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. 

2015: Trending in the Right Direction

I know it’s been a while since Lindsey and I have provided an update on Bex, so here we go!

15 month Check Up:

Bex had her 15 month check up with the pediatrician today (which also required some shots).  As you are aware, Lindsey and I usually dread these appointments because we always seem to get some sort of “blah” news or another item to worry about.  However, this time it went relatively well!  She gained weight, grew in height, and her head circumference got bigger.  While there were some small fluctuations within the percentiles, everything looked to be trending in the right direction.  This was also the first time we left a well child check-up without a referral to a specialist in 9 months…woohoo! Our Pediatrician was pleased and so were we!

Bexley is learning new tricks:

Of course, our Pediatrician asked how Bexley was doing from a developmental standpoint.  We relayed that she is making strides with her physical therapy and she is also learning to mimic more.  While visiting my family recently in Houston, we taught her to blow kisses (sort of).  Our Bexley continues to make moves at her own pace and we are very proud of her!

Connecting with Others:

Lindsey and I have recently been able to connect with parents who have a child that also experienced Infantile Spasms.  Lindsey has been communicating with a mother living in a different state via email and I spoke with a father last week.  To say my conversation with this dad was beneficial would be an understatement.  First of all, he was a great guy and I really appreciated him taking the time to chat.  Being able to talk to him about his experiences with IS and his child’s development going forward was very helpful.  This was the first time I have been able to share my concerns and fears with someone who has “walked in my shoes” so to speak.

The best part was this conversation was…natural.  Let me explain what I mean by that.  Lindsey and I can struggle to relate to fellow parents at times because our experience with parenthood so far has been different from the norm.   This is not a knock on other families, it’s just the truth.  However, when I was talking with this dad, every time he shared an experience with his child I was like, “Yes, we did the same” or “Bex went through that too” or “We used the same medication.”  During that conversation I felt like a regular parent, just shooting the ‘you know’ with a fellow dad.  I can’t tell you how happy I felt in that moment.  We are hoping to meet with this family in person in the near future.

Great Advice:

 I’m paraphrasing here, but the fellow dad gave me one really great piece of advice - “Don’t worry about the future.  You don’t know what will happen…just enjoy the now.”  This goes along with resolution #4 from the last blog post.  I did have a moment of weakness with this resolution.  We recently visited my family in Houston.  At the airport on the way back, I noticed an older family whose adult son had special needs.  He needed his parents’ help with ordering food and other basic life skills.  For a moment, I had that quick fearful feeling – will this be Lindsey and I with Bex in the future?  But then, I took a deep breath and I remembered what that father told me and our resolution.  Then I looked at my daughter, picked her up, and told her I loved her and would take care of her no matter what.  Also, I reminded myself that the family and son looked really happy…so I would be lucky if we turned out like them.

By the way…

In case you missed it, Lindsey and Bex were featured on the website “The Mighty.”  If you want to check it out, click here.

Happy New Year!!!

This post isn’t necessarily an update on Bexley.  Lindsey and I wanted to share our New Year’s resolutions that have come to fruition through the challenges we faced with Bex in 2014.  Part of the reason we started this blog was to share our experiences with the hopes they could help out other parents who are facing similar obstacles.

Resolution #1: Be Flexible.  We all tend to make goals for the New Year, whether it be a target weight, a career goal, or a lifestyle change.  We put it on paper and we shoot to hit it and many times we don’t.  A big reason for that is because we try to stick to that exact goal, even if it isn’t entirely realistic.  We learned with Bex and her IFSP (Individualized Family Service Plan or IEP for babies) that you have to be flexible with your objectives.  For example, we had the goal of “sitting up by herself” for Bex to reach by the end of the year.  She didn’t meet that goal.  She isn’t physically ready for that milestone yet…and that is okay.  We have learned what she is capable of now and we work to challenge her to continue to make progress.  We celebrate her victories and progress, but there are no timelines or expectations about what she will accomplish in the next year or by when.  There is nothing more frustrating than failing to meet a goal.  This isn’t cheating either, its being realistic.

Resolution #2:  Don’t sweat the small stuff!  2014 was a challenging year from a personal standpoint and also with my job.  Not that I was in a bad place with my career or company, I just was dealing with a lot of extra responsibilities.  Let’s just say I was probably averaging 60-70 hour work weeks easily, with some stressful situations.  The funny thing is I realized I lost sleep over things I couldn’t control and that were microscopic in the grand scheme of life.  We also dealt with serious water damage to our house and a total revamp of our bottom floor earlier in the year.  This led to a lot of stressful situations that in the end were laughable compared to what we went through with Bexley.  The house all came together, a job is a job, and most importantly we were able to get through the most difficult thing we have ever experienced with all of the medical issues with Bex.  We have a happy baby girl, so why sweat the small stuff?

Resolution #3:  At the end of each day, find two positives or two things to be thankful for. It is easy to get caught up in the daily routines without really “stopping to smell the roses.” Some days it can be easy to let worry or frustration with the hand that we have been dealt overshadow all the blessings in our life. Therefore, Lindsey and I would like to make the effort to end each day by identifying two things that we feel thankful for, so that we continue to remind ourselves daily that even on the tough days, there is a lot of good.  

