Friday's appointment with Bug's neuro was pretty routine. We discussed the new medicine, Sabril, that we are going to be starting soon. She will continue on the diet and the Clobazam while taking the Sabril. We also talked about Bug's vomiting and no bowel movement since Tuesday. He did confirm that Rayleigh is having Infantile Spasms. The Ketogenic Diet that Bug is on is a very successful treatment for Infantile Spasms. That is, when their ketones are at the highest and the child is in full ketosis.
That being said, if Bug isn't able to eat anything on this diet, or at least keep it down, then we won't even be able to give it a chance. Right now none of Bug's doctors (pediatrician, pediatric neuro, ER, dietitian or pediatric epileptologist) think it is the diet causing the vomiting. Michael and I do not think so either. And if it was the diet the vomiting would be better by now because she really hasn't eaten in 2 days.
We spoke with the on-call pediatric nurse at the Baptist Pediatric Group Saturday night and she said that it really sounds like a bowel obstruction based on the timing of the vomit - eat and then vomit 3-4 hours later. She said that that is how long it takes for the food to make its way down but if it gets a point and is blocked by stool it will come back up. She said that if Bug didn't have a bowel movement by the next morning to go ahead and take her to the ER so they could do a second x-ray to compare to her first one.
We ended up going to the ER Sunday morning. Bug was in good spirits, a little more calm than usual but not quite lethargic. The x-ray they did Sunday did not show any obstruction and the doctor diagnosed Bug with constipation and vomiting due to gastritis. The doctor said to keep her on fluids for 24 hours and do a suppository every 12 hours to help her pass the poop that is in her bowels. She had 2 small bowel movements that day and seemed to be feeling better after that!
Bug went all day Sunday vomit-free and was able to keep 1 snack down! But then she threw up during lunch yesterday. She did have a big poop Sunday night so we thought we might be close to the end of this ordeal. BUT, wrong again, she threw up a small amount during medicine that night. Pretty much just acid. We think she gagged herself this time because she's been using her tongue to block the medicine and it seemed like her tongue gagged her in the process :(
At that moment we decided we would be more strict about the 24 hour fluids only. So all day today she drank MIO flavored water and Powerade Zero (both Keto approved drinks). She didn't drink as much as we would have liked despite our frequent efforts but she never threw up so if she's up to it she'll have a sugar-free jello snack for breakfast with her vitamins.
Weird thing though, she hasn't had any of the bigger spasm seizures and we haven't noticed any of the smaller ones either in the last 3 days. Not sure what to make of that...
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