Be Careful What You Wish For

Well, Friends, here we are again in the world of the unexpected and bizarre.

As of last update, we were waiting for Nathan to come off of some meds and adjust to the new meds in order to get a feel for his new baseline. Would he be better or worse than where he was 3 weeks ago? Our prayers have been for Nathan to become less sedated even at a price of more seizures. The last two weeks have been a series of ups and downs with bizarre behavior for which we cannot explain. Is it caused by some new type of seizure, a medication side effect, or something else? I have sat up with him night after night wondering if he is going to come out of what may or may not be a seizure and have driven myself crazy with worry and guilt for initating this medication experiement.


While waiting for the neurologist to return from his vacation, we tweaked his meds a little, but after a day or two, he would settle right back into a pattern of uncontrollable movement patterns with his arms, legs, and head, paired with constant moaning/crying vocalizations, lip smacking, irritability, and insomnia.


Ok - we did wish for less sedation. But we didn't mean this...


So, last week, we went in for an emergency EEG to see what was going on with his brain this time. My fear was that whatever we did, had made things truly worse. Low and behold - his brain waves have improved quite a bit. Most likely due to this new medication. We think this is the result we were hoping for, but nothing can ever be easy or simple with Nathan.


Which leads us to why the behavior change? We think it is probably due to one of three things (or a combo) - 1) a side effect of the new medication, 2) improved brain activity that allows the real Nathan to shine through, or 3) a movement disorder that was hidden underneath the fog of the seizures/meds.


The neurologist was quite pleased with the improved EEG results and said that often times when he fixes or improves one brain issue in a child, it creates a new issue that was always underlying, but masked by the other. And now, our sweet little, quiet Nathan may be a high maintenance, insomniac, that cries all the time. We now have to get to know the new Nathan.



We are again tweaking the med dosages and moving the sedating ones to bedtime in hopes that he will once again sleep through the night. We are adding melatonin and a muscle relaxant to help with the irritability and possible movement disorder. However, we have found that the muscle relaxant relaxes the heart and lungs too much, so that may not be a viable option for Nathan.

I wrote the above paragraphs several days ago, but forgot to post. As usual, Nathan has continuned to be unpredictable. We are getting a bit more sleep, thinking that the melatonin regimen is helping. Nathan is awake much more of the daytime (good thing), but he is often irritable still and sometimes cries all day and night for no apparant reason (bad thing). He is having fewer big seizures (good thing), but many more little myoclonic seizures (bad thing). His teachers are impressed with the new and improved (read ALERT) kiddo, but they do not sit up with him at night with worry. He has increased tone which helps with strength for holding up his head and pushing himself backwards in his gait trainer (good thing), but his increased tone is also causing tighter muscles and worsening torticollis (bad thing). We will keep plugging along and the only thing I'm sure of is that by the time I write again, things will be different.

Thanks for all the prayers and well wishes, and for following this recent saga of Nathan's.

Luv, The McCues

Nathan's Seizures

Hi Folks. Just a quick update to let you all know that Nathan is home. He actually came home late Friday night after I decided not to stick around with the night shift. As of my last blog entry, Nathan was having a lot more myoclonic seizures on day 3 of our experiment. We had added back one medication, and I was relieved that he had fallen into a deep sleep for the night. Well, Friday morning, he woke up and went into status grand mal seizures. It was very scary for awhile. After giving him high doses of valium, he calmed down and slept for a little bit (about 45 minutes). The neurologist then added back another med and adjusted his Vegus Nerve Stimulator to what is called 'rapid cycling'. That means that he went from getting 20 seconds electrical stimulation to the brain every 3 minutes to getting 15 seconds of electrical stimulation every 20 seconds.


Then he woke up, and began having status clonic seizures. The doctor added more drugs to get his brain to calm down. This experiement was about eliminating drugs, not adding. Ugghh. I can only say that when you are watching your child seize, you want nothing more than to stop it anyway possible. So, pumped full of drugs and now electrical brain stimulation every 15 seconds, Nathan decided to take another nap. The rest of the human population would have slept for days after all of that. Nathan woke up after 2 hours and resumed what I consider to be "just a crappy seizure day". That means it is not our favorite type of day but one that we are used to and know how to handle.


The neuro was leaving town for the weekend and wrote discharge orders to go home when we felt he was stable, yet offered to let Nathan stay the weekend given his instability. The night shift was not the most proficient, and his nurse was rather intimidated by his situation. The carbohydrates and miserable cot were wearing on me, so we packed up and went home at 10pm figuring that we can always call 911 if he went back into status seizures. The neuro also left me with a regimen of medication options should we not be able to stop a seizure with our usual means.


The happy ending here is that we stayed home all weekend, did not add any more meds, and his seizures have settled into typical crappy day seizures. It will take a couple weeks to work all the meds in and out of his system to see what his new baseline is. Until then...

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.