Sympathy Candy

I knew there was a reason for Melanie's poor behavior all week: she was gearing up for a seizure. Many Dravet kids have that in common, and it looks like Melanie is joining that trend.

Just a little before getting ready to go out trick-or-treating tonight, while eating supper she began seizing. We have a neighborhood block party sort of night each year, and we had a couple families over for a party. We were eating in the garage before starting a fire and going out for ToT. It looked like Melanie was going to miss out, after an entire day of anticipation, but she heard the kids playing outside and mumbled, "I-ahh-trick-a-treat!" She begged and I was not about to deny her. So, SO thankful for the back carrier made by a Dravet grandma! We made it all the way up and down our street, three blocks. I was honest when people asked or commented on our arrangement, and we got some extra sympathy candy. :-) So, there's something.

I'm going to go take a hot shower now and rest with the heating pad...

Had no idea her costume would be so fitting tonight!

She was pretty weak, but very happy to go out in the fun.

Back to our once-a-month pattern??

Melanie had another seizure last Friday. She is not sick, so I'm not sure what the trigger was. Perhaps it was the excitement of Daddy pulling into the driveway. She and James were outside playing: she was not too hot or cold and she had her sunglasses on. In fact, she had asked if she could go outside and I said, "Yeah, hold on," while I was bustling around the house. Before I knew it, she had her shoes and glasses on and had let herself out. My big girl! I stayed inside to do some things, keeping a close ear out. Thankfully, Melanie talks and exclaims constantly while she plays so I don't really have to have an eye on her at all times. At some point, I heard Nick pull in, but I did not hear the usual, "Oh! Hi Daddy!! Daddy, you home! Aw, hi Daddy!" Just silence. Then, "James, go get mommy." He found her sitting on a trike, looking upward.

I tried some potent essential oil under her nose, as many parents report that can wake up their kid's brain from a partial seizure. But at minute 2 or 3 we saw it move into her hand, so I sprayed the rescue med. The last minute of this one looked odd and frightening. Nick grabbed the phone and turned it on, but I told him to wait. Then it ended. I believe she is spared the memory of anything unpleasant.

James always tells her to say something, and "Melanie, why aren't you talking?" during a seizure. Well, it took a while for her to come-to. Still not sure if that unresponsive sleepy state is non-convulsive status epilepticus, or if it's just her post-ictal brain-recovery state. I need some better answers from our neurologist. (Or any seizure parents reading this with some insight?)

Good news is that she recovered pretty well from this one. She looked more "seizurey" for about 3 days afterward and her endurance was definitely diminished, but we haven't seen the intense behaviors and refusal to listen too much this time. All of those after-effects tend to linger for a couple weeks, until her light clicks back on suddenly and we see our sparkley little Rose.

In the last roughly three months, our online Dravet community has mourned the intense struggle and loss of three young children who suffered "that one seizure" which landed them in the PICU in a coma, as their organs shut down one by one. Today it was a family across the world, but a wound close to home.

The Ugly Thief

...has carved another hole into another family, leaving empty arms where a darling son and little brother should be.

We've had at least five different Dravet kids go into crisis, in ICU, all around the same time here. Some coming around, others not at all... This syndrome is an ugly, nasty thief. It comes in the sunshine. A child has been seizure-free for months, even years: so healthy in so many ways. Then WHAM! The seizure that takes it all away. Or it slips them away in their sleep for no known reason.

I hate that the word "hope" has become a happy, touchy-feely empty word thrown around when hurting people are searching for something, anything to cling to. It is such a deep, real human need, yet the answer so many latch on to is this carved out shell of a truly BEAUTIFUL word! When Hope is rooted in the Creator of the universe, our loving Father in Heaven, there is nothing more beautiful and fulfilling. And what an answer to pain! What an answer to suffering and death! God the Son has conquered death: what could be better than putting your hope in Him? the conqueror of death?! There is no other way to survive the pain of this world and remain whole. There is no other way to escape death yourself.

I have hope that these children who have suffered greatly in their earthly lives, being robbed of the mental capacity to understand these profound spiritual truths, are welcomed into the gates to join all the saints before the Lord to sing his praises for eternity. No more pain, seizures, tears, suffering... I believe this because I know the loving God whom we serve. There is much pain and death in this world broken by sin. Not one drop of it is allowed in the presence of God.

