Tom was born on time after an uneventful pregnancy and we came home from the hospital. Two days later we took him back as he wasn't eating and seemed lethargic. He was diagnosed with severe hypoglycemia (low blood sugar... his was 6... VERY low). He began seizing not long after they rehydrated him and got his blood sugar up. He seized for 24-48 hours and was placed on phenobarb. It took 12 days before he was able to regulate his blood sugar and come home. He was only on phenobarb for 3 weeks, and then we were given a clean bill of health.

At his NICU follow-up check-up at 5 months, we were told he was delayed. It was a shock to us. He did not start having seizures again until 15 months. A CT scan at the time was clean. His seizures were simple partials, and we started him on Tegretol. Tom has always been very well controlled on AEDs. Of course, at that age, kids grow quickly and meds need to be increased fairly regularly to keep up. I began to suspect that it was yogurt that was triggering his seizures. Our neuro laughed. He could see dairy as a trigger, but not yogurt. At this point, I don't think it was yogurt so much as the total quantity of dairy consumed on days he had yogurt versus non-yogurt days.

A few months before he turned 3, his seizures generalized to myoclonics. That blew my yogurt theory out of the water. Because of the change in seizures, we had an excuse to have another MRI (hadn't had one since NICU days). This is when we found the damage from the hypoglycemia. This is also when I began more searching for answers and eventually found BrainTalk.

Not long after I joined BrainTalk, DogtorJ began posting. While I sort of kind of thought of him as a nut (harmless nut), he did remind me of my yogurt theory. I did some reading (online and library)... mostly on autism and gluten-free / casein-free. Tom is not technically autistic, but he does have some autistic tendencies. Some others responded positively to DogtorJ's posts, and then a woman at church gave witness. I missed most of it, but got there in time to hear that her son had epilepsy (which I didn't know). At the end, she mentioned praying to God to give her a sign, and to make it neon. I decided this must be my sign. We would try dairy-free with Tom and prove everyone wrong. Hah!

Bec (on Child Neurology / BrainTalk) had posted that you have to go dairy-free for 6 weeks to get it all out of your system. We did Tom for 8 weeks before trying dairy again. Two weeks into our experiment, he had withdrawal seizures (very mild seizures, and I didn't realize they were dairy withdrawal until much later). When we tried him on dairy after 8 weeks, he was soooo hyper. No seizures, but clearly a reaction. I hadn't told his teachers at school about the experiment, and they grilled me when I picked him up that day. "What did you give him?! He could not sit still! He was throwing everything on the floor!" etc, etc, etc.

It took awhile for me to slowly start weaning him off his meds. Mr. Kay made comments about how much better Tom seemed to be doing, and I fessed up about reducing his drugs. Mr. Kay then insisted we talk to our neuro about it before going any further. At our appointment, our neuro said we could do it, but he thought we'd see more seizures if we did. He gave us a weaning schedule (which made us feel better), and we started reducing.

We didn't get too far, when Tom had a minor seizure (2 minutes) one night after supper. It was a simple partial. All of his seizures since going dairy-free have been simple partials. To me, since he has brain damage, partial seizures make sense (only "part" of the brain affected.) My theory is that dairy gave him a "milk-buzz" that caused his seizures to generalize (affect *all* of the brain.)

Anyway, we were supposed to reduce his Keppra again that night, and I post-poned it. A week later, we had the same meal for supper, and again a minor seizure. So... I decided we would avoid red beans and rice (the culprit). I waited a little longer (2 weeks) and then decided to reduce his meds again. Mr. Kay once again commented on how much better Tom was doing, and I fessed up again. We continued weaning him, but did it at a much slower pace. We saw tons of good developmental progress and awareness during all of this.

The new school year started, and I put Tom in a regular ed preschool, along with special ed kindergarten. At preschool, I was very concerned with what they were serving at snacktime, and I made sure to read the labels every time. One day, organic Graham crackers were served. I was used to the regular ones, which are dairy-free. The organic ones were made with brown rice syrup, which seemed like an unusual ingredient to me. That night, he had the worst seizure I've ever seen. We used Diastat for the first time, and ended up calling 911. The seizure ended before they showed up, and we decided not to go to the hospital.

We went to see our neuro that day (seizure was at 2 am). I'd been wondering about whether we should try gluten-free. Mr. Kay was against it. I was having nagging feelings, and I knew it would be a royal pain to do, so I asked our neuro about running the blood tests. He was willing to do it, and I even showed him the Gluten File to make sure he wrote up the right tests. (He does scoff at my theories, but he's been a really good neuro for us.)

The blood tests came back negative. By this time, however, we had talked with family and it dawned on me that my MIL is allergic to rice. Red beans and rice (2 seizures, and that was with brown rice), and brown rice syrup (1 seizure). I'm a little slow sometimes, but that seemed pretty obvious to me. So... no more rice.

Two months later, we were at my in-laws for Christmas. My FIL made coconut cake for dessert. It was the only thing that Tom ate that he hadn't had in a long time - pre med-free days. (Tom is a picky eater and I tend to make chocolate desserts.) I noticed he did a lot of drooling afterwards (which is an allergic reaction). And, at 2 am, another fairly nasty seizure. Scratch coconut from the list.

I decided at this point, that I wanted to know for sure about gluten, so I ordered the gene tests from EnteroLab. I realize that having the genes doesn't mean they're activated, but with all of Tom's issues, if he has them, I was sure they were active. He has two different versions of the DQ1 gene... the neurological genes.

So... I tried him gluten-free (February, this year). He has done very well, and we returned to the "guess what Tom did new today?" days that we saw during the Keppra wean. Even Mr. Kay has admitted that it's been a good thing. Tom's picky eating habits have greatly imroved with GF... he's still picky, but he's eating many more vegetables and whole foods.

This summer, we tried the girls GFDF. For Samantha, dairy upsets her stomach, making her nauseous when she goes to sleep. For both, gluten gives them diarrhea (which was never a problem before going GF), and makes them grumpier / more aggressive. For me, colds are not nearly as "snotty" since going DF. GF helped me lose 15 pounds, which was a good thing.

We have recently taken Tom to a DAN! doctor (Defeat Autism Now!). GFCF is the "autistic diet" and since Tom has done well on it, I want to know what else we can do to improve his life. The nice thing with DAN! doctors is they believe in GF without celiac. We drew a lot of blood, as well as urine, stool and hair samples for testing. We'll find out in mid-November what the results are. I'm especially interested in the ELISA IgG food intolerance results. I'm looking to those to tell me which other foods we should avoid for Tom as potential seizure triggers. The other tests are looking at vitamin / mineral blood levels (should we increase his supplements?), malabsorption, heavy metal excretion problems (vaccine preservative), and active viruses (whether he's fighting any bugs... particularly from vaccines). The last three seizures Tom had were due to illness (2 fevers and 1 stomach bug... lots of vomitting). I'm hoping to improve his immune system so that he doesn't catch every bug and then risk a seizure.