Wednesday, August 15, 2007


Dear Son continued to sleep through the night on the new dose of medicine however he also began sleeping through the day as well. As a result of the increased meds, his EEG did not show any seizures, although it did show abnormal activity. Since that time, they have reviewed his seizure meds and decided to remove the Phenobarbital. The Phenobarbital, causes the other medicines to metabolize faster. Once they remove this, the drug levels of the other medicines should increase and therefore they will be able to reduce his overall number and quantity of medications since it will take less medicine to attain a therapeutic level. It will take approximately a month or so before that drug is out of his system and around three months overall to adjust the other medications. In the interim, removal of this medication may cause some breakthrough seizures during this time. As a result, they will be keeping him there a few more days as we begin this process.

One of the questions that I had was that Dear Son is a hyperutilizer of his medications and I was curious as to how much of the hyperutilization as due to Dear Son vs. the Phenobarbital. They aren't sure so we'll have to wait and see. (Because Dear Son hyperutilizes his seizure medications, it's important to get "trough" levels.)

We made the first changes yesterday and he seemed to have a pretty good seizure this morning. I suspect as we decrease these medications he will become more alert.

As a follow up to a previous post regarding the school bus accident and aide for summer school, I met with the Special Education Cooperative and the School District Representative yesterday and the IEP has been formally changed to allow for an aide for him on the school bus. In addition, they will also request an air conditioned bus for both the normal school year and summer school. They had no problem with either request.

I probably won't post again until possibly this weekend unless we leave the hospital sooner.


Kathryn said...

Hi Dream Mom - you have been having quite the summer with your back issues and everything else. I am just catching up on it all now. But my thoughts and prayers are with you and Dear Son. Who is beautiful by the way. Look at those baby blues.

Your post on how you finally realized he was anticipating your tickling his feet during the story was so familiar and heart warming. Ellie is really responsive now but wasn't always. And I know what that is like when you finally get some sign, some physical sign.

You inspire me, as usual with your patience and persistence and creativity. I really liked the med tray as well and I am always amazed by how neat everything is in the pictures of your house on top of all you do all the time you even make the beds - perfectly it looks like too. I can't keep up!

The seizure meds are tricky. We are struggling with Ellie's. I am glad the school came through with the aid and the air conditioning. And I hope you and Dear Son come home soon and that the meds start working for him without making him sleep all the time. I really hate seizure meds. I know they are necessary - but they are really hard to control because of the body's tolerance to them and their heavy side effects.

Hugs from Boston!

Dream Mom said...

Thanks, Kathryn for your thoughts and prayers.

I am glad to hear Ellie is responsive. It's hard to get them to respond initially, but once you do, I think it's the key to getting them to connect with the outside world. It took DS a long time though (around age 10), before he really connected with the outside world, 100% of the time. I think the two keys to that are: 1) the seizures have to be under control and 2) the outside world has to be more appealing to them than their own world. Daycare made a huge difference for him, moreso than school for that-he really loved all of the chaos the little kids got into and laughed like crazy. Plus the kids really interacted with him. Most of the kids were little (2-6) and he was older, but they did stuff with him-played and fed him and he loved it.

I love the med tray too. It's just so functional to be able to prepare my flushes and to prepare the next set of meds, especially when for the midnight dose. As for the neatness, I've always been like that-I find when things are neat and put away, it's calming-too much stuff stresses me out. I am also a Professional Organizer. LOL!

Yes, seizure meds can be tricky. DS has been pretty stable for a while, ever since the VNS really, but we do need to adjust them from time to time. I've always been o.k. with seizure meds, mainly because he's always really needed them, meaning he can't live with the seizures and it's the only way to effectively stop them for DS; it may be different for other kids but with DS having no GABA, I've been pretty comfortable. DS neurologist does a good job with his meds so there's no second guessing on my part. Not so with other docs. The VNS made an AMAZING difference though-not so much in eliminating the meds, but controlling the seizures.

It's great to hear from you again. We'll have to start e-mailing again soon.

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