Please watch this and pass it on

This is the documentary called WEED, by Dr. Sanjay Gupta, which aired Sunday night, August 11 on CNN. Please excuse the angry title attached to this YouTube video, but it is the full 42-minute show.
Dr. Gupta highlights one of the pioneering families for using cannabis (medical marijuana) to treat Dravet: the Figis. The beloved Stanley brothers in CO have developed a strain named after the daughter, called Charlotte's Web. It's extremely low in THC (psychoactive) and very high in CBD (medicinal), and every family wants it! Including us! Please watch with an open mind. I believe Dr. Gupta did a great job covering this controversial subject in a fair way. And remember that Charlotte's story could easily be Melanie's, as they do have the same syndrome.

http://www.youtube.com/watch?v=Vdiu-samktQ&nomobile=1&gl=US&guid&hl=en&client=mv-google

And here is a good article outlining this doctor's change of heart on medical marijuana and his research-based reasoning:

http://www.cnn.com/2013/08/08/health/gupta-changed-mind-marijuana

Please check it out, and pass it on, and contact your representatives. The pharmaceuticals are harming Melanie and won't work forever. We need this to become a compassionate state, legalizing medical marijuana. I don't care one bit about recreational use: I just want this completely natural, effective and safe medicine for my daughter. She would not get high, and she would take it as a tincture or a pill. This plant is not merely used to ease pain, as I used to think: it literally cures most seizures in many, many patients (not to mention cancer and a host of other diseases). Cannabis has been used as a highly effective medicine throughout history, and there are no side effects (when using a low-THC strain).

Try on Grandma's Shoes

So, imagine that you and your husband plan a big, exciting trip to a child's paradise, to enjoy an exciting vacation with your precious grandchildren. In the late afternoon of your first full day there, you are alone with your little "princess," as the Disney cast members call her, and the two of you enjoy multiple trips on her two favorite rides. When she goes limp as you walk off your third carousel ride, the magic comes crashing down. You've seen her have a seizure once before, in her own home, with her parents there to take action, and it ends quickly. That was painful to watch.

Now it's all on you. You're in a crowd of strangers and have to run 10 feet to the stroller parked in front of the cute flying elephants. You have your son's coat to lay on the ground, you have the rescue med with instructions tucked somewhere in your brain and on a card, which suddenly seem to be written in Chinese. You know she needs that right away, but her parents need to be contacted right away. So which - when - how - wait, first - no, maybe - where - how - breathe --- Suddenly you hear two women's voices: "Do you need help?" "Yes! Take this phone and call Nick." Phew, that's taken care of. Now, how do you spray this stuff up her nose? Pull? No, twist. Why is it shaking so much? Oh, that's your hands. Ok, breathe. You get it in, but you're not sure if you pushed it fast enough, or if it just dripped in there. Then an angel in the form of an ER doctor shows up. He gives her another dose, making sure it's sprayed and absorbed. He assures you she is ok, even though she is turning blue. He continually checks her pulse and asks if you have a cloth to catch the spit up he correctly predicts will come. He brings a confident calmness to the situation. A woman is holding her hand. The parents arrive. It's no longer all on you, but how do you feel now??

I sincerely hope you feel not an ounce of guilt for any part of any of it. As far as a trigger: it was a culmination of everything loaded on her senses over the last two days: sleep deprivation, travel, hunger, heat, excitement, noise, movement, newness... And as far as the medicine: you should have seen my first time with the atomizer! And that was in the quiet of my own home. I think Gramma deserves a trophy for the way she handled this nightmare, but I don't want to give her anything that will remind her of this horrid scene. So I invite everyone to leave a comment on this post, giving kudos to grandma for handling this frightening situation so well.

And by the way, that doctor just "happened" to be spending the day at Disneyland with his family, when his wife alerted him to what was going on. How could anyone not see God's providence in that? He even knew what Dravet was. And he stopped by the first aid station later to ask how she was doing.

All of the Disney workers/cast members took care of us so well. They even cleared out all the beds when we arrived to first aid. They offered us stickers and front-of-the-line passes for our lost fun time. They brought in Pluto for our own private meeting, lighting up Melanie's face and healing her with giggles.

While we were recovering at First Aid, I got a call from Michele, a mom whose beautifully long-lashed son :-) also has Dravet. They live very close to Disneyland and visit regularly. We were hoping to meet up for dinner that night, but instead when I told her what happened, she told me which hospital we would want to go to, what doctors to ask for, and to call her if we wound up going there-- even in the middle of the night. Imagine the comfort that brought me! A friend, protector, advocate so close by! We were able to meet Tuesday morning over breakfast, and we all got in a couple rides together, before Melanie headed back for a nap and James, mom and dad went on the Star Wars ride again. I wished we'd had more time to talk, but I'm so glad we met!

