Joy and Anguish

The past week and a half have been an eventful and emotional roller coaster for our family. Seth experienced one glorious seizure free day right after we came home from the hospital, but this joyous occasion did not last. Instead, Seth has had one cluster a day (a cluster being full of multiple seizures in a small amount of time) ever since. Even more unfortunate is that each seizure has been worse than the last. Each seizure that has occurred within the past week and a half has sent me spiraling into tears.

The Saturday after we returned home, he experienced a cluster that lasted fifteen minutes. None of his clusters had ever lasted that long, so I called in to the neurology department to find out what to do next. On Monday, we were given a prescription for a rescue medicine that would stop a long lasting seizure. I took the medicine home feeling apprehensive and relieved at the same time. It was great to know that we now had a way to stop a long seizure, but I prayed I would never have to use it.

Seth experienced one of his most rapid clusters on Friday with seventy one seizures occurring in a seven minute time span. That particular episode was especially difficult to watch.  I had been instructed to call in every episode as they completed so it could be added to his chart. On Saturday, I finally asked the on call neurologist what the plan was to stop his seizures.

I was told that he would more than likely be given a second medicine on top of the ACTH. When I asked what medicine, the probable answer was to start Seth on Vigabatrin (the oral medicine). Vigabatrin is an antiepileptic drug. Since there is always a down side to any medication, we will have to be on our guard with this medicine as it can cause peripheral vision loss. Even with this serious side effect, I felt a huge sense of relief when I heard this was the next step in his recovery. Something just felt right about this choice, and for the first time in months, I felt at peace with Seth's IS.

On the flip side, Josh and I seem to have noticed an odd, unexplained link between Seth's seizures and his developmental milestones. With Seth experiencing the seizures, his brain should be slowing or regressing his development. In Seth's case,  however, he has not only been progressing each time a spasm occurs, but progressing rapidly. When he began having the clusters again that sent us back to the hospital, he attempted to crawl for the first time. He is now so close to truly crawling that I'm guessing he will be setting out to explore our house in roughly a week. He has also learned how to hold a sippy cup and can sit up from his belly all on his own. Tonight Josh was able to get Seth to stand on his own for about two or three seconds. While we are grateful that the spasms have not succeeded in slowing his development, we are both quite confused as to how this is possible.

Today I spoke to the neurologist about the next
step in Seth's treatment. We were given three options to choose from: Sabril/Vigabatrin, Topamax, and Onsi. Topamax can cause language delays and weight loss, so we quickly marked that off the list as he really can't afford to lose any weight. The Onsi could cause extreme emotional highs and lows. The Vigabatrin not only came highly recommended by the neurologist, but also just felt right to us. I can't explain the feeling - we just felt at peace with our choice.

He will begin treatment with the Vigabatrin hopefully on Wednesday. We are praying that our gut feeling is correct and that medicine will finally heal our baby. We are anxious to put this behind us as quickly as possible. Pray for good
results. If we see no improvement ten days after beginning this treatment, we will have to try yet another medicine.

Super Seth

We got released from the hospital yesterday afternoon. Since no one really ever gets a restful sleep in a hospital room, all three of us came home and crashed.

When Seth's neurologist made her rounds yesterday morning, we received news on his latest EEG and were told what his new round of treatment would become. She said that his EEG looks surprisingly better than it did at his follow up four weeks ago. I don't fully understand how this is possible since he wasn't experiencing any seizures at the follow up appointment, but I'm not a neurologist. So while it was confusing to hear this update, it was also very reassuring.

Since his hypsarrhythmia appears to be lessening, she said she had decided that the best course of treatment in Seth's case would be to raise the levels of ACTH dosages and taper off slower than we had before. She said that everything suggests that the ACTH was working before he began having the clusters again and is hesitant to jump to another drug without giving his body a second chance with the current medicine.

I am hopeful that another round of the steroid will stop the spasms once and for all, but a tiny part of me fears that it won't be enough. If the spasms recur, we will have to return to the hospital for another twenty four hour observation before switching up medicines. I would like to avoid another day long hospital stay if at all possible, so hopefully this will be it.

Seth did have another very large cluster this afternoon. Forty two spasms occurred in a fifteen minute period. This was his largest cluster since we began the first round of ACTH back in June. To make things even worse, he cried for the first time during the episode. Josh and I have decided to grit our teeth and bear with the spasms until Tuesday. If things do not improve, we will be calling to find out what to do next.

