If you have, or know someone who has, a child with special restrictive dietary needs, then you know how difficult mealtimes can be. When Trey was only 2 weeks old, we found out that he was allergic to milk, so I took milk out of my diet and still breastfed. As time went on, Trey didn't gain weight like he should. We got very familiar with Primary Children's gastroenterology department, and went there frequently to try to figure out why Trey wasn't absorbing any of the nutrients that he was eating. A regular day for Trey was throwing up (not just spitting up) about 2 to 4 times and having anywhere from 8-10 diarrhea diapers. I was scared to put anything in his mouth. When he turned about 18 months old, we were counseled to put him on a soy protein shake to help him gain weight. Not good....Trey had an anaphalaxic response. I fed him a shake and watched in horror as his faced swelled up, he had trouble breathing and he promptly threw up all that he had just drank. That is when we realized that we were dealing with some intense food allergies and not just an underdeveloped stomach. Because of this, I took Trey to the allergist and had him tested. This is not a fun thing to do with a toddler, their backs are pricked with common allergins to see if any test positive. So then you wait to see how many swell up, all the while trying to sooth your miserable child. We were lucky, Trey only had a moderate allergy to milk and an allergy to egg.
This was good news, but basically this didn't tell me any new imformation, it didn't explain why he was still having trouble with food and was not gaining any weight after we had taken him off of these things. We weren't worried about Trey having trouble breathing anymore, because we stopped all milk and took him off of the soy protein shakes. Thankfully he stopped the choking episodes, but still I had a child who was constantly miserable. The doctors counseled me to start a food journal. It was one of the most frustrating times for me. Trey was officially given the label of "failure to thrive", and I felt like a "failed parent". After taking Trey off of milk and the soy shakes, he stopped throwing up multiple times a day, and after many prayers and a lot of research I came across a blog about MSPI. (Milk Soy Protein Intolerance) Once again I felt that they Lord was speaking to me and knew that this was something that could be a great fit for Trey.
Kids with MSPI are allergic to the proteins in milk and soy products, so it explains why Trey would be fine with some foods with milk and soy and not others. For example, if there is soy vegetable oil in the food, and you have MSPI, you are fine because vegetable oil is a fat and not a protein. Some of the symptoms that Trey had were extreme fussiness (colic symptoms) after feeding, a reddish sandpaper rash over his body, exessive spitting, and diarrhea. Since we didn't catch this early, the symptoms got progressively worse. There were so many things that were red flags with Trey, that a simple diagnosis was overlooked. If your child has any of these symptoms, ask your doctor about MSPI.
Trey went on a special restrictive diet following guidelines for MSPI kids. At 3 Trey FINALLY had a solid bowel movement! Up to that point, my life and my family all revolved around Trey's bowel movements. The first thing my husband would ask me as he got home from work was: "How was Trey's diapers today." I was up to my neck in sh@#! I told my husband that he had to ask me about something besides Trey's diapers or I was going to lose my mind.
Now that Trey was having a couple solid bowel movements, I started to focus on other things that were concerning me. Trey was develolpmentally behind, I had known this before, but we were just trying to keep him alive. Now these delays were glaringly apparent. We had Trey evaluated with the early learning program in our area when he was 3 and he qualified for the early learning program. Trey was mentally delayed, his fine motor skills were delayed and he was disabled in the language department. I knew that the whole time that I was answering questions about him, that the specialists were trying to decide whether he was autistic or not. Trey was on the scale enough, that we didn't finish the questionnairre, I couldn't answer the question of whether or not he engaged in pretend play. I didn't know, he was so quiet and didn't engage much with other kids. The specialist told me that she would call me the next day, and to observe him carefully. I did just that, and realized that it was hard to tell if he did or not. We didn't have a play kitchen and he didn't speak, so I couldn't tell what he was doing with the toys that he did play with. Finally I got my answer while I was watching Trey play with his brothers. My boys were playing with their light sabers and Trey pretended to die...happy day!!
We stuck with the MSPI diet pretty good and life took on a new normal. Trey started the preschool program and seemed to be doing good. A couple months ago I had the end of the year meeting with his SLP and preschool teachers. We had worked so hard at home the whole year and I was excited to hear if Trey had shown the SLP any of the sounds that we'd worked on. I had bought an Apraxia Program and we had worked hard, he could say 'p' 'b' 'e' and 'o'. So I went to the meeting with high expectations, during the meeting I was told that he had made many significant improvements. He had just barely, the day before, finally participated in circle time with the actions. This, after 7 months in preschool.....he participated once that whole time, and he was tolerating other kids in his space. Not playing with them, but tolerating them, and he had not made any sounds for the SLP. This was all told to me excitedly, while I sat there thinking "This is not right, the other kids are engaging and talking and all Trey is doing is tolerating kids in his space." I was deflated. So I was back to looking at the big "A". I have known that he was firmly on the autistic scale. There are three areas to look at when looking at the autistism spectrum. Social, behavioral, and language. Behaviorally, Trey had many markers, they are getting less and less pronounced as he gets older, but they were still there. The language area is hard to tell since there is no language, but simply because of that fact he is on the spectrum. However, socially it didn't fit. Trey makes connections, he looks into my eyes and plays with me. He doesn't do this with everyone, he has to be very familiar with them and has to have prolonged exposure to people first, but he does make those connections. So I've been back to pondering on this and studying this aspect of my sweet boy. I have been wondering if it might still come down to diet.
About a week ago I noticed that Trey had a sandpaper rash over his entire body, even his face. He has very ezematic skin, but it was noticable, so I have researched the GFCF diet that so many autistic kids go on. This diet is good for autistic kids, but also for those with allergies, ADHD, and other developmental delays. I already know that Trey has trouble with milk (caisen is the milk protein) and soy, so its not that big of a stretch to think that gluten could be a problem as well. What do I have to lose? So I've put Trey on the GFCF diet with no soy added to it....all I can say is that I can see a HUGE difference in just this short time. NO more rash, better behavior, he is actually interested in potty training, and he is trying to mimick language. I'm a believer!
In a nut shell, there are small spaces in the lining of the gut, tiny particles of proteins migrate from the gut into the bloodstream through these spaces. If the gut becomes damaged, its lining may develop larger openings and become too permeable. This is called "leaky gut", and this "leaky"gut may allow chains of amino acids to pass throught the gut into the bloodstream. Incompletely digested foods and toxic funal waste products can also pass through.
This makes sense for Trey, maybe why he is 3 and a half and still only weighs 25 pounds, though he eats like a truck driver.
Basically, the whole first 3 years of Trey's life, his body has been in survival mode. The nutrients that he eats have been partially lost and so the brain has not been able to properly develop. He has had to use all of his energy to live, so now we will try to see if this new diet will be the answer to our prayers. I am not satisfied with just survival for Trey, I want him to thrive and excel... I know that there is a special mission for him, and it is my mission to help him fulfill his.
Now starts the next phase of our journey....bring it on!