We Nearly Lost our Son

Todd was born September 14, 1966. He was a happy, contented baby. If we’d stopped with him I’d have never understood mothers who were frazzled because the baby was getting into things. If Todd found something on the floor he gave it to me. It didn’t go into his mouth. While I was pregnant with our second baby and couldn’t get around much, Todd would sit on the floor near my chair and play with his toys.

He was 14 ½ months old when Amy was born. He seemed to think she was okay and would come for me if she cried and I wasn’t there immediately. When Amy was 3 months old Todd started getting very fussy. At first we thought, as did the Doctor, that it was a behavior problem. That the new baby situation was getting to him and he needed more attention.

He had been on antibiotics for an ear infection and developed diarrhea. We weren’t terribly alarmed as that was often a side effect of the antibiotics. In addition, my husband’s aunt had just spent a year battling problems with her bowels and digestive system due to a reaction from an antibiotic. Because of her long lasting problems, we were prone to believe that Todd’s problems were similar.

He kept getting worse. He would wake up in the night crying and I would feed him. He was always hungry and I was always feeding him. His bowels became foul smelling and foamed up all over everything. If he had diarrhea in his bed, we had to wash all the sheets and blankets as well as everything he had worn (and sometimes the adjoining wall.) When we rinsed diapers in the toilet, his stools floated to the top of the water.

I had him to the doctor several times. It was a case of the doctor not asking the right questions to realize what was wrong with Todd. Because we had gotten used to some of the problems slowly, we didn’t always realize the significance and failed to report them. The foul odor, as it turned out, was a prime clue. But we didn’t mention it. (Diarrhea always smells bad.)

He sat and didn’t seem to have the strength to walk. His legs and arms got so skinny that his baby sister’s plastic pants fit him. But his tummy was swollen so big his clothes didn’t cover it. He looked like the pictures we saw in the magazines and news reels of the starving children in Biafra.

Todd started crying most of the time. If I sat and rocked him with his head on my shoulder he would stop. That made it seem like it was, in fact, behavior related, at least the crying part.

When he’d fall asleep, I’d try to get the dishes done, fold the laundry, etc. (There was a lot of laundry as we washed everything he wore and used every day. In addition, we were still using cloth diapers on both babies.)

Finally, when Todd had been sick for nearly three months the doctor decided we needed to remove wheat from his diet. We did and took him back in a week. There was not enough improvement so he was hospitalized for tests.

I stayed with him until eleven or later at night and came back at six in the morning. (they wouldn’t let me stay over night). My husband and his sister took care of little Amy. Todd was terrified of being in his bed and room (where he got stuck with needles, etc.) so I walked the halls of the hospital, carrying him. By the end of the first day I had blisters on my feet. The nurses would find me in the hallways or in the play room (where we could sit for about ten minutes before he fussed) and send me back to his room whenever they needed to run another test.

‘ After his first series sof tests came back the doctor told me that they had ruled out cyctic fibrosis. Only then did he tell me that the early symptoms were very alike. I was so grateful to God. The only thing I knew about cystic fibrosis was that it was often fatal. “Anything else, God” I prayed.

Tests finally determined that Todd had Celiac Disease. The doctor explained to us that it was a total intolerance of gluten in his diet. (Gluten is the property in grains that works with the leavening to create air bubbles, etc and makes the product rise. That caused the lining of his intestines to become diseased and prevent any absorption of food. So, in simple language, he was starving to death even thought I’d been feeding him around the clock. Everything went straight thru, especially the butterfat which is what made his stools float.

The cure didn’t involve any medicine. I was told that I had to totally eliminate any gluten, preservatives, food additives and food coloring from his diet. Removing the irritants would allow the intestine lining to heal and begin to absorb nourishment. The hospital dietitian tried to help me but had very little information to offer.

When they discharged Todd the hospital told me that he was within two weeks of dying. It was terribly frightening to be totally responsible for keeping him alive. At that time, 1968, there were no health food stores in Rapid City. Some grocery stores had small sacks of rice flour or potato starch. However no one really knew much about cooking with those.

I became an avid ingredient reader. It was amazing how few products could remain a part of his diet. Everything had something in it he couldn’t eat. (His daddy had, early on, taught him to love ice cream. He could only have it if we made homemade.) Things we would assume were okay would be withing his reach when I would suddenly grab the box and read the ingredients to find a forbidden food listed.

I tried my hand at baking for him. My first effort was to bake him some banana bread. I simply substituted potato starch for the flour the recipe called for. I divided the batter into four small loaf pans. A full sized banana bread will bake in an hour. These ¼ sized loaves were still gooey in the middle after 2 ½ hours. I finally threw them out. The next day I made a batch of brownies using rice flour. They were so crumbly he had to have help to eat them with a spoon. Eventually, I learned to mix the two types of flour in a good ratio and got a reasonably good product.

I found a business in Minneapolis where I could order the flours I needed to bake for him. I also found rice wafers that could be crisped in the oven and were very like cracker. He liked them so we kept them on hand for years.

It took months but eventually his intestines healed and he started gaining back some of the weight he’d lost. It was nearly a year before the bloating of his stomach was completely gone.

We were so afraid of him eating something that ewould set the whole thing off again that we constantly impressed him with the idea that he shouldn’t eat anything unless we approved it.

A year after Todd’s hospital stay the hospital dietician called me for help. She assumed I’d learned something about feeding him and cooking for him that would help her. She had another patient with the same diet requirement and she had no idea what to feed him. I was able to tell her what I’d figured out which went into her book for future patients.

I baked cupcakes for him and kept them in the freezer. If he was invited to a birthday party I took a cupcake for him. As he got a little older he chose to go without rather than be ‘different.’ All through elementary and junior high I baked special bread, cake and cookies for him. He couldn’t have any pasta but he became very fond of rice and potatoes.

This whole thing changed his personality and outlook. He had been a very happy baby. He became a very serious little boy. Our doctor said it would be impossible for anyone to live with that kind of pain for that long without it changing them. We could see the pain in his eyes for a very long time.

We are very fortunate that our doctor did diagnose Todd before It was too late. A few years after Todd’s ordeal a little girl in Rapid City died from the same disease. By the time the doctors diagnosed her, it was too late.

Todd is in his fifties, still follows the gluten free diet, and has two children, one in college and one in high school.

The End