If you missed Part 1 & Part 2, you can read them here:
I began researching elimination diets and the possible benefits they could have for autistic individuals with gastrointestinal issues. Although many say that there isn’t enough “scientific research” that any of this works, I didn’t care about that. Nothing in life is guaranteed. No form of therapy, intervention and/or treatment is guaranteed to work for everyone, backed by scientific research or not. Everyone is different and responds to things differently. As we know, there is no one size fits all when it comes to autism. Regardless of the opinions of others, I was willing to try anything and everything in hopes to bring my sweet boy relief, if it would not harm him. If I didn’t try, I knew I would always wonder if it would have made a difference for Jayden. If it didn’t, we’d move on the same we’ve done with other treatment/interventions that were not well suited for him or had served their purpose for the time being.
I took this opportunity to apply for a family grant. This grant was a biomedical jumpstart, if you will, for families to begin their journey. This grant carried a value of roughly $2,500.00. With this grant, it would cover the cost of; Two visits with a medical physician specifically trained in autism (initial visit and follow up), a 90-day supply of vitamins, minerals and supplements, Comprehensive Stool Analysis Lab Test, Urine Porphyrins Lab Test, a parent mentor, a parent support group for families starting the grant at the same time, dietary intervention training and ongoing discounts on supplements and programs provided by their partners after completion of the grant program. If chosen for this grant, we had to be prepared to complete a first interview, with 8 questions, and Jayden would need to be gluten and casein free by a specific date to qualify. Much time had passed, and I had not heard anything on whether Jayden would be a grant recipient. I assumed he was not chosen and continued to research options.
In October of 2010, Jayden had just begun his 2nd year in preschool and was a little over 4 years old, the family grant contacted me to let me know that Jayden had been chosen for the grant! As exciting as this news was and how grateful I was to be given this opportunity for Jayden, I was so nervous. I couldn’t fathom how we would get Jayden completely gluten and casein free by the February 2011 date they gave. Jayden was only eating 3 foods at this time and 2 of them contained gluten and the Pediasure contained casein. I panicked. Had I made a decision based on desperation and not reality? What was Jayden going to eat? He already barely ate anything. Was he even going to eat? It was easier to give up before we started and pass the grant on to another family. But we didn’t! I went out and purchased gluten and casein free foods for Jayden and tossed all of his favorite things so they would not be available as an option to him. I recall spending hours in the grocery store and at specialty shops reading label after label.
Looking back, I can’t begin to express how difficult the first few days were as Jayden would just cry and not eat anything that was offered to him. He would bring me over to the cabinet where his favorites had been kept. It was so hard. I worried that he wasn’t going to eat anything, and it was scary. At night when Jayden would go to bed, I would question whether this would be worth it…if he wasn’t eating, what good would that be doing? I struggled with this for a few days, but I wasn’t ready to throw the towel in just yet. All of the traditional testing we had done up until that point, was not showing us anything, aside from Jayden’s autism diagnosis. Something was going on internally that was causing him pain. As easy as it would have been to give up, we didn’t and I couldn’t be happier, 11 years later!
Once Jayden was completely gluten and casein free and began the 90 program, there were so many ups and downs! I journaled every day for the 90 days…the good, the bad and the ugly! Jayden was still having difficulty staying asleep at night. He was having diarrhea for days at a time and some days not moving his bowels. He was very irritable and cried often, especially at school and during his therapy sessions…even his very favorite ones. He was only eating applesauce and pudding for breakfast, lunch and dinner and would protest all the food options presented to him by either gagging, vomiting and/or throwing the food/plates on the floor. He also was having many behaviors, kicking, throwing himself and hitting his head.
Although Jayden had begun a vitamin and mineral protocol, with him not eating much, I started to panic, yet again. I began to research alternatives to Pediasure that didn’t contain what Jayden couldn’t have. I came across E028 Splash made by Neocate. This was an alternative for kids with G.I. issues and food allergies. I contacted Jayden’s Nutritionist to see if they could get this covered by insurance since he was no longer getting the Pediasure . Despite his Nutritionist efforts and several appeals, the insurance continuously denied the request. They denied this request because Jayden had traditional G.I. and food allergy testing done and there hadn’t been anything found. We decided to pay out of pocket to give this a shot so we didn’t have to give up just yet. Each case cost $132.00 and only lasted 9 days YIKES!
During the time Jayden was participating in the program, despite the negatives in the beginning, there were many positives by the conclusion of the 90 days! Jayden had seen the suggested Doctor about halfway through the grant and I had collected necessary samples for stool and urine analysis. We wouldn’t receive these results and have a follow up visit until the grant had ended but, the cost would still be covered through the grant.
Jayden begun trying new foods! Even if he didn’t like them, he was willing to try bites of things! If he liked it, he’d continue to eat it! He was now eating applesauce, breakfast bars, snack bars, a few different types of cookies and crackers, bananas and deli meats and continuing with the E028 Splash. Jayden’s eye contact had increased, and his crying had decreased! His sleep patterns were much better, as he was sleeping through the night most nights with little disturbances! He was moving his bowels regularly and wasn’t suffering from diarrhea or constipation as often! He was doing wonderful things in his therapy sessions and at school! Jayden was using pictures to request preferred toys, books and snacks! He was successfully signing “want”, “more” and “go” (when on his horse)! He began flying through his imitation training and was clapping (which we hadn’t seen him do since he was a baby), giving high fives and following some one step directions! He was receptively understanding some familiar words/actions like “flat feet” when he would walk on his toes…he’d then walk flat footed after hearing that! He was doing great with some activities of daily living such as; eating with a fork and spoon, stabilizing food containers to “scoop” his food out of, drinking from an open cup (with some spills) & straw, pulling his pants up and down in the bathroom, and putting socks and shoes on with little assistance! He had also established a toileting routine. Although Jayden would not request going to the bathroom, he was taken on a schedule and would successfully void but not move his bowels on the toilet. Our family and friends began to notice how well Jayden was doing! They noticed how much more aware and attentive he was! He was also exploring his environments so much more, especially his room and his toys!
At the conclusion of the grant, I had gone back and read all 90 days of journaling. I also had to complete a 3rd interview of 6 questions. I couldn’t believe how much progress Jayden had made in such a short period of time. He seemed happier and not in pain. Just for the fact that he had been moving his bowels regularly and had been sleeping through the night again, this was enough for us to keep Jayden on this diet and supplement protocol. We had gone 2 years with sleepless and exhausting nights. Copies of my journal, along with interview questions and before and after photos of Jayden were required at the conclusion of the grant. The photos alone, speak volumes! It was difficult to get pictures of Jayden looking at the camera and smiling! He was happy and feeling better!
To be continued…
ASD: Promises To Keep 