Delicate balance

I wish I could say things were going better and that Zack was getting back to himself and his normal baseline, but we are not quite there yet.  The good news is that the reflux and vomiting seem to be under control now, but now we are fighting the seizures again.

The weekend we came home from the hospital, Zack threw up again, so we decided that he was not ready for larger bottles yet.  We had to go back to eating 5 oz bottles around the clock, every 3-4 hours.  This is always very difficult with Zack, as when he wants to sleep, there is no waking him. This leads to him not getting enough to eat, which can lead to part of the problem that landed us in the hospital in the first place.  The last few days, he has been wanting more sometimes, so we have been working our way up slowly. We are still having a very hard time getting him close to meeting his daily formula requirements though.

This could be causing some his seizure "increase", but I think that trying to wean the Topomax and lowering the Keto ratio was just too much for him at once.  His seizures have not really increased in number, only in strength and duration.  He is still having about 3-5 a day or so, but they went from being hardly noticeable to stronger than we have ever seen him have.  (Thankfully, we are blessed that he has never had convulsions or anything else as frightening as that.)  His "subtle" seizures usually consist of eye deviation and maybe a shoulder shrug or two, showing the faint remains of the spasms.  His "strong" seizures are now typically rhythmic twitching of his cheeks, eyes, and usually his arms or legs jump on board in some fashion as well. They still occur off and on in clusters and are usually more one sided, though they have gone from being right-sided to being more dominant on the left side.  Last week almost every seizure he had was strong, and by the end of the week he had a cluster in the middle of the night that lasted over 30 minutes, and was stronger than I think I have ever seen.   Waiting for a seizure to run its course is never something you get comfortable with or used to, and even though we have not had to struggle with this lately, it still as frightening as I remembered it :-/.

The next morning it was decided that rather than be given as needed, the Klonopin would be given twice a day over the weekend, to see how Zack responds.  This is a medicine that we have already been on in the past, and while it helps seizures be more subtle, it is extremely sedating.  That was the reason that we changed from Klonopin to Clobazam last summer.  I can happily admit that the seizures are back to being more subtle again!! The problem is that he has slept all weekend long practically.  After talking with neuro, he wants us to stay with things the way they are and hopes that the sedative effect wears off within a week or so, but in the meantime its a rough ride. 

A sleeping baby does not eat well, and one that already has no weight to spare cannot afford to miss meals.  We are also dealing with a little guy who doesn't always have enough energy or the urge to clear his own secretions, causing him to be very raspy and have a hard time coughing to clear his throat.  There is also the possibility that he could be getting a cold according to the pediatrician, but it seems like a cold, teething, "sub clinical infections," etc are always a possible variable for him, so we will never really know.  The good news is that the pediatrician agrees that the Klonopin at this dose seems to have this negative effect on him (we have been through most of this before), and she was going to talk with neurology herself after our appointment today about any other possible options.

 We are all too familiar with how difficult it can be to find that delicate balance between seizure control and Zack's overall health and happiness everywhere else. Hopefully we will be able to figure out something that will be better for Zackary.   In the meantime, we are praying for some relief and a return to our sense of normal.