Soren and I went to see his neurologist and dietician 3 weeks ago. And while I was pleased that he was averaging 4 to 6 seizures a month, they wanted better.
The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.
She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix.
But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.
So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time).
The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.
To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him.
But now that we have the G-tube, I could give it to him easily by injecting it!
I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.
Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive!
But our boy is back, doing hard work, eating his snack, happy and smiling!
Amy
