Captain Complicated

We went back to the Emergency Room today. It's a good thing we were having a Dravet family over for dinner tonight, they totally understood our need to cancel an hour before! Cole has been a bit "off" lately, and just can't seem to bounce back from his previous illness. He is drinking like he is storing up for a two year supply and having copious amounts of urine. I have lost count of how many complete outfits I have changed, sheets I have laundered, puddles I have cleaned up off of the floor and how many times I have scrubbed the couch. His blood sugar has been low, although I have only checked it a couple of times at home. Each time I come towards him with the lancet, he gets more agitated...which equals more seizures. I can just tell most of the time.

The yo-yo diet he has been on this week has not helped. At the beginning of the week, he was doing splendid off of the regimented, intense diet that has dictated his life for almost a year. There wasn't enough increased seizure activity to worry. We decided to just do the Modified Atkins Diet to hopefully get some of the benefits of keto, but not put as much stress on his liver, as we are certain that Depakote is in our future. Our neuro agreed, he is not a real fan of the diet anyway. He was shocked when I told him that it eliminated his drop seizures. Brian was ready to smash the scale! It has been nice not having to weigh every thing. As the week progressed, he started having lots of mucous in his stool and more seizures. Okay, maybe we shouldn't go off of the diet. So, we decided to go back on...kind of. We saw the pediatrician the next day to talk about some of the things that were happening, and he thought Cole's intestines were fighting back, because they are not fully healed after taking a beating with his gastroenteritis. I don't blame them, they have had a rough couple of weeks ;) The doctor suggested we eliminate all dairy, fruit, simple sugars and carbs from his diet. Um, okay? When we were "off" of the diet, he was having some carbs and fruit. When we were "on" he was having fruit and dairy. Sugar wasn't really a problem, but basically all we had left was protein. So, for two days, all Cole ate was eggs and meat...and cried a lot. This also caused him to go back to having diarrhea. Apparently, his insides were not too happy about that either. The doc wanted stool and urine samples, but it was the end of the day and Cole was not cooperating. The next day, we spent 6 hours going to see the g-tube specialist (he needs a new size tube because he has lost so much weight) and he decided to not be cooperative with the samples then either...I swear he does it on purpose sometimes! Then we were to Saturday and just said we would try again on Monday.

So today he was lethargic in the morning, and even fell asleep in my lap. That just doesn't happen. He continued with the signs of low blood sugar and had the excessive peeing problems. 4 complete outfits in 2 hours, oy! After the constant jerking, we decided we might as well go in and get his labs checked today, instead of trying to get them tomorrow outpatient and not getting the results until Tues. We were worried about a UTI, or some sort of bacterial infection. We packed a bag and headed out, to the hospital that is nearby this time. I was impressed! They totally get an A from me! On a Sunday, we were shown to a room within 10 minutes and got multiple tests done in a couple of hours. The doctors and nurses were attentive to what we were saying and took our suggestions. Plus, it was cleaner than the other hospital! The Child Life specialist came in with toys in the first 20 minutes and was there to help with the catheter (never fun). I am certain we will be back. Plus, they have valet and WiFi; bonus!

We called the dietitian back in UT and get this, she answered! She suggested that we give him keto foods, just not in weighed out portions.

After all was said and done, there was not a lot they could do for us. We know that his chemistry's came back pretty normal. He has 80+ ketones again, after he was totally negative 2 days ago. He had a full abdominal ultrasound, checking his liver, spleen, pancreas and kidneys-all normal. His UA came back without signs of infection. He doesn't have a fever. We just have to wait for the results of the stool culture. The on-call neuro suggested that he go up on his Keppra to 500 mg twice a day. I just nodded my head and did not even get into Keppra rage or all of the up/downs we have had with his levels. We are not going to bring back Angry Elf again if we can help it! His blood sugar was 50, but he was up and roaming the halls, doing what he does best...chatting up the hospital staff. Brian saw our nurse pointing to him and whispering to others that his blood sugar was 50. Mini Hulk strikes again! ;) My strong little boy.

Theories:
*Cole has a kidney stone that didn't show up on ultrasound
*A bacterial infection that is hanging out in his intestines
*When it rains it pours
*With his poor body awareness, he doesn't understand being hungry. He could be hungry and just wants to drink all of the time, knowing that it makes him feel better. He has always wanted "juice" for comfort, and it is also making him feel full. Thus, all of the drinking-because he just doesn't feel good.
*He is just trying to get us to go to Miami sooner
*He is having pre-stage diabetes
*He is moving into another stage of Dravet and is just having more seizures, because he is having more seizures
*Someone far away did something to someone else and karma got re-directed towards Cole
*His body is just freaking out because it is off of the diet and wants to be burning fat again
*The phase of the moon
*The Jazz just went downhill, so Cole is going downhill too

Some of these are far fetched, but really it is kind of what they said to us. I just love it when they say he's complicated. Yeah, thank you Captain Obvious! The message was, We don't know what is going on, but something seems to be going on. Good luck finding out what it is.

So, now we are home chillin' on the couch and watching Caillou. Thank goodness for DVR. Cole has his head on my shoulder and is nursing a sippy cup full of water. We'll see the pediatrician again to get the lab results and see what he thinks. I guess we'll just start playing detective again tomorrow. It seems like no one can give us a straight answer. I just want him to feel better.

*Sorry for all of the mentions of bodily fluids, etc. I use the blog as a medical record sometimes and come back often to see patterns.*