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