Oliver had a rough week last week. For the past month or so his seizures have been increasing to every 2-3 days. We had asked our keto team what the next best step would be…I wanted to decrease his diet ratio to 3:1 because I think maybe he does better at a lower ratio. He's been on the diet for almost a year now (WOW!) and they say their bodies get better at making ketones the longer they are on the ratio...also...small babies/little kids do better on a lower ratio most of the time. The keto experts wanted us to try increasing the fat content and going to the 4:1 ratio since we were already so close and since it would be best to force the extra fat content on him from the 3.5:1 ratio rather than going up from 3:1 ratio. So we started on Sunday August 21st and it didn’t go very well. He didn’t eat much and when he did he just threw up the food. From Sunday to Wednesday he successfully held down one meal (220 calories!). He would not drink. He was lethargic and dehydrated. I had to pick him up early from daycare because he would not eat/drink and was crying all day. I brought him home, gave him some apple juice (not allowed on the diet) and some pedialyte and he instantly perked right up. The nurse said she didn't think he was too far into ketosis, or experiencing acidosis but I treated him as though he were. Whether it was that or just dehydration, the juice did the trick. After a few days I decided to put him back on the 3.5:1 ratio. We talked to the keto team and they agreed to keep him at 3.5:1 for now and repeat his blood work (which we did on Friday) and then talk to our neuro regarding next steps. We’re waiting on blood results now but I just think a lower ratio would give him some GI relief and maybe allow him to eat better and put back on some of the weight he’s lost.
On Friday we took him in for a GI scope to see what’s going on and if we could shed any light on his discomfort. They did biopsies so we will have the results on Wed /Thurs of this week. So far our GI doc has said his esophagus and bowels look fine but there was some inflammation in his stomach , which could be the source of the discomfort. For now we are increasing his zantac dose and hoping that being back on the 3.5:1 ratio will help him be more comfortable. My hope is that they let us try the 3:1 ratio. Even if it doesn’t help the recent seizure increase , my hope is that it will help him to be more comfortable, have fewer GI issues, and maybe gain some of the 2-3 lbs back that he’s lost. Also, while he was under the anesthesia, they removed his big toenail on his right foot since it’s been ingrown for a long time now and constant soaking/ointment/bandages have not fixed it. So at least he has some relief there!
Yesterday was the best day he's had in awhile and oh boy were we excited. He's an adorable baby even when he's crying and angry, but when he's happy there is nothing better in the world. The old saying "smile and the world smiles with you" certainly applies to our little Ollie. He brings us so much joy in his happy moments, his smile and laugh are contagious. He was eating pretty well and drank a bunch and I really think that made the difference. It's terrifying to think this diet may not be the miracle we were looking for, but in my gut I feel that we at least need to try lowering his ratio to get him more comfortable and eating and drinking better. Even with his increase in seizures I'd rather him be comfortable and seizing than miserable and seizing. Despite the increase in seizure activity he's making slow and steady progress.
Oliver is a rolling machine! He laughs! He smiles! He listens intently when I sing him silly songs! That alone is worth the struggle with the diet.
We started vision therapy a few weeks ago and we're working on creative ways to get his eyes engaged and focusing more. We also received some great news from EI, Oliver's equipment has been approved and in just a few weeks we will have a stander and a high/low seat for him to use at home (for feeding, therapy, sitting, etc). We are thrilled, and even though it took much longer to go through this process it also means we don't have to pay anything additional over our monthly EI contribution! I can't wait to get Oliver standing up and checking out the world.
