Wednesday, April 8, 2009

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'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!!


kirstenpetree said...

Hello, my son Layne is on the diet. He started it last June and he didn't have to fast at all. From what I understand they don't have to much anymore. The diet helped him tremendously. He is currently seizure free for 2 months now! He is also on phenobarb and Keppra.

kirstenpetree said...

yes I think its definately worth a shot! I don't think enough people give it the good reviews but it really can help! My son didn't even smile until we started it!

JSmith5780 said...

A few thoughts, if you are scared about keto, what about the modified atkins? Sometimes it works.

Another thought, Vigabatrin and Topamax are usually a good combo. Maybe a lower dose of Vig with some Top? If you choose this route, be sure to get him off at leats one of the others!

Third thought, email Dr R and tell him Dr Chugani wanted you to seek him out. Just remember, this link did NOT come from me!


Jamie said...

ohhh lil oh was mentioned for madie but with her poor eating...ehh opted out of it.

You and me both at the neuro on the 15th! weird!!
hang in there :)

Sophie's Story by Elaine said...

Sophie was on the diet from the age of 18 months to 2 years. At first it is way overwhelming...pull your hair out and cry at every meal kind of feeling. But then you get in the groove. You find shortcuts. You just have to be organized. I'm here for you if you decide to start the diet.

Anonymous said...

Just came across your blog...Very interesting to me...Austin is adorable!!! My 24-year-old recently began Banzel for the drops...He hasn't actually fallen in some days...Just dropping his head...Still increasing dose...Know what you mean about the safety issues! You can check out our blog...I just started writing...I'll continue to follow your's...Good luck!! I am right there with you!