Nathan's August Hospital Update

Hello Again Friends of Nathan! For those of you that follow along on Facebook, you may already know that I’m hanging out this week at the hospital with Nathan. This was a planned visit – not an emergency, but in many ways everything feels like an emergency with Nathan.

Nathan’s seizures have continued to be just as bad, and some days worse, than before the Vagus Nerve Stimulator was implanted in April. We have not seen any improvement from this device yet, however the neurologist continues to caution us that it can take up to a year to provide any benefit. We continue to hope and pray that he is right.

After many debates with the neurologist on medicating Nathan, we have decided to change the approach. Nathan has been on 4 major anti-convulsant medications for over a couple years and we still see between 25-100 seizures daily. On top of that, he has to deal with many of the undesirable side effects of these meds including sedation, excess saliva production (aspiration risk), gum overgrowth, impaired GI function, etc.. Our goal with Nathan has always been quality of life, and since he cannot tell us what he wishes in this regard, we base our judgment on our own desires. I truly believe that he does not wish to be highly sedated all the time even if sometimes I wish I could be sedated (LOL) and even if it makes his challenges easier to bear. My heart absolutely breaks each time I look at pictures of him when he was 2. Even though his respiratory health was much worse, he had a smile that could light up a room and his eyes were open & alert a lot. He moved his arms and legs to music and coo’ed when he was happy. Now, he is so mellow, sleeps alot, and rarely opens his eyes widely or smiles spontaneously. Even if he could be more awake & alert at the expense of incremental seizures, perhaps it is worth it to Nathan to get those simple joys back. We did not make this decision lightly, but did decide that we would try to quit the medications in pursuit of getting back Nathan’s personality.

So, that brings us to the hospital. It is impractical (per our experience) to slowly wean Nathan off of anti-convulsants at home. It takes too long, and we end up over-reacting to changes in seizure activity. We decided, with the neurologist, to put him in the hospital, hook him up to a video EEG monitor for a few days while taking him off of his meds in a cold turkey fashion. The downside of this method – well, there could be a lot of downsides – status seizures, shock, withdrawal, etc. But Nathan faces most of those risks on a daily basis anyway. Now, we don’t always see eye to eye, but as an experienced Epileptologist, we do allow our trusted doctor to call some of the shots some of the time. That means we have acquiesced to let Nathan switch to one new anti-convulsant through this process and pending the results of our experiment, are open to going back on some of the meds if necessary.

As I write this blog entry, it is late in the day on Day 3 of this experiment. Nathan has been taken off of his 4 original meds, started the 1 new med, and restarted 1 of the original 4. All was going quite well until today when we dropped my least desirable 2 meds. His seizures took a fast downward spiral. I’m not happy about that, but am glad to have the information that at least one of the two was possibly providing a significant benefit. Now figuring out which of the two, or perhaps the cocktail of the two is our next challenge.

The other discouraging tidbit is that this renowned epileptologist has never seen EEG results comparable to Nathan’s. Apparently when Nathan is seizing, his brain waves become more typical. When he is not seizing, his brain waves are very jumbled like you would expect to see when you are having a seizure. Now, how does one treat that? We still know that fewer seizures means higher quality of life, but even if we stopped the seizures, his brain activity would still be pretty messed up.

I don’t know what the next 24 hours has in store for Nathan, but we will keep chugging along to finish this experiment that we started with the best possible course.

I never imagined living in this medical world. Before Nathan, I only knew of the epilepsy you see in the movies. Before Nathan, I never knew that a person could have 100 seizures a day. I never knew that you could go into a seizure and not come out. I never knew that the smartest doctors in the world have no idea how to treat it, or that my child could have brain wave patterns that have never been seen before. I never knew the most absolute gut wrenching feeling that I got today when I overheard another family get a diagnosis of "infantile spasms" for their baby. I never knew how much research is truly needed in this field and am shocked at how many people I know today, 5 years later, that have been diagnosed with one or more forms of epilepsy.

To end on a lighter note, I’d like to share some hospital humor.

1) A healthy/fit looking man in his thirties takes the last remaining handicapped parking spot, which is also the only van accessible spot in a HOSPITAL parking lot. When I ask him if he is leaving, he says “No, just got here. Borrowed the placard from my Dad so that I could get a good parking spot” as if I'd be impressed with this illegal move. Then he asks me if I’d like him to move so that I can park my van and get my child out on his 5 foot wheelchair ramp. DUH.

2) I receive a Ketogenic diet hospital meal for Nathan. The ketogenic diet is a seizure control diet which consists of ZERO carbohydrates. On the tray is a lump of mashed potatoes, a huge pile of corn, and a side dish of ice cream. I do not think that is ZERO carbohydrates. Good thing that Nathan cannot eat orally. Perhaps the hospital dietician read it wrong and thought the diet was supposed to be ALL Carbohydrates. Either way, should they really be serving all those carbs to anyone?

3) A woman pushing her IV cart and coughing up a storm asks me to hold the elevator door for her so that she can go outside to smoke a cigarette.

4) And last, but not least, 3 medication errors in 2 days. Ok – so this one is not humorous. It is a public service announcement to not let your loved ones stay in a hospital unsupervised.

Well, that's it for now. Nathan has stopped seizing now for what I hope to be a good nights sleep. Good night to all.