My Mysterious Boy Named Brock

I would much rather be posting all the summer pics that I have, but instead I feel the need to update regarding Brock.
Last week I received a phone call from his neurology group to inform me that our standing appointment with the Epileptologist would have to be rescheduled. Ok, so if not on July 27th, then when was the next available? My memory shut off when I heard the word "October." I said there was no way we could wait that long to see the doctor! (Brock's seizures have been out of control, worse than ever, AND he had developed a pattern of cyclic vomiting. From my records, it was occurring every 2 weeks.) Ok, so if Brock couldn't get an appointment right away, I asked if possibly we could schedule with the Nurse Practitioner? Yep. The very next day!!!
Tuesday morning, I loaded Brock up and we were off to Peoria. I noticed that he was very tired and slept most of the drive. Well, who could have predicted that Brock would have a vomiting spell in the elevator just outside of the Neurology office? I told the receptionist that he was having one of his sick episodes and she must have notified the doctors, because in a matter of minutes Brock and I were surrounded by the epileptologist, a resident, and nurse practitioner. Brock was showing off with his vomiting and lethargy in high gear. They placed us in a room and said they "needed to put there heads together and get a plan."
The plan was a hospital admission with a series of tests.
Our inpatient stay was frustrating to say the least.

• Brock had blood work done. All labs were ok. (Although, I later learned his neutrophils have been dropping--but I'll look into that later)


• Brock had a CT. It was unchanged from his previous scan 2 years ago. (The neurosurgeon resident decided 2am was the perfect time to report the good news of the CT report)


• Brock had a UA. It was negative.


• Brock had an EKG. It was fine.


• Brock had a KUB. It showed no blockage


• Brock had an EEG. GUESS WHAT??? The stinker didn't have a seizure the entire time it was on! Brock did end up with some sort of chemical burn on his forehead and surrounding areas. I don't know if the glue or acetone did it, but he was in pain and it was pitiful.

The Neurologist on call just wanted to load Brock up with Vimpat right away. I refused and said that we were admitted so we could find the reason behind all the cyclic vomiting. Why would I add another variable to the mix?

Well, thank goodness I had my calendar with me. It took 2 hours of sitting at the nurses station, with the neuro, going day, by day.....naming when Brock had seizures and what dose of medications he was on. The man was very condescending, but in a passive old-man sort of way. Hard to explain. He did not want to entertain the idea of one of Brock's medications causing the issues. The med levels were "sub-therapeutic and the doses weren't even at the recommended dose/kilo."

I became so angry and found it very hard for me to keep my composure. I told the man, that I didn't know about all the levels and doses that were "normal", what I did know is that as I increased Lamictal, Brock's seizures got worse, not better. And, he had never had cyclic vomiting prior to starting Lamictal. My unprofessional opinion lead me to think that Lamictal was our "bad guy."

He may have just wanted to shut me up, but the doctor ended up writing orders to taper off the Lamictal. { Lamictal could be contributing to Brock's neutropenia (low white count).} In place of the Lamictal, Vimpat was added.

Brock bounced back and was acting well enough to be discharged on the 14th. Since we have been home things have been ok. Still seizures, but that is to be expected considering we are in transition of meds. Today, however, isn't going well. This was Brock's first increase of the new Vimpat and he was extremely tired after his morning dose. I expected that. What I didn't expect was the V-O-M-I-T-I-N-G!!!!!!!!! Seriously??!?!?!!?!?!?

Vimpat has side effects of nausea and vomiting. So, it is the Vimpat that made Brock sick. Right? Today was an increase afterall....... The neuro agrees with me and I've been advised to go back to the intial dose and wait and see what happens. Meanwhile, Brock has been barfing and wretching all afternoon. He won't keep down his anti-emetic, and the boy just looks absolutely pitiful. I think I want it to be the Vimpat causing this. However, I hope the vomiting will subside and allow us to try this drug as an effective seizure control drug.

Oh my! Who knows what our immediate future holds. I've packed a bag in hopes I won't need it for a hospital stay.

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