If We Had to Do It All Over Again
I recently received a query from a person who asked me how we would approach Leelo's treatment if we had to do it all over again. I am a lazy typist, so no harm in recycling my answer, I hope:
My opinion has always been that there's no harm in trying the GFCF diet. It is a pain in the ass for parents, and transitioning to the more limited diet can be very much not-fun. I really do think that some kids are helped by this diet, and until we have a test that can tell us which kids those are, it's worth a shot. If you have any history of dairy or wheat allergies in your family, consider a trial run (Keryn Serouzi's Unrave1ing the Mystery of Auti5m book is a good, though bombastic, read on the subject).
Leelo is one of the kids who had far too many antibiotics as an infant/toddler. I think they really did put his gut biota out of whack. In his case, a limited sugar, whole grains diet helps a lot and makes sense. I think that the antifungals (temporary), probiotics, and digestive enzymes (ongoing) have also made a difference in his behavior and digestive health. If your child gets the "crazies," then I would see if limiting sugar intake makes any difference.
I really do think the B12 shots have made a difference for Leelo, most likely because it is so important for brain function and he doesn't get it throught his diet (he is practically a vegan, and absolutely won't touch meat).
As far as the other supplements go, in our case they are mostly not helpful. We are going to transition back to only those that plug the nutrition holes in his diet (multivitamins, calcium, cod liver oil, B12, probiotics, digestive enzymes). This doesn't mean that the DAN supplements are not helpful for other kids. But they don't help Leelo.
So, if I had to do it all over again, I would probably:
1) Set up an ABA program
2) Arrange for Speech and Occupational therapy
3) Review his diet for any deficiencies related to brain function (B12, cod liver oil)
4) Get on an email board of parents in similar circumstances
5) Try the GFCF diet
If, after all this, I saw no progress, then I would thoroughly screen and then arrange to see a DAN doctor who could guide us through the supplement circus.
Good luck to you,