More of the same.....

Monday really took a turn for the worse..... Brock ended his day with a harsh seizure, while I was holding him, around 6pm. After it had passed, I noticed how feverish he felt, and thought it was close enough to time I could give him another dose of Motrin. Jason came home from work just as I was pushing the Motrin into Brock's feeding tube.... it was then that I noticed a twitch in Brock's right finger.

FREAK OUT mode set in and I practically ripped Brock out of his chair and administered his Diastat. Jason then watched Brock while I ran to gather a few things and prepped for a trip to the ER.

The Diastat did nothing. Full blown seizure. So.... I took off with Brock to the ER, seizing the entire drive. I don't know that I have any "pull" in the ER, but I called and said I was about 5-7 minutes out with Brock, please have the Versed and oxygen ready. They likely thought I was a nut case, but it made me feel better. And......once I got there they recognized Brock and me. ;)

Numerous attempts at an IV, but finally Versed to the rescue, with the total seizure only lasting 35 minutes. The worst part was that they placed us inpatient for the night. They performed a chest xray that showed a possible infiltrate in his right lung area......likely an aspiration. I presume it was from a seizure he had last week in which he woke from a nap and vomited while seizing. At that time I told Jason, that it looked like Brock aspirated, but then time passed and nothing became of it......

We were released from the hospital Tuesday late morning. Brock was prescribed Augmentin for the possible aspiration, but his labs didn't point to infection and the likely suspect to his fever is some nasty viral issue. Brock still spiked a temp in the night and I was up with him for a couple hours.

This morning he had a standing appointment with Endocrinology and since it is right next to Neurology, I was able to get fit in there for an appointment as well. Endo was uneventful.....Brock's hormone panel doesn't look great and his adrenal glands are overactive, but he isn't presenting with any physical signs/symptoms that would cause concern. All we need is to follow-up every 6 months and do some labs on a regular basis.

The Neurology appointment was VERY informative. Obviously, I am very upset with how the seizure meds are affecting Brock, and still not providing seizure control. There are 4 main options that we discussed and I am evaluating each of them further.

1. Adding Lamictal. Yes, it would be a 4th med for the moment, but we are to very SLOWLY build up to a therapeutic level to prevent side effects. If Brock tolerates Lamictal, we will build to a certain dose then be able to decrease and wean off one other med. I wanted off the Valproic acid, but still have much opposition from the Dr. on that one. Therefore I chose Topamax. Topamax is way too sedating for Brock and it didn't offer seizure control, even with hefty increases.

2. Having a "Drug Holiday." This was a completely new concept to me and I still don't know all the exact specifics. However, the concept is for Brock to go inpatient (ugh, I know) and be taken off ALL of his seizure medications. He will then be under observation with a video EEG. Supposedly, we then watch for seizure activity (both clinically and on the EEG) and add medications via IV and see how everything responds. As I said, I don't know all the details, but there is something so enticing about this concept because I have often said it would be so great to start with a "clean slate!" But, as a friend of mine pointed out....'what if Brock doesn't seize while you are inpatient?' I would hope we wouldn't be there indefinitely?????

3. Modified Atkins Diet. Many in the seizure world have heard of the Ketogenic Diet that is based on a diet lower in carbs and higher in fats and proteins, and has the patient in a state of ketosis. Our nearby hospitals do not offer such a program to place children in ketosis and we would have to travel to St. Louis and be inpatient for at least a week. The modified Atkins diet is a derivitive of the Ketogenic diet, without the ketosis. From what I learned today is that a modified Atkins diet can be a lifetime diet. The Ketogenic diet perhaps could be more effective at breaking the cycle of uncontrolled seizures, but it isn't meant to be on for more than a couple years or so...... We are going to get Brock evaluated by a dietician at OSF Children's hospital and see if it is worth pursuing.

4. VNS. We have tossed around the idea of doing this,and finally I want to go a step further. VNS is never a quick fix and it typically takes 6 months to even know if it will be effective. Brock is being referred to a neurosurgeon and we will have him evaluated to see if he is a good candidate for VNS.

Needless to say there is a lot to digest.

Brock is steadily getting better, but will miss yet another day of school tomorrow. Cora was able to return today and seems to be recovered from her bug. Until next time...........