Sleep Issues and Seizures

As you've heard me mention before, Jake's been having sleeping issues for quite a while now and over the past two months it hasn't really improved. Our evening strolls helped for a bit, but then things kind of reverted back. Jake has a very difficult time settling down at night and despite our best efforts to snuggle, sing, rock and pat his tooshie to sleep...it still takes about two hours of restless whining for him to drift off to sleep. He has also been waking up several times each night, so Josh and I have been taking turns "on duty" to put him back to sleep. It came to the point where we realized that Jake probably needed something to help him sleep. We made it almost two full years without the regular use of any medication and were reluctant to start him on anything that would alter our little man's personality or make him super groggy, but we know it is better than him not getting the sleep he needs. That said, we started Jake on a very low dose of Clonodine (a blood pressure medication) about two weeks ago and so far it has helped with the restlessness, while allowing him to sleep better through the night.

Not even his favorite bedtime friend Ele could convince him to go to sleep

What most of you haven't heard about is Jacob's seizures. We've been hesitant to share this information until we got final confirmation about Jacob's "episodes", but last week I had a long late-night conversation with his neurologist that confirmed Jacob has indeed been having seizures. Shortly after Jacob had his bout with RSV (early February), he began having these very startled responses where his eyes would get very wide, he'd clench his teeth, and his arms would extend out at his sides. It was as if we had frightened the heck out of him and believe me, it frighted the heck out of us!! At first, we thought we had accidentally scared him. We soon became disheartened to know that some of Jake's favorite activities, like waving a blanket over him to play peek-a-boo, were actually triggering the startled responses, so we were VERY careful not to do anything that might startle him. We also started telling Jake when we were going to pick him up, so that he wouldn't be caught off guard since we had also witnessed the same response when suddenly lifting him out of the tub or from his changing table.

It wasn't until my Mom (a nurse) was over one evening, while Jake was eating dinner and he had a very bad startle reaction, that we realized his responses were probably seizures. I immediately called his doctor and she indicated that they might be myocolonic seizures, but since they weren't occurring too frequently, she suggested monitoring the seizure-like episodes for a while. We began keeping a record of these seizure-like responses and discussed things with Jake's doctor in August. At the time, she thought maybe Jake was just having exaggerated startle responses. Josh and I were okay with that explanation since his activity hadn't been too bad and they only seemed to bother him for a moment. Unfortunately, two days later I witnessed two very different types of episodes:

After his nap he was a little whiny, so I put him on a blanket to play and he began crying. I then noticed irregular eye movements -  his eyes were gazing in different directions off to the side, but his eyes were open. I got close down to him to hold him, but he kept crying and his eyes continued the weird gazing for several more seconds. This occurrence seemed to bother him a lot! 

After Jake's bath one evening, I was drying him off and he all of the sudden got a huge smile on his face and began giggling and laughing out loud. He had not giggled in 6+months! At first I was very excited to see his reaction, but then I noticed his eyes were gazing in different directions, almost as if he wasn't really present in the moment. I cried that night knowing that things were changing and worsening way too quickly!

At this point, I was convinced he was having seizures! I may not have a medical degree, but I know my son better than anybody. I phoned his neurologist the following day and also contacted Dr. Wasserstein at Mt. Sinai in New York to seek her advice. As follow-up, we were going to schedule Jake for an EEG, but after speaking with his neurologist determined that it would be very hard to pinpoint the seizure activity since they did not occur on a regular basis. Based on what I had described, Jake's neurologist was now convinced that he is in fact, having seizures. Unfortunately, over the past few weeks we have noticed that his seizures have picked up in frequency (now daily) and we feel they are affecting his overall quality of life, since he becomes pretty agitated and upset for a while after having a seizure. We have also witnessed Jake having seizures at night, which cause him to wake up from his sleep. We put two-and-two together and realized that these seizures could also be the exact reason why he is having so much difficulty sleeping.

As of Monday, Jacob is now taking anti-seizure medicine (a generic form of Keppra) twice a day via his G-tube. It is a very commonly prescribed medication to those with certain types of seizures and has very few side-effects. In fact, I just spoke with another NPD momma the other day and she spoke very highly of the benefits that this medication had on her son Wylder. We are very hopeful that this medicine will help Jacob avoid having frequent seizures and we want to do everything we can to keep him comfortable and pain free. It is so very difficult to know how the seizures truly affect him, but we know prevention is key in this case. Right now we're in an adjustment phase as his body gets used to the new meds and he's been waking up several times each night. Please keep your fingers crossed that this medication helps!

Jake's new meds and a new part of his (our) daily routine