The Emesis Nemesis

I must say I am truly tired of the cyclic vomiting. Lamictal was supposed to be the culprit. Then the adjustment to Vimpat.....then.....????????????? NOT again?

Yep. Wednesday, The Vomit King named Brock, or shall I call him the Duke of Puke, had another spell with extreme sleepiness, followed by vomiting. Previously, when we were inpatient, I had a doctor ask if I ever had labs drawn at the beginning of one of these episodes. No. Who thinks of taking their floppy, projectile spewer, into the lab for a blood test? (Besides, the orders should have been written and carried out in a timely fashion when we were admitted into the hospital, DURING an episode, right?)

This time when Brock became sick, I immediately called the neurology group to ask if I should take him to get labs drawn. I figured I could gather enough towels, blankets, (tarps) to transport Brock to the lab.... No, the doctor said to wait until the following morning so trough levels of all the meds could be done. Thursday, I was up by 5am to get Brock up and going for his labs. He was very vocal and super happy and I was frustrated that once again, we may have missed sampling his blood at the right time. However, after the labs were drawn, my happy boy soon disappeared shortly after I gave his morning medications. He was falling back into the same pattern of being sick, yet it was a little different than the previous bouts when I blamed Lamictal. I again phoned the neuro group and left a message stating that Brock seems to have been "poisoned" after his morning meds kicked in.

The poor boy couldn't keep his head up, was pale and looked soooo sick! He was such a trooper and endured picking his sisters up from VBS, then running them to a b-day party. All the while he was just so pitiful looking. At least he was nice enough to spare the van, but he vomited numerous times and created plenty of extra laundry for me, once we got home.

During all this I had received a phone call with lab results. Brock's ammonia level was "elevated, but not that bad." I said WHAT IS THE NUMBER? Brock had been sick like this another time and his ammonia level was only "slightly elevated", but caused symptoms. His level this time was 59, with 40 being the top range of normal. I told the nurse to look in Brock's charts because back in February we had a similar event and we had to decrease his Valproic Acid dose.

OK. The doctor was to get back with me on what to do about changes to the Valproic Acid---that is the med that causes ammonia to build up in the blood. There is a fabulous drug/supplement, Carnitine, that is supposed to counteract the ammonia toxicity. Brock was on that way back when...... If you recall that is the drug that caused a lot of distress on his Make-A-Wish trip!?!? Brock had a 'paradoxical reaction' to the Carnitine, meaning it did just the OPPOSITE of what it was supposed to!!!!

Leave it to Brock.

So, we knew his ammonia level was high. We knew he was having symptoms. The remedy would be to decrease his valproic acid. But.....by how much? The doctor was waiting to see what the trough level was from the blood test that morning, and then determine how much to back off Brock's dose. Well, it just so happened that the lab DIDN'T RUN THAT TEST!!!!!!!!!!!!

I love drama, don't you?

After several phone calls, I had some encouraging news that the lab still had enough of Brock's blood to run the test. Neuro ordered it to be done STAT! I guess it really was ordered stat compared to the speed of a snail, or molasses, or whatever choice analogy for SLOW you would like to insert here.

That evening, I had no info so I took it upon myself to decrease Brock's V.A. dose by 1mL. Still no info by the next morning, so I decreased that dose by 1mL. I left a message for neurology stating what changes I made, but really wanted some direction on what to do before we went into the weekend.

When I received the call, I was instructed to "decrease Brock's morning and evening dose by 1mL". LOL. I had to laugh, wondering if they really were going to say that or just went along with what I already did? While on the phone, I also asked if I should increase the new Vimpat? "Oh, yeah you should do that too.....just do a half mL increase in his morning dose."

Friday and Saturday were some of the best days for Brock in a long time! He was alert and very vocal. It appeared he was responding great to the decrease in his valproic acid. However, Sunday he had a hard seizure after lunch, and yet another doosey in the evening. These 2 seizures broke a 5 day stretch with no siezures. :(

Since we are still working up to the target dose of Vimpat, I increased it last night and again this morning. I can tell Brock is sleepy from it and will give him a few days to adjust before another increase.

There is far too much trial and error with all these medications! I would love to say that Vimpat can hold off the seizures once we get up to his therapeutic level, but I hesitate to say anything since I had high hopes of other meds that ended up disappointing me in the end. In my opinion, Valproic acid seems to have run its course with Brock and does too much harm at an effective seizure-control level. I joked with a friend and said that we should get rid of it and then "spin the wheel" to select another seizure med to replace it with.....

Brock has a standing appointment with neurology (again), on the 16th. I'm sure we will have a lot to discuss.

Meanwhile, I need to get kid's school supplies lined up! I will soon have FIRST GRADERS! Yikes!

Until next time...............