I will be writing thank you notes to all of these people for their help, and if anyone would like to send me some thoughts and thanks to add, I'll be happy to include them. I only wish I knew who the two women were who helped in the first moments and held Melanie's hand. I hope they know we're all grateful. Praise God for His protection.

"for you have been my help, and in the shadow of your wings I will sing for joy.
My soul clings to you; your right hand upholds me."
Psalm 63:7,8

Random Kid at Disney Schooled by Tiger Mom

At Disneyland, a 5 year old girl and her grandmother were walking away from the Carousel ride in the Fantasyland portion of the park, when the little girl began to have a seizure. The girl showed no signs of overheating or overstimulation before the incident, and the parents, brother and grandfather of the girl were not with them at the time. Instead, they were waiting for the pair in front of the infamous "It's a Small World" ride (also in Fantasyland), after enjoying their time in "Star Tours" in the Tomorrlowland portion of the park.
Close to 6pm, the father received a cell phone call from a stranger using his mother's phone, telling him to come quickly to the Dumbo ride, as his daughter was having a seizure. The mother took off, dashing through crowds and jumping over stroller wheels. After circling around the Dumbo ride, she and the father finally spotted a group of people bending over the ground and shouldered their way through the gawkers.
After kneeling at her daughter's side, a man she'd barely noticed informed the mother that he was a doctor at a local hospital and that he had administered the midazolam. The seizure had ended by this time, and the girl was in the post-ictal state, which is the state of recovery immediately following a seizure, when the brain is trying to calm down and return to its normal state. A little while later, the mother noticed an unidentified woman holding her daughter's hand, and at unknown times and intervals, security men and nurses from First Aid arrived. The girl was put on oxygen, as she had turned blue for a few minutes during the seizure. After a short while, the mother was seated in a wheelchair, holding the girl- with oxygen mask- to be transported to the First Aid station. The bumpy ride woke the girl only slightly from her post-ictal unconsciousness, as the mother averted the stares from passers by. The security men walked in front of the group, yelling to everyone to step aside, as if alerting guests to a parade coming through. The mother related to her daughter that she should open her eyes to see the royal treatment she was receiving.
The girl was able to recover and awake on a bed in the First Aid station. After a time, as the family were about to leave, with the girl comfortable in her stroller, a nurse informed them that they should wait for a visiter who wished to see her. The girl was at this time awake but groggy and not in a happy mood. Moments later, in walked Pluto, and the girl's face lit up with groggy giggles. She most loved the tickley whiskers in her face. She got many high-fives, blown kisses and nose pets. Her brother also enjoyed the personal visit. The family posed for a picture with the orange character and thanked him for the visit.
The three females of the group headed back to the hotel so the girl could finish recovering in her sleep, while the three males stayed in the park to visit more rides.
Just after exiting the park, the women saw a young boy of 11 or 12 years crash into a trash can and fall to the ground. The boy's friends began laughing as the boy lay on the ground and began shaking, faking a seizure. The boy got up to walk on, but he had no idea there was a Tiger Mom looking on whose protective instincts were especially heightened. The mother of the girl walked swiftly over to the boy, held him gently by the shoulder, looked him in the eye and said, "My daughter just had a REAL seizure on the ground, and it was NOT funny. Please remember that." The boy clearly got the message and said, "ok." Then the boy's aggravated father walked up and said, "You wanna let go of him now?" The mother let go and said the same thing to the boy's father. The man changed his tone only slightly and said, "Well, I'm sorry about that." Then the girl's mother turned and walked away before the situation could continue any further. As they walked, the mother said to her mother-in-law, "Well, he won't forget that."
Thus, a boy, his friends and his family have now been schooled by a fierce Tiger Mom, protecting the dignity of her sweet Tiger Cub and all others who suffer from seizures.

Too much fun

Last Friday we had a sudden, heavy downpour while out for a walk. We came home and sat on the front porch to watch it, but the kids wound up running around, playing in the rain. Pretty soon there was a river gushing down the street gutter and Melanie, James and best bud across the street were running through the river-- having a blast! After a while, the boys were still in the gutter, I was standing in the neighbors' driveway, and Melanie was smiling up at the neighbor... Then I hear "uh oh, uh oh!" I turn around to see Melanie slowly crash her face into their fender on her way down. I scooped her up, kicked off my sandals and ran across the street. Nick was inside and saw me coming, so he had the midazolam ready when we got inside.

She was fine by the next morning. There's always a little more sass and a little less fine motor ability the next day, but she's ok.

She's not ill. This was triggered by the extremely exciting fun in the pouring rain. We'll just have to be more careful next time.