Marcus Autism Institute is a beautiful facility! It was very welcoming to adults and children. The family room and playroom was a nice commodity to have while you wait, also amazing for the people that are there 6-8 weeks with their children. We met some families that had been there from 3 to 8 weeks, their children were starting to make great progress! It was such a comforting thing to know all of these people we interacted with knew exactly what life was like with feeding struggles.
We first went over all of the details of the clinical trial, signed multiple consents and then filled out a huge packet of papers about Connor's eating habits. The next part was to watch me feed Connor. They had us in a room with a mirror window while they sat on the other side and video recorded us. I had an earbud in my ear while they told me what to do next. Connor was presented with puréed green beans, pears, potatoes, and garbanzo beans.....did I mention they were ALL puréed?! I was only allowed to offer a certain amount of food on the spoon in 30 second intervals. Every 30 seconds they told me in my ear to try the next food, we did this 16 times. I wasn't expecting this to go well, he hadn't had a nap all day and it was in the middle of his normal nap AND he has just finished his gtube feed about 1.5 hours before! And wouldn't you know Connor opened his mouth for each bite and had swallowed it before the 30 seconds were up...he even signed "more" during this rotation of food!! Josh and I were astonished!! We have struggled with feeding issues basically since he was 6 months old and he ate EVERY SINGLE BITE!!
After the completion of the feeding observation we met with 2 of the doctors. The first doctor tells us that C didn't display any refusal behaviors so therefore he doesn't qualify for the clinical trial! What?!! They don't want to give him medicine for a behavior problem when he doesn't have that problem, which I agree with the medicine part. We all know that if this were a year ago, he would have qualified because of his behaviors. Thanks to our great feeding therapist and food play so often, he now rarely displays negative behaviors with food and is willing to taste almost anything. His problem now is chewing and swallowing...which apparently is not what this clinical trial is focusing on.
We then met with another doctor, the head doctor of the feeding program at Marcus. He told us that C did so well with puréed foods that he believes if he were to come back for 1-2 weeks for intense therapy that he could hopefully be weaned off of his gtube feeds! We discussed the insurance issue but it turns out his secondary insurance is accepted there! It will take atleast 2 months to get approval but hopefully all will work out. In the meantime, the doctor told me he was going to email me their protocol for what to do so we can work on it at home. I am anxiously awaiting this email so I can see how they handle these challenges and what they recommend.
Since we have been home, we have gone back to puréed foods. He never was very fond or successful with pureed foods in the past, hence why we moved in to more solid foods and have never tried purees again. Last night he was very successful, he did end up vomiting but did continue to eat afterwards. So far today he actually ate about 45 bites from the spoon at lunch! He demolished his potatoes at lunch! I am thinking all of the textured foods, chewing and swallowing all go hand in hand with his sensory issues...which I am praying he will overcome one day and eat everything! In the meantime we are going to offer him puréed foods and just see how things go.
I hate that he didn't qualify for the trial, but we learned some new things while we were there! I will update on how he is eating, I am praying that he continues to be so willing to accept food!
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