Resolution #4: I owe this one to the great Scarlett O’Hara who delivered one of the best movie lines ever – “I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow.”  With everything we have experienced with Bex, we can’t help but wonder what the future holds for her.  A lot of the things that you assume your child will do are called into question when you are given diagnoses like abnormal brain MRIs and Infantile Spasms. Will she walk?  Will she talk?  Will she go to school?  If she does, what type of school?  Will she learn to read and write? Will she be bullied?  What happens when she becomes an adult?  What if this or what if that…all constant worries.  Sure, these are similar concerns for every parent, but they are on a different level when you are a parent of a child dealing with developmental delays and that is the truth. What we have learned is there is no point to stress over these things today or else we will make ourselves sick.  More importantly, we will miss out on all the good stuff that happens (hence, the point of resolution #3).  With Bexley there are a lot of good moments every day and many more to come…so why focus on the “what ifs.”  Frankly my dear, I don’t give a damn about the “what ifs” anymore.  Sorry I couldn’t resist.  By the way, how good is Gone With the Wind…right?

Happy New Year to all! Thank you for following Bex and all of your support.  2015 is going to be a great year and we look forward to sharing our moments with you!

No Zebras here!

We had a productive week with Miss Bexley.  The first order of business was a visit to the pediatric dentist.  If you remember from our last blog post, our pediatrician made the recommendation that Bex should see a dentist because she still doesn't have any teeth.  At first I was a little annoyed about this, because I figured we still had some time before we should be too concerned about the lack of teeth.  However, I can understand with Bex's history that he would refer us to someone.

Yet, as expected, the hoofbeats were horses and not zebras.  The dentist showed us Bex's gums and told us there were a bunch of teeth willing and ready to come out.  So for now we just have to continue to play the waiting game until those pearly whites make their appearance.

That was a nice win in our book and there were two more as well!  Bex has started saying "ma ma" consistently.  While she is not necessarily correlating it with Lindsey, the fact that it is moving into the babbling stage of speech is promising.  This is important because Topomax (her seizure medication) can delay speech.  So she's moving in the right direction even with the hurdle of a medication side effect to overcome!  Now I just have to bribe Bex to start saying "da da."

The other HUGE win for Bex was that she turned over from her back to her stomach!!!  We have been waiting for her to do this consistently and she did it 5 times today!  She even did it for her Buela (grandma) on FT...so performing in front of a crowd.  It was actually a nice surprise, because she didn't necessarily have the best physical therapy session yesterday.  She was a bit of a grouch to say the least..like her daddy when he doesn't get his coffee in the morning.  We couldn't be more proud of her.  Today was one of those days where Lindsey and I felt that all of the tough PT sessions or constant hours of work throughout the day with Bex are totally worth it.

I've said it before and I'll say it again...my baby girl will move mountains!!!

An Update From Team Bex

Bex is 13 months old today, which made Chris and I realize that it has been a month since we lasted posted an update on Bex.  Here is an update about what has been going on for Team Bex over the last month:

12-Month Well Baby Visit: After everything we have been through with Bex, Chris and I even dread the standard Well Baby check-ups. When they put her on the scale and she had only gained a few ounces since her 9-month check-up, my immediate reaction was to panic about what red flags this would send up. She did grow in height and head circumference, so those were all positives.  Surprisingly, the pediatrician was not too concerned about her lack of weight gain. Bex did gain a decent amount of weight on ACTH (2 pounds in the first week), so it seems that her body is just starting to balance back out and her weight is back into the “pre-ACTH” percentile. While Bex is showing a lot of signs that she is starting to cut teeth, she does not have any teeth yet. Since she is one and does not have teeth, we have to make an appointment with a pediatric dentist for her to get x-rays to make sure there are baby teeth under the gums. Chris and I have often speculated that ACTH may have stalled or delayed the teething process for her, but it has been recommended that we see a dentist to make sure that is the case and to confirm there is not something else going on.  

Genetics: As you may remember, the results to the Genetic Epilepsy Panel came back with one gene that had a variant of unknown significance.  Since genetics is such a new and evolving field, it can be confusing at times. Our best understanding is that a variant of unknown significance is different from the norm; however, at this point, genetics does not have an understanding about what that variant means. As research progresses, it could be determined that this variant means absolutely nothing or additional research could help provide insight into what this variant means about prognosis. Anyways, genetics had required Bex to have an additional urine test done due to the variant. We got those results last week and they all came back within the normal range. Yay! Thankfully, there are no additional tests that they want to run at this point. We will follow-up with genetics again in May to discuss Bex’s development and determine where we go from there. 

NC Epilepsy Foundation: Last Tuesday, Chris, Bexley, and I met with the Chair of the NC Epilepsy Foundation, Pat Gibson. This was the Foundation where we donated the funds from our Team Bex fundraiser. Pat Gibson participated in some of the first IS Conferences back in the 80s.  This was the first time that Chris and I actually had the chance to sit down and talk with someone who is knowledgeable about IS as well as compassionate to some of the challenges that we faced at diagnosis and continue to face with Bexley moving forward. It was a really great meeting.  We are excited about some of the things they plan to do with the money we donated and we hope to stay involved in helping to raise awareness and provide support to other newly diagnosed families. She is also hopefully going to try to hook us up with some families in the area, who are facing similar situations.  We are keeping our fingers crossed that this will work out because it would be nice to develop a support network of families who understand what it is like to juggle doctor’s appointments, remember to fit therapy into your daily routines as much as possible, and live with some of the unknowns about the future. 

 

As long as we don’t have any unforeseen circumstances pop up, we should have a break from doctor’s appointments until February. Hopefully, that will be the case because Chris and I always like it best when we can stay in our “Bex Bubble” without any doctor’s bursting it.