Down, but not out.....

Ok, so lately I have to admit, I've been feeling a little defeated.

Lamictal has not been the drug I had hoped it would be. I was seeing improvement with Brock's seizures, but as we titrated up his dose he would still have seizures right before an increase. So, logically, we were told we could increase a day early. Well, Brock--being Brock--decided to out smart us and still had more seizures prior to the increase. His epileptologist suggested that it would be safe to do an increase with as few as 5 days in between.

Do you think we can outsmart those stinkin' seizures?!?!?! Nope. He had 2 very hard seizures the day of an increase, and the day following. There continues to be the little ones as well.

Phooey!

I had labs drawn for Brock on Wednesday, hoping to find something that could be causing all this seizure activity. The great news is that he provided more than enough blood with only one needle stick! Are you kidding me? I was bragging all day about that accomplishment, as I can't recall when such an event has ever occurred! But, my joy was short lived. The lab results didn't show anything abnormal. We still have a couple med levels pending, but I can't think that those results will mean anything............

I've been thinking more and more about what we can do about these wicked seizures. I don't think I'm ready to subject Brock to the VNS, and frankly I don't know if I am all that impressed with the statistics of it's success. The Keto diet would require so much with regard to traveling and staying inpatient in St. Louis, and with his kidney issues, we shouldn't go into full ketosis. So, I'm left with the drug holiday option..... I can't believe I would be "requesting" to go inpatient and "induce" seizures, but I would truly love to get Brock free of these drugs and start over! My personal theory is that one of his seizure meds is just not being a "team player." We gained control over the right-sided seizures with the addition of Valproic acid....seeing only a few breaking through when Brock is really ill. However, these newer left-sided ones have become just awful, with the addtion of 2 extra drugs! His seizures are so violent and hard to watch. The only consolation is that when I see one come on, I watch the clock and know that they will resolve on their own. However, when they are going on for close to 2 minutes, I begin to wonder if there will come a time that these boogers won't stop on their own? Ugh.

Brock has a followup with the epileptologist at the end of July. We will decide then, if not sooner, if we will take another step in attempt to control Brock's seizures. Tomorrow is yet another increase of Lamictal. Originally, it was going to be the final goal---25mg twice a day. I have to wonder it the dr. will just want to keep increasing? Where does it end with the meds?

Sorry for the Debbie Downer of a post. (Dawn, if you are reading,that reference is for you!) My mood has been pretty foul lately as I have been dealing with poison ivy! A couple of weeks ago I was weeding a flower bed and got a small patch of poison on the inside of my wrist/arm. It drove me insane with the itching, but I thought such a small area should heal on it's own. I should have known better based on a previous encounter with poison ivy, but I held out--hoping everyday would get better. It only got worse. On Monday, I broke down and went to the doctor. I was given a steroid shot, but the only thing that did was give me a monstrous appetite! By Thursday, I was ready to chew my arm off so I opted to go to the dr. once again. A prescription steroid cream and oral predisone seemed to offer some welcomed relief! The itching has subsided and my freakish leprosy-like, weeping patches are drying up. Prior to the second dr. visit, Cora and Avery kept asking to look at my arm, asking if it was any better. One day, Cora was very disturbed by it and shouted: "oh gross, I just can't even look at it any more!" Thanks Miss Belle, you made mommy feel so much better. LOL

Jason has had the luxury of missing all my drama as he has been in Orlando for meetings this entire week. I think my single mom-hood should be over this weekend if his flights work out. Apparently, one flight was cancelled and the next was delayed......he should be arriving tonight.

As to not end on a bad note with this post, I leave you with a video of my Brock-E-Bear. For a non-verbal kiddo, he certainly isn't non-VOCAL! Brock loves to play the mocking game. When he makes a noise, I imitate it and he thinks it is so funny! Unfortunately, I've never gotten our game on video. Please overlook my crazy voice and see what a fun-loving boy I have.

His laughter and smiles make my day. :)