We continued to wean the tranxene in December. We saw a slight increase in seizures with each step, but nothing dramatic. And, after a few days, he would stabilize. We were able to completely get rid of the Tranxene by Dec. 17. I swear we will never, ever, put John on a benzodiazapene again for more than a couple of weeks. That is a terrible drug that didn't help the seizures at all, caused him to become dull and slow, and caused more seizures when weaning. We were very, very happy to have that behind us.
We also continued our ridiculously slow wean of the Topamax throughout December. By the end of the month, he was on just over 30mg day, which is far below any therapeutic dose.
The big story of December was John's ongoing serious constipation issues. We didn't know it was serious, of course, until John had his barium enema on Dec. 9. The technician looked at John before we even started the test and said "he is very, very constipated". I told her that the x-rays and the GI specialist didn't think he was. She reiterated that there was no question in her mind that John was severely constipated. John did very good during the barium enema. It took probably half an hour. Yoshie and I were able to watch the screen the entire time. It was shocking to see just how backed up John's intestines were. She traced around his intestines showing how far back the blockage went and it seemed to never end. There were many "stones" in there as well. And, the intestine was completely stretched out. She said she had seen worse, but not too much worse. It's unbelievable to me that the GI specialist (and x-ray tech) could have completely misdiagnosed this. Arrgh.
The barium enema was on a Thursday morning, and the results were to be sent to our GI doctor immediately. So, I called the GI doctor on Thursday evening to see what the treatment would be. She said that she hadn't received the results yet, so she couldn't comment on it. I explained to her that I was in the room and could say unequivocally that John was very constipated, but she wouldn't take my word for it. I called many times on Friday, to the point I irritated the receptionist. Finally, at about 4pm Friday afternoon, I got a call back from the receptionist. She said that the doctor had looked at it and that the barium enema showed that everything was NORMAL!!! It was a pure lie, and I let them know it. Ten minutes later, the GI doctor called me back and apologized for the "mix-up". Sure enough, John was constipated. We were to give him enemas twice a day for a few days. She thought this would be enough to clear him up.
9 days later, we were still giving him these enemas, and he was still really constipated. She advised us to quit giving enemas and to start giving twice the adult dose of Miralax. We did this throughout the month. By the end of December, it seemed things were finally getting better. Far from normal, but at least he was going on his own at this point.
John stayed on a (dairy & gluten free) 3.5:1 ratio on the diet until Dec. 28. At that point we went down to a 3:1 ratio to try to help with all of his stomach issues. I also picked up a 1/10 gram scale on eBay so we could weigh his food even more precisely. We finally gave up on the dairy-free part on Dec. 31. No reason to keep doing that, as it wasn't helping.
Of course Christmas is also in December. Santa brought the kids an inflatable bouncer. He must have thought John could play in there while his parents watched from the outside, thereby giving John some freedom and his parents a break. It was a great idea, but John just wasn't very interested in the bouncer. At least his sister liked it.
