We’ve now had T on a GFCF (Gluten Free, Casein Free) diet for 6 weeks. We’ve also started him on the incredible journey of biomedical intervention since our visit with the DAN! doc last month. Test results have come back – not all, but some – and he is currently on a prescription for yeast overgrowth in the intestine, another prescription for a bacterial infection, and a third for iodine deficiency. Then there are vitamins and supplements: Super Nu-thera, DMG, zinc, vitamin C, cod liver oil (that one hasn’t gone over too well), probiotics, and soon we’ll add digestive enzymes and something called L-Carnitine to help with attention. It feels like my entire day is giving T some syringe full of liquid meds or applesauce mixed with supplements. He’s such a trooper about it, but today I could tell he was getting tired of it.
We haven’t heard back about allergies yet. That should come any day now. I’m trying not to worry about an allergy to corn or soy. Those are pretty typical allergies, and could have a huge impact on the dietary changes we’ve already made for him. But I’m not thinking about that – don’t have much time to, anyway.
Have we seen any changes? Hard to say at this point. He has been able to sit with one of his Verbal Behavior therapists for 40 minutes and work – with reinforcements, but no breaks. Remarkable. He also came to me for comfort today – that merited a separate post. Rob says that he sees less aloofness, which is good. I’m with him all the time so it’s hard to notice subtle changes. But then again, my sister lost like 80 pounds back in the 1980’s and since I saw her all the time I didn’t notice until I saw pictures of her from several months previous.
On the downside, he is much more “stimmy” (short for self-stimulatory behaviors.) He shakes his hands in front of his face, grinds his teeth, and literally runs in circles at school (I witnessed this myself last week.) No running in circles at home – he has the humidifier and various spinning toys that he rescues from their hiding places to meet that need. Aggression has reared its ugly head again – he hasn’t pulled my hair in months, and just a few days ago pulled so hard that I nearly cried. Granted, I thwarted him from doing something he wanted to do then proceeded to confuse him, but he hasn’t tried to hurt me in a long time and I was really, really surprised and sad when he did (I learned from experience not to react – not even change facial expression when he does things like that – but this time it was impossible.) I understand that this sort of regression is normal when starting the GFCF diet and yeast meds because their little bodies are going through so much with the yeast dying off, and they just feel bad for a while. But as I said to my sister last night, I’m ready for him to feel better and to see some results from all this effort.
So long story short, we’re riding this experiment out. I’ve been told to be patient, and I’m doing my best. That’s what my life is about, anyway – immense, unending patience.