clusters vs singles

Looks like the ketogenic diet may be in our near future...

I'm not sure if I'm ready to go there. I've finally gotten Austin to start trying yummy new foods. The thought of yanking them away...breaks my heart.

When I got the call from the epi nurse on Friday, she said the doctor wants to discuss the diet at our next appointment on the 15th.

His blood levels for both the zonisamide and the valproic acid were both in the upper range of normal. So, we can't increase them at the moment. He said it's time to discuss other options..notably the keto diet.

I need to do more research. I really don't know enough about it to accept or refuse the possibility yet. All I know is that I couldn't bear to see Austin fast for 2 days...and I can't imagine life with such a restricted diet. On the other hand...I like the idea of life without seizures more.

It's been a rough couple of days...seizure-wise. Clusters are starting to be the norm again. We went several months where clusters were rarely seen (during vigabatrin trial). As soon as we took him off, they started creeping back up again...But, the face-first full body falls practically ended too. Should we have tweaked that, I wonder? Maybe have added a drug to control the major drops? Kind of hard to know when our doctor never even asked how he was doing on it. At the time, I thought, it's not working...it's worse...let's get him off. But now I wonder if separating the two different presentations might have been helpful. That's why I'm still holding on to our leftovers...just in case. But, I never want to see those heart-wrenching falls again. He still falls forward, but in a totally different way. Plus, he transformed into a new baby immediately after the wean. He started laughing and smiling on a regular basis...there was new progress in his development.

I honestly don't know what's worse...the clusters or the drops. The clusters are light and chance of injury is lower. But, I practically lose him for the duration. He just zones out and makes no eye contact. I have to watch his every stinkin' move with the drops. Don't stand over this, don't walk over there, don't walk with that...I constantly worry about serious injuries. He has no freedom to wonder and explore. Our perfect treatment would fix it all.

Needless to say, we have lots to cover at our upcoming appointment next week. Sadly, it will be with Dr. Doom and Gloom...but I didn't want to pass up such a quick appointment. I recently got all the reports in from Detroit, and I'm eager to get them explained again (since the shock has worn off a bit). If we get any of the attitude we got back in October, that will be the last visit we have with him.

If any of you seasoned IS parents have any info for me on the diet or other possible meds, it would be much appreciated!!