Friday, January 23, 2009

Neurontin update...

Neurontin has been a roller coaster for us. Sophie slept through the night the first 4 nights in a row. Then she woke up once the following 3 nights. But when she did wake up, it was only for a few minutes. She would just sit straight up in bed, sit there for a minute, and then fall right back to sleep. Ever since then, she will sleep through the night every other night. The nights that she does wake up, she has been up longer. Though, it is still better than before we started Neurontin.

We are only on the lowest dose (3ml right before bedtime). But with every drug there are side effects. Sophie's seizures seem to be worse during the day. They are harder and last longer. So I am very weary about increasing the dosage. Uggg...nothing can ever be simple. Always trade offs. A lot to weigh on my mind. At least, she is not waking up in the middle of the night with her screaming seizures. I shouldn't say "at least". That is huge. So HUGE!!! That broke my heart more than anything. So, I guess I just rationalized it. The trade off is in our favor this time. Now I will just need to rationalize whether it might be worth it to increase Neurontin. For now, we will just give it some time. Maybe add another AED (anti-epileptic drug) during the day to see if it helps her daytime seizures. Maybe Lamictal. Who knows.


baby trevor's mommy said...

Ugh is right. I hate all the trade-offs too! But hate the no sleep more. When I was in DC a neuro recommended giving Trevy benadryl. He was waking at least five times a night. The bena was working well for about a week. Now we're back to square one. Which is why I really really would love a live in nanny! You could use one too!


Karen said...

We tried the Neurontin with Cameran last year and it payed off. Not only is it used for sleep but its also a seizure med. They told us in the beginning the would only need it for 3 months then take her off of it just to get her in a normal sleeping pattern. Worked like a charm. She went from 21-22 wakings per hour during the night to now just one where she just comes to climb in bed with us. Big difference. Our next step after the Neurontin if it didnt work was Ambien then Lunesta.

You know I awlays hated trying new things because you never knew what you where going to get in return. Weird that it increased her daily seizures. Maybe its not a good combo of meds. But remember too that hardly any sleep can result in more daily seizures, is what we where told. Every child is different though. Cami always had a hard time on all her meds.

I hope for Sophie the med will settle out and end up working for her. Everyone needs a good nights sleep ;)

Anonymous said...

The current design of your blog makes it appear that Zooey is Sophie. May I suggest a large picture of the girls on top, or moving the Zooey link.