Thursday, November 18, 2010

Goodbye zonegran, hello lamictal and dilantin

October and November have been very rocky months in our household with regard to seizures. Beginning October 1st, we had not had more than 4 or 5 days in a row seizure-free. We had a 4-day hospital stay a few weeks ago and another last weekend. In between, there was an ambulance ride and visit to the local hospital because she had a cluster at daycare. Peppered throughout that was a lot of at-home seizure control and administration of Diastat to break clusters. Greg and I have been alternating and working from home whenever possible to watch her. We are on our 6th medication now. Trileptal, Keppra, Clonopin, Zonegran, and now Dilantin and Lamictal. It's difficult to remain hopeful that we will find a way to control these seizures when despite our best efforts, they have become more frequent. We are currently building up a new drug in her system called Lamictal. It's crutial that Lamictal be built up very slowly in the body, over 2 months or so. We were told that Lamictal is a really good drug. There are few side effects, but there is one and its a bad one - a rash to look out for that is very rare, but can be fatal. So we are visually scouring Meredith day and night for any signs of rash, since we're told that if you are going to get it, it's likely that it will present within the first few weeks. So far, so good - no rash : ) We will use Dilantin as a bridge drug until we get the Lamictal up to speed. Dilantin seems to work better than anything else we've tried. She had a seizure on Monday of this week, but no cluster. Just one random, short seizure - this is very rare for Meredith. Usually, if she has one, we can be sure she'll have many more. Dilantin is an an older drug with undesirable side effects if used long term (think; hair), so the doctors do not recommend using it for any length of time. But so far, she's had fewest seizures while on this drug, so we are very happy for that. And since she should only be on it for a few months, the yucky side effects shouldn't come into play.
Monday we have an appointment at Children's Hospital to discuss the Ketogenic diet. They have a Keto Clinic there where we will meet with a nutritionist to discuss this diet as a future possibility. If you are interested in reading a neat article on this diet or have never heard of it, click here. It has helped many children who's seizures fall into the "difficult to manage" category and is really interesting. Science does not know why exactly it works. I am a big believer in the link between nutrition and health and we feel that if we are still nowhere in a few months trying to control these seizures with meds, we will most likely give this a shot.

In the meantime, we are busy interviewing people with special needs experience to watch Meredith in our home a couple days a week, and will most likely be pulling her out of daycare. We feel her condition has become too difficult to manage in a setting like daycare where they have to call 911 if she has one seizure. Every second of the day I'm fearing the call saying she had one and they called the EMT's. Once they call the EMT's, its an ambulance ride, an ER visit, blood draws, cathater, and too much poking at our girl. At home, we would just make a note of the time and duration and watch for more. So while it breaks our hearts to take her out of there, we feel it's time. She needs a bit more individualized care until these seizures are in a better place. This way, she'll be home and comfortable and we won't have to scream out of work at the drop of a hat if she has one. Also, we think she may get sick less frequently being at home which is important since illness triggers seizures for her. Surprisingly, we have gotten many responses to an ad I posted looking for people with experience in special needs AND seizure disorders. So this week and next, Greg and I will meet with as many people as possible to try to find the right fit. Once Meredith turns 3 in June, she'll be in the school system and that will simplify things a bit for us - we think/hope anyways!!! Despite our rocky road the last few months, this past week has been relatively quiet. And as long as I make it another hour and a half without a call from daycare, we will have successfully completed a whole week at daycare with no emergencies - yahoo!!!! Maybe this Dilantin is working....