EEG time again

We went to St. Louis for Zack's EEG this week.

Zack cooperated too well as usual and had way too many of his newer seizures (or at least ones we haven't really seen in quite a while, but with some new aspects to them). The last week or two has been pretty rough on him (maybe the weather, maybe his teething, who knows) and his episodes have been getting progressively stronger and more frequent, requiring Klonopin everyday, and sometimes even twice, to settle him down. Our time spent in the hospital was no different, actually even worse. We always say if there is ever a good time to have a "bad day" its while hooked up to the EEG so they can get a really good idea of what's going on, but I think he took that a little too seriously. It's frustrating when he has such rough times in the hospital because the docs think that that is his regular (or semi-regular) activity, and this time in the hospital was FAR from what he has been like the last few months. Plus, its just never easy to stand by and watch the bad days, or really bad days in this case, knowing there's not much to do be done about it at the time.



Resting up after a rough afternoon, looking as sweet as can be

Despite the rough time and all the wires attached to his head, he was in a decent mood! He was a little cranky here and there and didn't want to eat much by mouth, but in addition to all of the seizures, it feels like he has a second molar trying to come through. So poor guy had to be feeling pretty miserable all around. He was pretty sleepy and lethargic most of the time, but still got chatty and was rolling back and forth during the short periods when the seizures backed off for a bit. That was the first time we have ever had to worry about him moving around so much while in the metal hospital crib, or with a backpack of wires we have to watch out for, so that part was interesting and seeing him act somewhat normal at times helped get us through the rough couple days.
After a day and a half or so of monitoring, the docs came in to chat with us about what they were seeing. As we already knew, Zack was having a lot of seizures. Some were strong and clearly seizures, and some were more subtle and were questionable without the EEG, but they were all seizures nonetheless. His background is still very abnormal, but does get better while he's sleeping (or with the help of Klonopin, which was hard to say with how the timing of the two things worked out). That is all of the details from the EEG we have until we talk to our regular neurologist soon, and given the circumstances, that was enough for the moment.

They did some lab work and his ketosis levels were lower than what they should have been, which could be part of the seizure increase also. So we are going to go from a 2.5:1 (his levels werent even representing a 2:1 ratio, so they were pretty off) to a 3:1, and see how he does. We can go up more if we need to also. They also wanted to wean his Topomax (this and the diet can together can be very hard on the body, and with Zack's history of metabolic acidosis and kidney stones they are worried about raising the ratio). The Topomax decrease scares me, no it actually terrifies me. We have tried to do this 2-3 times before, and wound up in the ER for horrible seizures each time. Given our past difficulties with Mercy, and their lack of wanting to follow other hospitals suggestions, this was a very scary option. After some emotional breaking on my part, the docs agreed to let him stay where he was on the Topomax, try the increased ratio for a week, and draw new labs to make sure he's tolerating the changes ok. I imagine that any borderline levels will result in us having to wean Topomax despite the possible risks, but will be hoping and praying this doesn't happen now that he has his G Tube and we can make sure he's getting all of the food and fluids he needs.

On a happy note though, when he has chatting and moving all around, there were no signs of seizures, even subclinically (that was one of my biggest fears)!! And he also he had an ultrasound of his kidney to check how the kidney stone was doing, and good news is it has gone away!! This is a blessing for two reasons: 1) he had a horrible reaction to Diuril which is the main treatment for the kidney stone other than laser surgery and he wound up in the monitoring unit for seizures and not eating, 2) kidney stones are a side effect of the diet and the Topomax, so the fact that its gone (thank you G tube!!) may help my case and allow Zack to be able to stay on both for now. We were also supposed to have an EKG done on his heart while we there, but somehow that was forgotten on both our part and the teams, so we will have this done locally in the near future to make sure everything still looks good on that end.



Ready to go home!

After all of this, they let us go home a night early because they had seen plenty of Zack's seizures and gotten enough information otherwise. While it wasn't quite the trip I had been hoping for, and they were not able to see quite how well he had been doing for so long, it was still a worthwhile and gave us some good information. We are praying that the diet increase does the trick and his seizures settle back down very soon, but it is also reassuring to know we have more wiggle room with it before having to add more meds (which can be very sedating and interfere with his therapies and overall development). Hopefully very soon things will be back to normal for him and he can continue to show us everything that he is capable of!!