Today marks one year since Maddie took her first dose of Charlotte’s Web oil. So much has happened over the year it would be overkill to try to list it all. I am going to try to hit the high points at least since I know an update is long overdue.
On this day last year, after picking up her oil from a dispensary, we went straight to a coffee shop where I met up with other recently moved families. At the time I had no idea how those people would become so much like a family to me. The community here is truly second to none. We come from all over, all backgrounds and walks of life, but we have such an incredible shared experience in the lengths we have all gone to for our children.
So, to her progress…..The most important change that we have seen in Maddie over the year is in her seizure control. When we got here, a typical day had 80-100 seizures. It is pretty common for her to have seizure free days now. And I tend to rate her day as terrible now if she has 5 or more seizures. My perspective on what constitutes a bad day has completely changed. Sometimes I think the numbers can be a little deceiving because she used to have clusters which could contain 20 or more seizures all at once. Another way I look at it is that before moving here, between 20-50% of her awake time could be affected by seizures of some type. That was really terrible. Now, on a truly awful day about 5-10 minutes of her day is disrupted by seizures. That is a complete game changer. Though her brain may not be working exactly the way it is intended the rest of the time, the amount of time each day that can be devoted to learning and fun is increased exponentially.
That brings me to the next important change: learning. I have said it over and over again, but this precious kiddo has really not learned anything and retained it for long since she was TWO years old. There have been times where she seemed to learn new skills and concepts depending on seizure control. But more often than not, she traded a new skill for the loss of an old one. Or she would take a few steps forward and then lose all the gains the next time her seizure control worsened. That has all changed now. It has been an entire year and her learning has been constant. She continues to make steps forward in all areas; they may be slow, but we are moving forward. Her ABA therapists are astounded at her progress and joke that they can’t come up with new targets for her fast enough. She can almost identify every letter of the alphabet now. We are starting on numbers. She knows her shapes and colors. We think next year we will be working on sight words. Which will mean our child may read someday. READ. These are things that just weren’t in our vocabulary before Charlottes Web. These are things I was afraid to hope for.
Next big change: this kiddo is just SO much more aware of her surroundings and comfortable in them. She is a happier kiddo. She understands so much more of what we say and spends a lot less time each day being frustrated. She can’t always tell us what she is feeling or thinking, but it is clear she understands so much more about what is going around her, and it is truly amazing to see. We are able to go out in public much more. We can make it through three errands in a row at times without major meltdowns and seizures. This amounts to a drastic improvement in quality of life for both of us.
We have been able to reduce one of her seizure meds, Clobazam, a benzodiazepine which has had terrible side effects for her, by 80%. We are still weaning and if all goes well she will be off of it in March. The wean has been long, but I am very conservative and slow with the wean because change is always tough on her. Before CW, anytime we tried to wean, she had such a horrible increase in seizures that we ended up going back up to the previous dose. We had unsuccessfully tried to wean this med on three different occasions. This will be monumental if she can get off of it and have better seizure control at the end. Just this last week, as we have gotten down to 5 mg, we are starting to hear more multi-syllable and word combinations. It is exciting. The last part of the wean is definitely hardest so we hope it keeps going as smoothly as it has.
We have also been able to reduce her reflux meds by 50% and remove the med she used to take for constipation since starting Charlotte’s Web. Her blood counts are the healthiest they have ever looked since completion of her treatment for leukemia.
We are just so incredibly grateful to have had the option to move here and give her this oil. And we are extremely grateful to the people who make it for her (The Stanley Brothers) and those who educate others on it’s benefits and who are conducting research on how best to use it (Realm of Caring).
If you are looking for somewhere to make a charitable donation at the end of the year, or were planning to get me a Christmas gift (I don’t need anything!), PLEASE consider donating to the Realm of Caring here. Just this week, they have moved into their first real office, at the same time that the Stanley Brothers are getting Charlotte’s Web to thousands of families on the waitlist, and it is a HUGE undertaking. I truly feel honored to be involved with the Realm of Caring during this time and be a part of something this special.
On this, our one year Charlotte’s Web anniversary, many parents will be sharing pictures of their kids’ first doses. I hope and pray they will see the same kind of magic we have seen over their first year.
Not the best pic – her first dose happened on the couch in our hotel
Maddie's Marathon 