I originally posted this on another board. I have updated it and hope other moms will post their stories to. I can’t tell you all how much it has helped me to share thoughts and experiences with moms like me. It is a constant source of strength and support! Why are we on TED? First, we found that the doctors we have dealt with have such little experience in this area. What I have learned about food intolerances has come through extensive research and boards like this. I hopeby posting this, someone else might feel a little better as well. My son was born last December. My husband and I were thrilled when the pediatrician said he was perfectly healthy. I breastfeed him, and he has always gained weight well; he has never had growth issues. He even slept through the night for the first few months, waking every two to three hours to nurse and then blissfully falling asleep once again. This changed at the end of the second month. My son began crying a lot, developing terrible bottom rashes despite being changed almost immediately when wet. He could not be consoled, especially around 4:00pm to 8:00pm. He also spit up consistently and would wake all night long. Our pediatrician recommended zantac and we began giving it to him. We were told that it was probably colic as far as the crying goes. He also would crunch up his little body as if he were trying to pass gas and stools; he had constant gas. He had terrible bowel movements that were mucousy, sometimes stringy, sometimes very loose. He had them all day long. The Zantac seemed to bring him a bit of relief, so we figured this all had to be reflux. About a month after this, on a particularly weak day for me, I headed to the bakery and got myself a chocolate croissant (something I do when I’m frazzled.) Within five hours of eating that croissant, my son was screaming and writhing in pain. I remember thinking Oh my God, did I do this? Is it the food??? So many doctors had told me that it doesn’t matter what you eat, your body breaks it down for your breast milk… right. After some research on the web that night, I resolved to remove dairy and soy out of my diet, learning that many babies react to these. Within three days, my son was getting better. He still had some issues but was definitely better. It was touch and go for a while. By six months, we were ready to start solids. We found a rice cereal with no soy and he seemed to love it. By day two on rice, my poor son was more miserable than he had ever been. He just couldn’t stop crying. All of the symptoms he had ever experienced came back worse than they had ever been. I stopped the rice cereal and made an appointment with a ped. GI. I had staked everything on this appointment. I did my homework and came armed with what I had found. I made a list of all of the foods that I had eaten that I had felt were bothering my son. (This list included fish, wheat, eggs, soy, beef, dairy, corn, citrus, rice, apples, strawberries, avocados, bananas, lettuce, celery, any sweetners and meds, etc.) I made a list of all of the symptoms he was experiencing as well as when he experienced them. When I had the appointment, I received a less than cool reception about my list. The doctor shrugged at the suggestion of the MSPI and said he had never heard of a baby not being able to tolerate so many foods. He looked at my lists as though I was nuts. He kept saying, how did you figure all of this out anyway. He took a stool sample and said there was no blood, sent us for a blood test/allergy workup and told us to come back in two weeks. He promised to show the lists to his colleagues and research a bit in order to find out what was going on. I went home dejected, feeling stupid, feeling bewildered and lost. Now I felt like no one could help. I kept thinking Yes, my son was gaining weight. Okay, no blood on the stool—that’s good too, but something is still very wrong! We went back in two weeks, again hopeful , and he had NOTHING. He didn’t remember us. He couldn’t find my lists. He hadn’t discussed us with his colleagues. He sat there perplexed. I reminded him that we went for a blood test. He looked at the charts, said he had received the blood lab and it showed no allergies. He asked us THE SAME questions he had at the first appointment. I sat there, mouth open, thinking– had I researched and found out more about my son’s condition than this DOCTOR??? That was it. I was done. I went home and started my research again. This time I found an article written about MFPI. I was so excited to see the symptoms and the foods listed, to read in print what my son was experiencing made me elated. Armed with my new information, I began the TED. (I left out the rice.) Within three days, my son was a new person. He was sleeping. He was having yellow seedy bowel movements. His crying decreased to a few times a day and seemed to be from needs rather than discomfort. He was consolable. He no longer spit up all day long. He was able to burp without spitting up. I have been on the TED since he was six months old, for almost nine months now. He is so healthy! My son was finally able to tolerate pears at 9 months and yellow squash in small amounts at 10 months. Now, at 14 months, he is tolerating Lundberg’s Organic Brown Rice Cakes. We have been challenging other foods, too. Some go well, some not so well. The good news is that the rice to which he used to react terribly is now a food that seems to be okay in small amounts or in rotation. I worried so much about my son’s only source of nutrition being my breast milk for so long, but he truly is thriving, and seems to be getting better every month as far as food reactions go, particularly after the ten month mark. I have learned so much in this process. I learned that symptoms will always get worse when my son is teething or sick. I learned that his medication has to be compounded because the additives and sweeteners make him sick (sorbitol, citric acid, corn syrup). I learned that my multivitamin had additives that made him sick. I learned to trust myself when it comes to knowing my son no matter what a doctor says. I learned that one CAN know a little more than a doctor sometimes. I also learned in order to find the right doctor, you have to keep looking and questioning. Most importantly, I learned that you can learn anything about your child’s diet through the use of the TED. AND I learned it was actually possible for me to eat nothing but turkey, pears, yellow squash, sweet potatoes, sea salt, and ol
ive oil while drinking only water for nine months and counting (definitely not appetizing, but possible). Just recently, I have been able to add lamb to my own diet. I have since found a ped. allergist who is familiar with intolerances (Thank God) and who made me feel at ease with a medical professional regarding this condition for the first time in many months. The worst thing about this condition is of course the pain it causes my son. The second worse thing is the guilt and the absolute unknown you go through as a parent while finding out all of the things that need to be done in order to make it better. Hang in there on your TED. I hope sharing these stories can help us all relate and look forward to hearing yours.
Dorothy
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