Here’s what has been happening over the past few months…
I got to go to Disneyland on my birthday! I even ran into another keto mom who I met in Chicago at the last Charlie Foundation Conference. The world can be so small at times, and you’re not the only keto family out there…even though it often feels like it. Hi Michelle!!
For Charlottes 8th birthday, I drove myself crazy trying to make her a keto (3:1) rainbow cake that people would actually want to eat!
Her cake actually turned out OK! She thought it was great, her other friends were mostly good sports about it and ate some as well. The recipe is the same as the Sprinkle Birthday Cake, but instead coloring the whole batch of batter instead of just the sprinkles. I used India Tree natural food dye and the Stabilized Whipped Cream as the frosting.
In June, I was able to participate in a Ketogenic Cooking Class held at Rady Children’s Hospital in San Diego. This was such a wonderful event for current and new keto families to attend! The hospital chef, Chef Larry, cooked KetoCal meals, I cooked whole-foods based recipes and Tammy Willey presented meals made with Ketocuisine. Parents were able to see meals made at different ratios and approaches to accommodate different types of eaters and needs. It was a great event sponsored by Nutricia North America, organized by RCH dietitian Vanessa Aldaz and the rest of their team. It would be so wonderful if all hospitals were able to offer the same support!
We even took the time to explore La Jolla with the kids. I have always loved it there and we had a great time!
Photo Sensitive Seizure Triggers – Our Horror Story
We have a long history of bad, bad, experiences with Charlotte in pools. Ever since she was about 4 years old, she seems to have a seizure every time she is in a pool. When we lived in Virginia, we had beautiful community pools in our neighborhood that we were so excited to use when we moved there from New Hampshire. Charlotte almost drowned one day while I was holding her. She was in my arms, facing out (away from me). My husband and I were watching our son jump in the water while Charlotte was happily splashing around and secure in my arms. It was busy, loud, hot… a lot going on around us. I actually did not realize when her body movements changed from playing to seizing. It was my husband who noticed her face was in the water (not just looking down and playing as she had been) and she was in a full seizure. It couldn’t have been more than a few seconds, but we were so worried that she had inhaled water. We left the pool via ambulance that day. Nothing worse than sitting in the ER in a soaking wet bathing suit after your child seizes and nearly drowns.. while holding her. As usual, we picked up the pieces and tried to move on… we even went back to the pool, determined to not let Dravet’s Syndrome rule her life. As fate would have it, we left the pool twice more that summer by ambulance. And we never went back. We didn’t put one toe in a pool for the next 3 summers. We thought the trigger was possibly the overstimulation from the water, body temperature change, pool chemicals, ect… we really had no idea other than pool=seizure.
Fast-forward to this past summer, my son who was now 6 years old had no idea how to swim. We felt strongly about giving him the opportunity to learn while he was still young and enrolled him in swim class. I made a deal with Charlotte where she understood she would not be going in the pool but I would bring her fun things to do while we watched JT’s swim class. But guess what… She started having seizures during the swim class while not in the pool! They were very a-typical for her in both frequency and time of day. She was down to about 1 seizure a month (SO GREAT for Dravet’s!) but they were happening weekly, ALL at the pool.
After one seizure, I sat there thinking about why this was happening. Nothing had changed with her diet and meds. She wasn’t going in the water. WHY!??!! Suddenly it hit me, the refection off the pool water was so bright at times, I even had a hard time looking at it with sunglasses on. We already knew TV was a trigger for her, could the reflective pool water act the same way? It turns out that it can. Similar to flashing lights, the reflective pool water took up 100% of her field of vision, and it is too much for her to handle. I did a lot of research about photo-sensitive epilepsy, here is some. Remember Pokemon in 1997? An overview of Photosensitive Seizures, and eventually I found this Zeiss Z1 Blue Lenses article. What stood out to me was the address for Dr. Silver in Sherman Oaks, CA. Literally right around the corner from us. I called his office right away. Charlotte still had not even woken up from her last seizure she had at the pool. When I explained what I was calling about, the nice lady took my message and said he would call me back. The following week, I took the kids to the Getty Museum, I wanted to go see one of my all-time favorite paintings, “Irises” by Vincent van Gogh.
