Oh my oh my. What a mess we are in. Sigh. I don’t know what happened, but Lily was no longer doing awesome on the combo I put her on. She started having tonic seizures where she just shakes and then screams and cries for a half hour later. Not a good thing. At least with the other GM she was having she would have it for a few seconds, then smile, then sleep. None of these are good and if I go on a tirade about my frustrations with this study I will waste energy so I am just going to stick to the facts.
I told study RN I put her on Vigabitrin. She said they need to see her ASAP. Lily’s neuro is out of town so we saw his partner on Monday. He is a real nice guy, I remember he was on call when Lily had her video EEG last summer and he remembered us. He said we need to take her off the V for the study sake. I said only because she is doing worse I will do that. This past weekend Lily was throwing these fits of rage and screaming for reasons we had no clue about. She was miserable and I saw that V was not the answer like I (dr. mom) thought. So I told the Dr. I am willing to try something different. He thought Keppra would be the safest bet. We tried this years ago, I am certain it will not help, but who knows. It has been well over three years since trying different meds, she might react different this time. Only negative side effect of Keppra is it can cause behavior issues. I asked for an example and he said “Well a totally normal kid tried to kill his family with a knife”. “Ok then” I said “What is an example of a kid like Lily having a behavioral issue?” and he said “Crying, you’ll know”. Phew…. although if Lily gets up out of her chair and walks over to me, even if it is to kill me, I will be a happy person.
So we had to wean the V which was easy she was only on it a week. We added the Keppra today and she is still on Topamax and the study drug. I am not a fan of three drugs and if the Keppra shows any improvement I am ready to show Topamax the door. She has been on that one FOREVER and it has never done much for her so it is time to hit the road. Of course we can’t make too many changes at once, so that is in the future.
So as of right now we are having a rough patch. Lily is upset. Seizures are a mess and I am as confused as ever. I wish I never told the Dr. she had drop seizures, none of this would have ever happened. The drops are easy to deal with. Much easier than all this bull. Sigh.
Good news is we are getting out of dodge. Ugh! It is so hot and nasty here. We are going up to my parents place in Greer, AZ. We aren’t staying at the house in the link, that is my dads rental property. We are staying with my parents in their house. The rental has a steep stair case that we can’t do with Lily. But that is to show what a getaway it is. We love Greer! Oh and the little girl in pink is Andi roasting a marshmallow!
We wish you all a very happy and safe 4th. Send us some good vibes and prayers Lily only gets better from here.
Oh and one more thing…. Lily and Andi are going to be big sisters! We are having one more baby! Our due date is Feb. 8th, 2009! Can you believe it! Wow!
4 thoughts on “Where do I begin?”
I’m sorry that Lily is going through a rough time right now. Hopefully you and the doctor will find a combination that works well for her. Congratulations on the third baby! I would love to have a third but I am still scared of starting all over again. We shall see. 😀
That’s so rough. It’s so hard to know when to try something new and when to just live with things. We messed with Ethan’s meds for a study and then chickened out before it even started. Congratulations on baby #3! Definitely keeps things interesting around here – we’re outnumbered now!Best of luck, and a happy Fourth.
I’ve been reading about Lily for must be around 2 years now. My heart has gone out to you and Lily through this whole study. I’m sorry it’s been so difficult. I hope the new medicine does it.I laughed so hard about the Kepra behavioral side effects…not at what it can do but the example he he gave and what you said. Sometimes I just don’t get what neuros are thinking.Congratulations on the new baby. I’m very excited for you.Summer
Hi Kim,The first thing I saw when I logged on to your site today was the baby counter. HOW WONDERFUL for you.I’m so sorry that you are not having such a wonderful time with Lily right now, I really hope things improve for you.Take CareLots of Love Carolynn xxx 🙂