Team Bex Promotes Epilepsy Awareness!!

Today our family all wore purple. March 26^th has been named the Global Day of Epilepsy Awareness. People across the world are asked to wear purple to show their support for spreading awareness about epilepsy.  A year ago, March 26^th, purple, and epilepsy were just another day, another color, and a disorder that happened to other people. 

However, last June, all of that changed for the three of us. I can still so vividly remember holding Bex the first time she had a spasm. It was first thing in the morning, it was quick, and I thought maybe she was really hungry and having bad hunger pains. A seizure would last longer, her eyes would roll back in her head, and she would lose consciousness, right? Two mornings later, Chris was working from home and I called him into the kitchen to watch her have a spasm in her high chair. It was honestly the first time I even mentioned the abnormal movements to him because I wasn't quite sure how to even describe what she was doing. After I had observed this pattern of movements several times, my gut was just telling me that something wasn’t right.  

Epilepsy has been on my mind a lot over the last month due to our neurology appointment at the beginning of the month followed by the sleep deprived EEG. We met with Bex’s neurologist again on Monday to talk about her most recent EEG and treatment going forward. It was a good meeting. Bex has had three EEGs post-initial diagnosis (two last summer and one earlier this month).  He qualified them all as “good EEGs”, especially when you compare her to other kids who have had IS. I feel so thankful every day that Bex is one of the lucky ones who responded so well to treatment.  

Based on her response to treatment and her EEGs, her neurologist has recommended that we start weaning her off Topamax, her anti-seizure medication.  This decision is kind of like opening up Pandora’s box of emotions. I have hated that Bex has had to take a medication like this at such a young age. There are many days that I have been frustrated that this medication might be suppressing her appetite making meal times a battle, interrupting her sleep, or just making her feel icky. Therefore, there is a part of me that is excited that she is doing well enough that taking her off this medication is a possibility. 

However, as much as I have hated Topamax, it has also become kind of like a security blanket for me.  We might have to deal with some frustrating side effects, but it’s been working. Bex has been progressing developmentally and remained seizure free.  As much as I hate the side effects, I hate the idea of seizures returning even more. Chris and I expressed our concern about seizures returning to the neurologist because IS kids are at an increased risk to develop other seizures as they get older. We would hate to see seizures return and cause her to lose all the progress that she has worked so hard to make. Of course, the neurologist can’t predict the future any better than we can. However, he did explain that it will be a very slow weaning process. By weaning her slowly, the hope is that if seizures do return they will be very mild at first, so we could readjust medication before they would impact her development.  

We started tapering her medication on Monday night and it will take three months for her to be completely off the medication if all goes according to plan.  It has been an exciting and nerve-wracking step to take. I have been watching her closely this week. As I watched her fall asleep last night, she twitched in her sleep and I felt my heart skip a beat each time.  If she starts to focus intently on something, I find myself making sure I can interrupt her focus to make sure it is not an absence seizure. Chris has been traveling this week and when he checks in, the conversation at some point usually involves him asking if I have noticed anything different with Bex. Thankfully, this week she has done well with the first decrease in dosage.

Next year on March 26^th, I hope that epilepsy is a distant memory for our family, not something that is part of our daily conversations. However, regardless of what the future holds for Bex, I do know that raising awareness about epilepsy will remain a cause that is near and dear to our hearts. 

In honor of Purple Day for Epilepsy Awareness, Chris and I encourage you to take a minute to read the information about West Syndrome that we have posted on our blog or educate yourself about epilepsy by visiting www.epilepsy.com. Epilepsy affects 1 in 26 people in the United States at some point in their lifetime, so it is a lot more common than I realized at this time last year. Hopefully, one day with advancements in research and treatment, that number will be much smaller! 

Team Bex = Team No Sleep

Bex had her sleep deprived EEG on Monday. While was I looking forward to getting this test out of the way, I was dreading finding out the instructions about what we would need to do in order to sleep deprive her. When the nurse told me that we were only allowed to let her sleep from 12am - 4am, I almost laughed out loud at the absurdity of only allowing a 16 month old to sleep for 4 hours (not to mention that midnight is wayyyyy past my bedtime these days, ha). Then I started envisioning dealing with hours of a very tired, very cranky, and very fussy Bex.

As with everything, Chris and I tried to come up with a game plan to keep Bex up while also trying to keep our sanity. We decided the best plan of attack was to keep her distracted by making her routine as different as possible. Our college friend was in town visiting, so we took Bex out to dinner with him at the time we would normally be putting her to bed. Then we went for a late night Target and grocery store run. We didn't get home until almost 10 and kept her occupied with a short walk outside, Face Time with the grandparents, playing with toys, and finally a late night bath. The 4am wake-up call was a little rough on all of us, but we kept her busy around the house, were the first customers in the door at Panera, and got to the hospital a little early to wander and let her people watch. Bex was such a little trooper and so well behaved despite being exhausted!! 

Thrifty shopper!