As I was taking this picture with my phone, I was interrupted by an in-coming call. Dr. Silver called me back directly! I briefed him on Charlottes history and our current situation. I was expecting for him to say there would be an enormously long wait to see him, the glasses would be a trillion $$, we would have to go to Germany (Where the lenses are made) to get them, ect… Instead he asked if we could come in the very next day, the lenses would be about $425 and we would have to buy frames to put them in. I couldn’t believe what he was saying, it was almost too easy to be true. So the following week (we waited longer so my husband could go) we drove to Sherman Oaks and met with him. They fitted her for lenses, they even let us buy a less expensive set of frames at Lens Crafters right around the corner, and ordered everything on the spot. Three weeks and $425 later…
…Charlotte has a pair of Zeiss Z1 glasses. Did we run to the closest pool and try them out? NO! I think we’ll wait a little longer for that experiment. She wore them a lot during the summer when she was near any type of water and she is even wearing them at school while she is in a specific room with fluorescent lights. Can I say for sure that they stopped all her seizure triggers? No, absolutely not. But we have returned to her baseline and now we have a little more information and a new tool to help her not have seizures. I would say for sure though, look into these glasses if you think there might be any photosensitive triggers for your kids! Dr. Silvers office apparently works with families over the phone so they can also get these lenses. Dr. Silver is a very interesting person as well! He works in the Hollywood movie industry providing eye prosthetics and cosmetic contact lenses for actors. Here is a link to his office and a list of all the movies he has worked on, It was so neat to meet him in person.
In the beginning of August, we took the kids on a long weekend trip back up to the area we used to live in just north of Sacramento. Steve was stationed at Beale AFB while we were first married, nothing like a little open space to clear your mind!
Like all great parents, we took our kids to the Sierra Nevada Brewery in Chico. Kids love breweries right??! Steve and I could not wait to get back there… they have a great restaurant!
We even went back to the Silver Dollar Speedway which is a sprint car dirt track… the kids thought it was great!
We ate out the whole weekend and I brought all of Charlottes meals pre-prepped and cooked. We stayed in a room with a kitchen, so I cooked a few breakfasts and had a full refrigerator for storage. All in all, it was an easy weekend away. Keto can go anywhere! This is a funny sign…
The end of August, JT and I had to fly back to NJ to attend a baptism. This was only the SECOND time in Charlottes 8 years that I have left her overnight. She was perfectly taken care of by her dad and I was not worried about that a bit. He made all her keto meals and kept her happy! I just don’t like to be far away.
A typical daddy meal.
On the flip side, even though I hated to be away from them, JT and I had some great quality time together. This trip highlighted for me just how much we sacrifice on a daily basis to keep Charlotte safe. Although we try our best to not let it effect things for JT, it does. Not having to think about meals or seizure triggers for 4 days was eye opening for me. I had never been alone with JT for that long. I’m alone with BOTH the kids all the time and alone with Charlotte a lot, but hardly ever with JT. We crammed every activity we could think of into a 4 day period. We went boating, out to eat (no keto planning required), family parties, swimming in pools, the boardwalk twice (on every ride including ones that spin with flashing lights!), stayed up way past bed times, ate every sugar filled food we could find and flew across country without a bag of medicine, food and letters. It is hard to put into words how much Charlottes epilepsy has changed me, my husband and our family. You can not truly understand what someone goes through unless you walk in their shoes. And I do have to say, I am immensely proud of JT who at only 6 has been such a supportive little (big) brother to Charlotte. Although he has never known anything different, he is kind, understanding, patient and sensitive to her and others needs. He is grateful, happy and appreciative when we do fun things for him and I couldn’t ask for a better son 😉
As the summer came to a close, we enjoyed our beach and made sure to catch lots of sunsets. School was right around the corner!
The first week of September, school started! We were so lucky to have the same one on one nurse with Charlotte this year. It made the whole new school year process go so smoothly. Since CA does not have full time school nurses, we were able to have the school hire a personal LVN for Charlotte. She is both a educational aide and a board certified nurse who is trained in seizure first aid. We are so lucky to have her!
At the end of September, another speaking opportunity came up and I was able to be a parent speaker at the National Society of Genetic Counselors conference in October. I thought the idea was a great one, for genetic counselors to hear directly from parents regarding their experiences with genetic screenings and syndromes. I thought I would be able to deliver a great perspective about our families thought process and state of mind during the journey to Charlottes diagnosis. I wanted it to be meaningful to the people who often times are part of finding and giving a diagnosis. I was the third parent to speak and after listening to the first 2 parents before me, I was a wreck. I cried the entire time I was speaking. I got my message across as I had prepared it, but I think the main message the genetic councilors took away was how emotionally draining life is and can be when you receive a devastating diagnosis for your child. All three of us who spoke had lots of happy times and pictures to share. We all spoke about the hardest times for our families as well. We are all “functioning” and going through our lives taking each day as it comes. However, at the end of the day, underneath all of the good, happy memories, and the ability to go on with our lives, parents (like me) always remain scared out of our minds, sad for things lost along the way, and terrified of the future bad times that inevitably will happen. Nothing can make those feelings go away, no matter how well things are currently going. It was a worthwhile experience, despite it bringing all those emotions to the surface.
I have still be working on recipes for the Charlie Foundation. They are very close to launching a new website and updated version of the KetoDietCalculator. There is a backlog of recipes that will show up there very soon! I have also been busy helping the CF with their social media outlets on Facebook and Pinterest. This has been a great way for keto families to connect. So if your not following the CF on Facebook already, make sure you do! Here is a link to their main FB page. https://www.facebook.com/TheCharlieFoundation