Day 10

It's been ten days, now, since we started the new med. It's been very up and down. Over all, the daytime behaviours have settled. Our idea of "settled" is still stressful, but he cooperates more often :). Some days are better than others. We increased the dose on day 8.

On day 7, Mason had an "episode". He had been doing well all day and evening being the sweetest little boy. Suddenly, in a matter of a split second, his alter-ego appeared and he started screaming, freaking out, and thrashing the Christmas tree, stripping one side of it's ornaments. After a minute or two he calmed slightly and spent the next few minutes sobbing like crazy on the couch. It was heartbreaking to see him swing so wildly. I could not figure out a trigger, it was so random. I really don't know what to expect each day, or even each hour.

Mason has had a few good nights this week :) He even slept in until 9:30 today with waking only once at night for his usual seizures! Not that I slept in...I lay there waiting...

Mason had a blast this morning decorating a gingerbread house with his sisters. He even restrained himself from eating the candies until the decorating was finished!

Mason has been referred to a psychiatrist at Children's. We expect to see her soon in the new year.

Meds 101:
If you're not familiar with medications here's a little lesson!

- It usually takes 1 - 2 weeks for side effects to settle down.
- Some side effects go away
- Some side effects do not ever go away
- Some side effects linger, but are minimal

Honeymoon period: Medications are often effective for a period of time then become less effective - ranging from slight changes to not working at all. Sometimes they can even have the opposite effect that was intended. As a result, Mason has been on 12 - 15 different meds, up to 4 at one time. Thankfully Daryl has great prescription coverage at work! Most of the pills have been quite expensive.

Some medical conditions are resistant to any treatment. Lennox Gastaut Syndrome is such a condition. Most forms of Epilepsy respond positively to medication. There are a few types that do not and LGS is one of them.

Currently Mason is on one type of seizure medication. I don't think it is doing anything for him at all. In fact, as we went down on it, Mason had less seizures. This has happened with others as well. (all seizure meds have listed that they could actually increase seizures. If taken by someone without seizures, it could induce them)

With Epilepsy, everything is trial and error. We have always been told that we would try something and hopefully it would work. Even the most specialized specialists in neurology cannot predict what will happen in LGS.

Carrying on, one day at a time..... Shirley