After spending Sunday in the ER with Bug and following the doctor's instructions we weren't getting any better so we gave Dr. Albiek, her PCP, a call. His nurse got us an appointment for that afternoon. We saw him and he was genuinely concerned and wanted to get to the bottom of this. He was worried that she would be malnourished and dehydrated from vomiting for 8 days straight. He went over the notes and tests that were done in the ER and he checked her ears, nose and throat. He said that her throat was red and her gums and tongue looked sore. These are all signs of someone in pain from vomiting so much and he took a swab to test for strep. No strep so he recommended Prevacid.
He believes that the vomiting may have started as a common gastritis but then after continued vomiting along with her high fat diet she was producing too much acids and now with the soreness in her mouth and throat she would gag easy and it would be painful to swallow.
He said to give her Advil as needed for her mouth and throat pain, Prevacid once a day and lots and lots of fluids.
He send us upstairs to the DLO lab to draw some blood to check basic levels and check for dehydration. This was around 4:30p, the end of a work day for him.
Dr. Albiek said that if her levels were abnormal or she showed to be dehydrated he would have Bug admitted straight to the pediatric floor that night to get this resolved.
He called us at 6:30p to let us know that her levels show that she was slightly dehydrated. He asked if she took her Prevacid (Yes, at 5p) and if we have tried to give her fluids orally (Yes, we got 2 ounces in her since we got home and then she fell asleep and was still asleep when we were on the phone with the doctor). He said he would call back at 8p and for us to try and get a few more ounces of water in her and to try and feed her if she wakes up.
We were able to get Bug to drink 3 more ounces of water by the time Dr. Albiek called. He said that was wonderful news and that we would NOT have to take her to the hospital if she was keeping the water down. He told us to just do water and Powerade Zero for the rest of the night and to try a Keto yogurt snack in the morning. The Prevacid should fight the acid for 24 hours and he wants us to continue that once a day for one week and then to talk to Bug's dietitian about continuing it for the duration of the Ketogenic Diet.
Dr. Albiek called again the next morning around 10a to check in on Bug. I let him know that Bug had successfully eaten a snack and was now drinking from the bottle on her own again (when her mouth was sore she wouldn't suck on the bottle so we had to squirt the water and Powerade Zero into her mouth). He said that that was great news and to just do 2 snacks that day with lots of water and Powerade Zero and continue with Prevacid and gradually work our way back to 3 full meals.
Today I am happy to announce that she ate 3 full meals!
She hasn't gagged or vomited or anything since Dr. Albiek prescribed Prevacid. He is such a wonderful doctor and knew to tackle a few things at one time (acids, throat/mouth pain, dehydration). I cannot thank him enough for making my baby girl feel better and could not recommend a better pediatrician!!
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...