A major positive in all of this (minus the decrease in his hypsarrhythmia) is that Seth managed to pull his way all the way across a blanket on the floor on Thursday. When I shared this with the neurologist, she was very pleased. She said to take it as a good sign that he is not only staying on target with his milestones, but is actually ahead! Josh and I are celebrating every milestone he hits and are so excited to see what he will be able to accomplish next. He may not have his own cape, but he is definitely a real superhero in our eyes!

Hopefully I will not be updating this blog for quite some time. I would like to not write that we had to return to the hospital. Keep praying that no new issues will arise for the next six weeks.

Update 7/22:


Yesterday was a good day for Seth. He had a completely seizure free day AND almoooooost crawled. He is using a combination of ways to get to his desired toy (the pacifier). It's fun watching him rock back and forth on all fours, army crawl, pull his way across a blanket, and roll log style in his effort to learn. He's getting fast, too! So proud of our little superhero!

Carried

The last few days have been emotional for myself and my family. After Seth's episode on Monday, he had another on Wednesday. I had been directed to call the neurologist if it occurred again so we could be admitted for a 24 hour video observation. I made the call yesterday morning, and we checked in shortly after 1 pm.

There was one small condition - before further treatment could be decided, the neurology department had to catch Seth having an episode on camera. I was wary of this happening in the short amount of time we had been given since he had only had two episodes in the last week.

I will never forget the feeling I experienced at 4:42 am today. Seth had woken up and began to cycle through the seizures. My husband alerted the nurses, and his spasms were caught on camera. I have never felt such an odd mixture of emotions.

I felt a deep sense of relief that Seth had been able to have another seizure on camera. At the same time, however, I could feel my heart just hurting. I didn't really want him to have any more seizures. I couldn't stand this idea that I had to sit back and watch him seize through those cold hospital bars on his crib. All I wanted to do was pick him up and hold him close. After all, isn't it a mommy's job to help their child feel better? Making the situation even more heartbreaking was watching as he turned large, clearly terrified eyes on me and kept reaching his tiny arms toward me in desperation. How do you watch that as a mother and not feel immense guilt?

I am praying with every fiber of my being that now we can finally get a treatment that will stop these nasty episodes from ever returning. I am hopeful that Seth's wonderful neurologist will find a way to cure him. Josh and I are finding small bits of comfort in leaning heavily on family and friends as we sort through all of this.

I can't help but think of one of my favorite poems during this time as it's already given Josh and myself more strength to face this demon than I ever thought possible. I know He's there through it all!

Thank you all for your support, encouragement, and prayers. Even the smallest "I'm here" has meant the world to us. We are so grateful that Seth has so many people pulling for him to get past this!

Twenty nine

I had fully intended on writing a celebratory post today as Seth would be seizure free for one month today. Unfortunately, this celebration did not go as planned.

Seth had just woken up from a nap today when it happened. Seven involuntary head bobs in one minute. Seven times that my recurring nightmare crossed over from dream land to real life. Seven little knives tearing my heart into pieces in rapid succession. And then it stopped as quickly as it began.

Thousands of thoughts raced through my head during that one minute. Why isn't the ACTH working? Where do we go from here? Why can't he just get past this? Did I do something wrong? Is he ever going to fully recover from this? And the most selfish question of all - why my baby?


There is a flip side to this disappointment. My silver lining that I have to cling to is knowing that while Seth may have regressed a bit today, he DID make it a whole twenty nine days without having any clusters. Twenty nine glorious,  wonderful seizure free days have occurred. That means it can happen again. I know there is hope, and I have to cling to the reality of twenty nine consecutive seizure free days.

Now I just have to dry my tears, hold my son close, and celebrate...because twenty nine is a great number to celebrate!

Update 7/16:

Seth had another episode this afternoon. The movements were extremely small but more occurred today than on Monday. This time, he had twelve spasms in a couple of minutes. I was able to hold myself together for a longer period of time before my emotions got the better of me today.

We will be calling the neurologist in the morning to see when they can get it cleared with insurance to have him be readmitted to the hospital for observation. Josh and I are trying to keep our spirits high, but it's getting harder to stay positive as the spasms become more frequent. We simply want our little boy to be free of any neurological complications. I feel selfish saying this when I know that things could be far worse, but it's what we want. It's all we've wanted since this all began. Is that so much to ask?