First customer at the door at Panera...6AM!

The EEG itself was a breeze. The nurse who does these EEGs is wonderful and may be my favorite person that we have encountered on this journey. She is so good with Bexley! She gave Bex a pinwheel to play with and let me lay down on the hospital bed with Bex while she hooked everything up. Bex was so exhausted by this point that she just played with her pinwheel and was asleep within 10 minutes of laying down. Chris and I were so proud of how well she did with the sleep deprivation and were thankful that the process was much smoother than we were anticipating.

So sweet even with an EEG cap...pulling it off!

Today we received the results from the EEG. Our one frustration is that a nurse called to give the results and pretty much read the report verbatim, which is primarily in medical jargon. When we asked for clarification or to put it in layman's terms, she struggled to do that. There were about three phone calls back and forth before we were able to get a clear understanding of the results (and for the nurses to consult with the neurologist to get a better understanding of his plan). The best we can understand is that there were some subtle abnormalities on the EEG; however, these abnormalities do not indicate nocturnal seizures.  These results categorize Bex as "low-risk" of seizure occurrence while taking anti-seizure medication. One thing that was concerning to me was that he had said at our last appointment that he did not want to see us until July, but after this EEG, the nurse told us that he wanted to schedule a follow-up appointment with us soon. Anyways, long story short, he wants to meet to discuss the pros and cons of considering weaning Bex off Topamax, her anti-seizure medicine.  While you never want to hear the word abnormal for any test done on your child and we still aren't sure what they mean, we take it as a positive that he has suggested a potential medication wean despite the abnormalities. 

Neurology Appointments Make Us Neurotic!

Today was our first trip to the neurologist's office in almost 5 months. In the week or so leading up to the appointment, Chris and I had both made passing comments to each other that we weren't too anxious about this upcoming appointment because we have just been so proud of Bexley and all her recent accomplishments.

However, this morning both of us woke up and admitted that we weren't feeling quite so confident anymore. About a week ago, I stumbled across a discussion board on Facebook for parents of children with IS. I have read a lot about how social media is helping parents of children with rare disorders to connect and was excited to have a new resource. Instead of turning into a resource for us, this discussion board actually was just making both of us worry more. I had read about kids developing atonic or head drop seizures. I admitted to Chris I was now questioning whether Bex cocking her head to the side in her high chair might actually be a new type of seizure. Chris had read about kids having seizures in their sleep and was wondering if that was why she has been such a restless sleeper for the last few months. Anyways, before leaving for the appointment, we agreed on two things: a) we are quitting this discussion board and b) we should ask the neurologist for further clarification about these types of seizures instead of consulting Dr. Google.

Are we neurotic, worrywart parents? Absolutely! However, we are both very aware that Bex is at an increased likelihood to develop a new type of seizure in the future. It is important for us to learn to walk the fine line between being knowledgeable about how to distinguish seizures from normal behavior without letting worry about seizures returning consume us. Prior to Bexley being diagnosed with IS, my knowledge of seizures was pretty much limited to what you see on TV and in movies, which is grand mal seizures that leave a person convulsing on the floor. In reality, only a small minority of people actually experience grand mal seizures. There are many other types of seizures out there that can be much more subtle to pick up (i.e., Infantile Spasms).

Anyways, I am getting sidetracked now and need to get back to the appointment itself. Until we were sitting in that appointment, I kind of forgot how much I hate these appointments. The appointments basically involve the neurologist asking us a wide range of questions about Bex's development as well as daily habits while he types on his computer. He doesn't really provide any feedback or reaction to what you tell him.  This really starts to mess with your head and make you question whether everything you are reporting is good or bad. There also always continues to be the debate about whether there is an underlying cause for Bex's IS. Each question he asks makes me start wondering if the information I am providing him is helping bring him closer to figuring out a bigger picture diagnosis for her.

At the conclusion of the appointment, he did recommend a sleep deprived EEG for her to determine if there is any possible epileptic activity causing her to be a restless sleeper. That will be scheduled in the next few weeks. The thought of her experiencing nocturnal seizures bums us out.  One of the reasons that I am always so scared of seizures returning is that I fear that new seizures will hinder her development and wipe away all the progress we have made with her. The silver lining is that if Bex is having nocturnal seizures, they are not interfering with her development and can hopefully be managed with a little modification in medication.

Honestly, with the fear of another diagnosis in the future and a possible return of seizures, Chris and I both left the appointment pretty upset. The negatives almost made us forget one pretty big positive. The neurologist commented twice about how Bexley is very alert and attentive of her social surroundings. He also made the comment that for an IS kid she is actually doing really well developmentally.  We have learned that neurologists are pretty stingy with their positive feedback and comments, so we'll count it as a victory in our book that Bex walked away with two!!

After appointments like today, our motto is always that we let ourselves take the day to feel frustrated, worried, or upset. Then tomorrow we get back to focusing on our sweet little Bexley and all the amazing things she continues to accomplish despite all that she has been through.