diet, but it didn’t solve anything. The doctors changed from saying, “It’s reflux” to “It’s food allergies. He’ll outgrow it by 3 or 4.” If making it to one year sounded hard, you can imagine how difficult it was when they told me we had to endure this until he turned 3 or 4. I pray none of you ever have to watch any of your children live in pain for years on end.
Six months after the initial visit with the allergist, the only allergy that still showed up was milk. Another six months later, the test said that all of the allergies were gone. However, the other doctors stuck with the food allergy theory - even though the allergist said that wasn’t the problem.
Transitioning Silas to “real food” had never gone well either. Every time I would try to add in foods, he was very sick within two weeks. My one consolation was that I could put him back on the Good Start formula each time and everything would settle back down with in a few weeks. He especially had difficulty with the grains most kids eat during this time. He would end up with a rash, congestion, fever, and abdominal pains. He could not have anything like cookies or cake. He would wake up throwing up several times that night and spike a high fever. Before she left to be with her kids, Ped #2 ran a blood test for Celiac Disease, but it came back normal. Later, I would take Silas to see Ped #3 during these reactions. He would not take blood or anything and just say, “It’s probably a virus,” and send us home. Silas was having these terrible screaming spells as well. They generally lasted 30 minutes. Even if I’d tried to drive him straight to the doctor, it would be over by the time I got there.
During all of this, we were taking Autumn to therapy several days a week. One of the moms that I met was a nurse. She suggested I look into metabolic disorders. She said Silas should not have problems with so many foods and said this might be the answer. In January 2008, we saw a neurologist who specializes in metabolic disorders. (Later, she would become Autumn’s Neuro #2.) She found that some of Silas’ amino acids and organic acids were elevated – but not enough to be a metabolic disorder. I always wondered if the tests were accurate because Silas was only drinking formula at the time, so he was in a fairly good period. Some metabolic disorders can be controlled with diet, and the child’s levels can return to normal while on the correct diet. However, Neuro #2 didn’t think it was metabolic, so I focused my research on other areas.
In February 2008, GI #1 scheduled an endoscopy. It showed signs of reflux, and I believe the duodenum was inflamed. Until 2008, Silas had diarrhea his entire life. Suddenly, he started having problems with constipation. Silas was now two, and his diet still consisted mostly of formula. When he was on this and nothing else, all of the symptoms would go away. He was so happy. I could see glimpses of his true personality, and it was so refreshing. However, he couldn’t stay on formula forever, so I kept starting over, trying to find things he could eat – each time hopeful that it was going to work. But every time, he’d end up very, very sick.
I’ve mentioned the screaming spells. Silas would lie in the floor and scream like someone was stabbing him to death. When he was a baby, I could hold him until it was over. The older he got, the harder it was for me to hold him, and I would have to just leave him crying on the floor until it ended. He did not want to be touched during one of these spells. Afterward, he would sit in my lap, exhausted. They occurred most often in the afternoon. As he got worse, he might have another in the morning and other times throughout the day. When it was really bad, he would have 2-3 per day that lasted an hour each. It absolutely ripped my heart out to have to watch him suffer like this day after day.
One week when he’d been in lots of pain, I tried taking him to the pediatrician again. Ped #3 wasn’t in that day, so we had to see another doctor in the same office. That definitely didn’t go well. He told me that it was yet to be seen whether Silas was actually in pain or if this was a behavior problem. By this time, I was getting bolder and not letting them run over me so easily. However, he firmly insisted that it was most likely a behavior problem. I told him that I had worked with kids a lot and I knew something about children’s behaviors. I also insisted that I was his mom, and I KNEW that something was wrong. He looked me straight in the eyes and said, “You’d think parents know their children, but really they don’t.” He also said that we’d had enough tests run and I needed to accept that there was nothing wrong with Silas. I made it to the van, and fell apart.
“To be at the end of man’s resources is not to be at the end of God’s resources; on the contrary, it is to be precisely in the position best suited to prove and benefit from them, and to experience the surplus of the power of God breaking through and resolving the human dilemma.” - Philip Hughes