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
6 comments:
It’s wonderful to read another update! Thank you. And it’s also fun to have you on Twitter.
A bit off topic: If you need help with the formatting, any time, but Blogger has both, an HTML (source) editor (“HTML” to the upper left) and a WYSIWYG editor (called “Compose” for some reason). The latter should be pretty intuitive.
All the best to you and your family!
Thanks so much for telling me how to format! That was making me so frustrated! I couldn't figure out how to not make it one big paragraph. Thanks again--and I'm having fun on Twitter!
Wonderful! I’m always happy to be of assistance.
That is one big kid!
I'm glad to hear the surgery/trauma stuff is getting better, and hoping things go better with meds. Meds are tricky!
As to the global developmental delay, have you considered Applied behavior analysis (ABA)? I only found this blog today, so I don't know if you've addressed this before. It is best known for its autism results, but other DDs can be affected significantly too.
I just wanted to pop in and say it's incredible how strong you all are. I respect that so incredibly much from you, ma'am. You go through so much, yet are still such a wonderful woman. I know what it's like to struggle with things myself, as I've lived with crippling depression and anxiety, and my mother has fibromyalgia and depression. Some days I just don't know how to keep going, and just want it to end. But I keep fighting. I understand you may not be letting it show so much, but you seem to be handling things very well. I admire that, and hope I can learn from that, and try to take some of the strength you're sharing. Thank you so much, and I plan to keep following this blog.
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