Baby Steps

Sunday, November 17, 2013

A father's perspective

Justin wrote this and I couldn't have said it better....

It’s a Friday night at 10 o’oclock and I just got out of bed, unable to sleep due to another episode that disturbs the calmness of an unfamiliar apartment in a new city. The lack of sparkle in her eyes as she enters yet another cluster of spasms tears the peaceful slumber away from my child. Hour after hour, waiting for the next one to come. Counting. Tracking. Watching. There is nothing we can do. They come at all hours of the day. Without warning. Everything is dropped to helplessly watch. Is she still breathing? Does she need emergency medication? When will it stop?
Everyone tells you that having a kid will change your life. I don’t think this is what they meant.
For the past two years, my wife and I have watched our first born seize uncontrollably every single day. Piper was born with a rare genetic condition, Aicardi Syndrome, which resulted in the corpus callosum to never develop and an intractable form of epilepsy called Infantile Spasms. Since the age of three months, she has seized every day. This is definitely not what I expected fatherhood to be. But, I have learned some truisms in these past two years. I have learned what unconditional love really is. I have learned that an education bought at an elite school of medicine does not lead to supreme knowledge. I have learned that you can only rely on yourself and the wise people around you.
Over the past two years, my wife and I have battled for our daughter. Every stone has been turned. 17 doctors, 9 anti-epilepsy drugs, 1 severe diet, 6 supplements, 50,000+ seizures, 1,300 miles, thousands of friends, 1 last doctor prescribed drug that could lead to liver failure. We have learned to live by numbers. Numbers that have altered our perspective on parenthood. Numbers that bring a community together for a controversy.
On August 1, 2013, my wife and daughter entered the state of Colorado. We have moved away from those thousands of friends to join a new controversial community. A community that has become addicted to marijuana. We have moved to Colorado to take part in a movement of parents of epileptic children who are trying cannabis as a last ditch effort to heal their children.  
Marijuana. The word has carries some weight that will not set easy with many of you. Trust me, it was not an easy decision. I too once believed that medical marijuana was a smokescreen for people to use the drug recreationally. Not too long ago, my mind was changed. I learned of a 5 year old girl named Charlotte Figi. Charlotte has Dravet Syndrome, another form of intractable epilepsy. Charlotte’s parents were in a similar situation as us and were at the end of pharmaceutical treatment. Charlotte’s parents then found a group of brothers growing a strain of marijuana with low THC (the only psychoactive compound in the plant) and high CBD (cannabidiol, another compound in the plant). They had nothing to lose. Guess what…it worked. The first dose, Charlotte went a week without a seizure. As a frame of reference, she had 300 the week before.
She’s not the only one. Now hundreds of parents, including many from Tennessee, are moving their children across the country to get access to the now named Charlotte’s Web. There’s been some media. Perhaps you’ve heard.  Guess what…it’s working for a lot of kids.
To give you an idea of our expectations, we do not think it will work. But, we don’t think anything will work at this point. Another truism, skepticism. We have accepted that this is our daughter and she has influenced more lives in two years than I have in my 28. She has a purpose, to teach.
Piper started on Charlotte’s Web on October 24th. We give three doses per day in an oil form. For three weeks we have been increasing the dose. It’s never easy.
This week, we have had two newspaper articles and two local news channels report on our journey. Through social media, I have read 600+ comments on these reports and come across 3 dissenters. I don’t know what is coming next, but if you are still reading, I ask for you to remove your assumptions, your fears, and the unknown and ask yourself why.
These past three weeks, we have seen bad days, like today, but we have seen some of the best days. Compared to one of the worst days, Valentine’s Day 2012 – 379 spasms. Three days this week she has had 2-3 spasms. Can we say it is attributed to cannabis? I’m optimistic, but it’s not where I want to be – zero
I don’t know where our journey will take us, but I hope that Piper has fulfilled her purpose and taught you to examine the possibility. I don’t know that we will ever be able to come

Saturday, November 9, 2013

Charlotte's Web First Two Weeks

Piper had her first dose of CW on October 24. We are hoping this is a date we will always remember, a date that replaces the anniversary of the onset of seizures, and other things we would like to forget. To be honest the first two weeks have been rocky. The day after her first dose, I started having symptoms of a stomach bug. Piper did not seem to have any symptoms so I figured it was something I ate. After the initial dose, I didn't see any immediate changes except she was a little sleepier than normal. The next day she looked terrible and had symptoms of a stomach bug too. She slept more than I have seen her sleep in a very long time. I hoped it was the new medicine calming her down and letting her get some rest but it seemed she was just her fighting off a virus. It took five days for her to start feeling better and then she had three excellent days! Halloween was the best day she has every had in her life. She was smiling, giggling and playing all day. She was very aware and responsive to us. I think she was excited to finally have her dada home. She also had the closest to a seizure free day that we have ever seen, she only had on single spasm!  We haven't had that kind of hope in a very long time.

Since Halloween we have had a rough time. We noticed that she was cutting a molar and started seeing an increase in seizure activity. Teething has always been a trigger of seizures but it has been almost a year since she had a tooth come in so we don't remember how bad it is. Seizures have been all of the place and we have seen some pretty rough ones. We have seen tonic "typical" seizures that we rarely ever see. She had 5 in one day and that never happens. We normally see 1-2 tonic seizures a month. We have used "rescue" diazepam multiple times to help her body get a break from the seizures. We noticed three days ago that she has another tooth coming in as well!We are praying that teething is the cause of all of the bad seizure activity and that she will get over it soon. We have heard from a few doctors and the dentist that teething is a developmental milestone. The interesting thing is right after we started CBD oil she has an influx of teeth appearing and we are curious if there is a correlation.

 Since we have so many additional factors like sickness and teething it has been hard to see how well  the medicine is working. We do know that she has never had a seizure free day and she was very close and that is very promising. When she had a break between being sick and teething she has some really good days so we think the medicine is helping but we won't be able to tell how well until she feels better. She is still on a low dose and we will be increasing to her full dose over the next two weeks. We have talked to a few families who saw results after 4-6 months of adjusting dose and weaning pharmaceuticals and this may be the case for Piper.

We have been involved in getting our story out to the public. We were contacted by a reporter from the Salt Lake City Tribune about a week before we started treatment. She was interested in doing a story about us and wanted to fly in to Denver ASAP to interview us. She actually was able to be here for Piper's first dose of the oil and did an interview. The story should run tomorrow and we will send out the link for everyone to read. We also were able to participate in an interview done by the local news in Denver. All of the families who are involved with the Realm of Caring met at the grow and were able to tour the grow houses and see the plants. While we were being interviewed Piper had a seizure on camera and made the news lady cry. I guess it was the right time to have one since they are trying to show people how desperately our children need this treatment.

We continue to pray and have hope that we are doing the right thing for Piper. Even if it doesn't help her as much as we want we have seen how much it has helped other children. I sat next to Charlotte Figi at dinner the other night and could not take my eyes off of her. It is truly amazing what this oil has done for her. She was talking, playing and fed herself dinner. To see where she was in the videos at her worst point and to see her in person, thriving, was truly amazing. We hope that we can at least spread the word about this treatment so that one day every sick child has a chance to try it without having to move across the country.