So I guess I have some back-tracking to do to catch everyone up..
On Monday, the 15th, Landon had his Botox injections. We were told that it would start to work over the next few days, and that in a week if we had not seen any changes then it was not successful. After 2 or 3 days we saw very subtle differences. Landon was passing what appeared to be normal looking stool (which was a first, his stool has always been completely liquid and very undigested looking.) We could tell during the irrigations that the Botox had loosened things up like it was supposed to, but despite the improvements, Landon's bowels were not functioning any better. We still had to do 2 very long irrigations of 3000-4000 mL of sodium chloride and it still took 45 minutes to an hour to get him cleaned out. After waiting the full week, I emailed Dr. Levitt and let him know that we could see changes, but nowhere near to the extent that we had hoped. He forwarded my email to GI and they decided as a team to try something new. They recommended we start a low dose of a stimulate laxative called Senna once a day.
For those that know me, they know how crazy this makes me. I'm a very natural parent. Since having the boys, I stopped using household cleaners containing chemicals, starting buying all organic, steroid, hormone free foods, and the boys use special chemical-free bath products. Carson or Austin neither one take medications on a regular basis, and when they do become sick we don't "over medicate", we only use Ibuprofen if a fever is very high. So you can imagine what a change this has been having a child with a chronic medical condition requiring some form of medication his entire life. Medication has just became something I've had to learn to deal with. I do my best to avoid what I believe to be the more potentially harmful medications in favor of safer alternatives, but at the end of the day there is only so much I can do.
I had to push my worries aside and just deal with the Flagyl, as much as I didn't want to, because without it Landon ended up so sick on his birthday. Laxatives were another area I wasn't thrilled to get into, because it's great if they work, but then you are likely looking at long term use. I researched Senna, and found it to be safe enough that I had no objections. It is something available over the counter, and to my surprise (and delight!) it costs less than $5 for a 12 day supply. We are used to every trip to the pharmacy costing anywhere from $40-$200, so $5 is such a great surprise!
The particular form of Senna that we chose is Exlax chocolate squares. Landon takes one square (15 mg) at bedtime following his irrigation. After starting this, it was like a miracle. I could mistake Landon for one of our other boys when they were this age! His freqency decreased from 10-12 tiny BMs per day to 4-5 large ones. We have used the Senna for almost 2 weeks now and this is continuimg to improve. Yesterday, Landon only had 3 large bowel movements. He stayed clean throughout the morning and afternoon (which also helps his diaper rash issue) and then had his bowel movemnts over the course of the late afternoon and evening.
Since the Botox, we have been tapering off the irrigations and Flagyl. We dropped the morning irrigation and only do one at night, which takes less than 800 mL of solution because Landon is already nearly empty! We are down from 4 doses of Flagyl per day to only one, and next week we are attempting to go off of it altogether. This is the first time in a long time that I have been optimistic that this could work. Even if it doesn't, we can at least go back to a small maintenance dose which is an improvement from where we've been.
Landon's development is also coming along. He is still struggling with the balance and strength to walk, but has made several other major acheivements. He is eating 100% table food, with only a few dietary restrictions. We introduced some dairy and small amounts of whole wheat, so he is no longer completely dairy or gluten free. We are still avoiding constipating foods, but letting Landon at least try everything he can and then trying to add more laxative foods to balance it out.
Another great accomplishment Landon has made is drinking from a sippy cup. He still takes a few bottles a day to stay hydrated, but he is taking in about half of what he needs through a cup. I'll end this post with a cute picture of what else he has figured out he can do with a sippy cup ;)
