The main theme of November was John's ongoing constipation issues, and very huge number of daily seizures. We also spent the entire month weaning the Tranxene, and ended the month on a pretty low dose.
Ever since John's hospital stay in October, John has been severely constipated. He had a couple of x-rays that didn't show us much. He was on a high dose of Miralax, and we were giving him suppositories and enemas as needed. We finally got an appointment with a pediatric GI specialist in early November. During this visit, she did a rectal exam and said that she didn't think John was constipated at all. We started to really get worried about this. Her exam, and the last x-ray both showed that John likely wasn't constipated. Then, what do you call this? She didn't have a good explanation, so she ordered some lab tests. John had to provide a stool sample, as well as some more blood and urine.
We got the results of these tests in late November. The notes from the lab said that one of the tests could not be carried out since the stool sample was too hard. Interesting, since the stool sample we provided was the consistency of water. I began to wonder if they tested the wrong sample. Anyway, the urine test proved to be worthless, as the keto diet screwed with all of the results. The blood test showed one interesting piece of information - his IgA level was very, very low. This can be a sign of celiac disease, which is something we've been thinking about for awhile. For a good 10 minutes, I really thought we had the answer to this whole thing. After discussing this with her colleagues, she told us that John doesn't show any of the normal signs of celiac disease. She went on to say that 1 out of every 600 kids just has a low IgA. It seemed to me that there had to be more to this than just coincidence. I later did some research and came to the conclusion that the test is just majorly flawed if you don't take in a decent amount of gluten in the weeks prior to the test. Of course John gets almost no gluten on this diet. I sure wish the specialist would have known this, so we could have spared John the unnecessary blood test.
Anyway, she was completely stumped as to why John was still having all of these problems. She ordered a Barium enema to be performed in December. This is where they coat the intestines with Barium, then do an x-ray so they can get a very good picture of what is going on. She wanted to test for a condition called Hirshprungs disease, which is physical deformity of the lower intestine. This didn't seem reasonable to us - surely the problems were directly related to his high fat diet. Oh well, we agreed to the test anyway, just to rule this out.
Also, in November, we started doing the diet Gluten free (Nov. 5) and dairy-free (Nov. 24). John was then probably on one of the most restricted diets of any human on the earth. None of this seemed to have any effect on his constipation (or whatever it was) or his seizures. In fact, John was averaging over 70 seizures a day for the first 2 weeks in November. He did go down pretty abruptly to about 50 seizures/day for the last 2 weeks in November. This sudden change in seizure frequency didn't directly correlate to anything. It could have been due to less meds, or the gluten free, or just chance. We just have no way to know.
The one really great thing that happened in November is that we greatly reduced his Tranxene dose. We went down by just a quarter pill every 2 weeks. This may seem really slow, but in the whole scheme of things, that was quite quick. Tranxene is a benzodiazepine, and is considered more addictive than heroin. Kids that are on it longer than a few months can sometimes have a huge increase in seizures when trying to come off of it. In fact, there are a few parents that we were in contact with that had their kids go into status when coming off a benzodiazepine. This means that the kid was having non-stop seizures, sometimes for days or weeks at a time. They often have to put the kids in a coma to get them out of the status. We wanted to avoid that at all costs. No doctors should be prescribing this drug for anything longer than a couple of weeks. There are countless studies that show this. I just don't think all of the doctors keep up on the research.
John's routine blood work showed that his CO2 level was way too low. The diet can cause a lowering of CO2, and the Topamax can also do this. The two treatments combined really put John at a level that nobody was comfortable with. Even though you should never adjust 2 meds at the same time, we started getting rid of the Topamax at the same time, albeit very slowly. Topamax comes in a capsule, and consists of about 120 small white balls. We would take apart the capsules, and remove 1 more ball each day. At this rate it would take us 4 months to wean just one capsule, but it just felt good to be doing "something" about it.
As for the diet, we stayed at a 3.5:1 ratio the entire month. We did increase calories from 915 to 950 in the middle of November, as John didn't seem to be gaining any weight at all. At this point, he was eating everything we gave him, so he had precisely the calculated number of calories every single day.
