Hi. We’re still here. Thanks for sticking around.
Some of the more significant updates for the boys (each of which may get their own post with a better update another time):
The ketogenic diet is working well at reducing infantile spasms. We chart them daily, and they will now go days at a time without having one. For comparison, prior to the diet, Landon was having 3-5 a day, and Nolan was having 5-12 per day. So that is a clear reduction and is great news!!
It has been mysteriously unpredictable. They need to be in “large” status (80+ ketones in their urine test). And sometimes they are. And sometimes they are moderate. And sometimes they are small…Or even trace. Throughout the ups and downs they were on 24 hour feed with their pumps, with a closely measured liquid diet. Nothing was changing…so the fluctuations didn’t make sense. Nonetheless, even when it wasn’t showing up in their testing…they were maintaining a reduction in spasms.
The downside…they’ve been sleepier. This is similar to the effect we see from adding a medication. That was disappointing, because I was hoping that the diet would be an effective seizure treatment that would NOT cause drowsiness, and allow us to perhaps even come off of a medicine.
We go back for a follow up at the keto clinic on May 13th. It will be interesting to hear their thoughts.
We met with an equipment specialist through our Early Intervention program. Great things are happening here!!! I’ll elaborate in another post when I know more about timing and have some photos to share, but each boy will be getting a stander and a high low chair for in the house. THIS IS VERY EXCITING!
I’m trying to experiment with more real food. The boys have had minimal exposure to real food, so we are taking it slowly. As of 6 days ago, I am making a breakfast blend to feed them via tube (often eggs, avocado, butter, ground flax seed, broth, and water as needed). It has to remain within their ketogenic diet ratio, so everything is measured very closely. Reviews so far seem to be that they enjoy the experience. Perhaps because we are serving it warm, and I have to think their little systems know they are getting a treat. If this goes well I can continue to expand this to more of their day. But we’re sticking with baby steps for now.
This deserves its own post another time soon too, but the crochet fever is picking up. My coworkers are brushing up on their skills, or in some cases learning for the first time. We should soon have a little shipment of baby hats to send to a NICU. Thank you Crystal @ Crochet for Lissencephaly Project for the inspiration!