“If it were not for this tiny little genetic mutation, would she be a softball player, a dancer, or a musician? Would she be a good student?”

– Shannon Cloud, DSF Parent Ambassador

This week’s guest blog post comes from DSF Southeast Parent Ambassador Shannon Cloud. Shannon lives in Smyrna, GA (in the metro Atlanta area) with her husband Blaine and their three children.  Their oldest child, Alaina, was diagnosed with Dravet Syndrome in 2009 at age 4.

Shannon is originally from Pickerington, Ohio and graduated from Florida State University in 1997 with a degree in Management Information Systems.  She recently left a 20 year career in IT consulting to focus more on her family, advocacy and helping others.  She and her husband have been advocating for medical cannabis in Georgia for several years on behalf of Alaina and patients with other debilitating conditions.

Shannon and her family have attended all three DSF conferences and have worked with other Atlanta area families to host several walk events to benefit the DSF since 2011.  She is looking forward to the opportunity to help other Dravet parents on their journey.


Parenting a Teen with Dravet Syndrome

Things can change frequently and unexpectedly when you have a child with Dravet syndrome. Every child is different, but most of us find that we go through some very similar phases during their journey to adulthood. The teen years can be easier for some and harder for others, but this period certainly brings new challenges regardless of what seizure control is like.

My daughter Alaina just turned 14 and it is safe to say we have a legitimate teenager on our hands. She has had an attitude for a long time, but now I can see a glimmer of typical teen behavior as she emphatically yells “No!” when we tell her to do something. She’s looking less like a little girl and more like a young woman.

It has been almost 10 years since her Dravet diagnosis. We are hopeful that the hardest years, at least in terms of the seizures, are well behind us now. Status seizures and rescue meds are a thing of the distant past. We are still very aware of potential triggers and can’t totally let our guard down, but doing things like swimming, jumping on a trampoline, or just being outside on a hot day are no longer almost certainly going to result in a seizure. Life in general has gotten easier. Some of that is because she has matured in ways we never thought possible and some is because we are just generally more comfortable with who she is and how to manage from day to day. We don’t worry about her finding an open door and getting out of our house like we used to. We don’t let the fear of a seizure keep us from going on long hikes in the woods or other activities that we may not have been comfortable with when she was younger. When we plan a vacation, we don’t think about whether there is a good hospital nearby. I can even manage a trip into Target with her without totally losing my mind!

As with most of our kids as they get older, the cognitive and social gaps between Alaina and same-age peers have become much more significant. Now that she is in middle school, it is hard not to think about what she “should” be doing since this is when many kids start to grow into who they will be. She “should” be going to the after school parties and dances at her school. She “should” have participated in confirmation at our church this year with all of the other 7th graders. She “should” be sitting on a lounge chair at our neighborhood pool with the other girls. She “should” be fighting me on what she’s allowed to wear to school. If it were not for this tiny little genetic mutation, would she be a softball player, a dancer, or a musician? Would she be a good student? Of course, the reminders are even more present thanks to social media. We get to see other parents celebrating the accomplishments of their children and as happy as we are for them, sometimes it still hurts. Yet somehow I always feel a little guilty if I post about Alaina being on the “All A Honor Roll” because it seems as if it is not fair to the kid who worked really hard in typical grade-level classes and just barely missed getting that award when my child who is stuck on 1st grade material is given such a high honor without being held to the same standards.

Many of us struggle during the earlier years about what is best for our kids in terms of school. Do we try to keep them mainstreamed as much as possible or allow them to be in a special needs only class where they won’t get as much interaction with typical kids? We are thankful that we didn’t try to push Alaina to be in a general education classroom where she wouldn’t understand most of what is being taught.  We know that a small group class is exactly where she needs to be. She is taught on a level that is appropriate for her and she has friendships with other kids that are similar to her in many ways. Alaina has been with some of the same kids since they started off in special needs pre-k when they were just three years old. They love (and annoy) each other like siblings. She may not fully understand true friendship, but I never really thought that was something she’d have in her life and we’re so thankful for these amazing kids and their families.

Even after 14 years there are still challenges with finding the right balances of seizure control, behavior, sleep, speech, appetite and quality of life. It seems that we are quite often tweaking some med in order to try to fix one of those things without messing up what is going well with something else. Seizure control is not the highest priority like it might have been in the early years, though.

We know that things could change for Alaina in an instant, but for this moment we are enjoying our teenager and trying not to worry about the future. Despite the tendency to contemplate what life would be like for her without Dravet syndrome, we know that she is exactly who she was intended to be and our job is simply to try to make the best decisions we can while fighting for a cure!