If all goes as planned, Julia will start medical marijuana on Monday.
Julia the Flower Girl |
What a year it has been!
So many things have happened...
We have gained new friends as a result of choosing this path.
Our story has been widely shared.
We have been praised and we have been critiqued.
We have been called trail blazers and we have been called child abusers.
We have become advocates, we have seen laws pass, we have felt attitudes shift and we have watched some of our medical refugee friend's return to their home states!
In 12 short months we have witnessed progress!
But on a more personal level, the main question people have about this past year is:
Has it worked for Jules?
And the answer is yes! Thank the Lord, yes! It has worked, it IS working!!!
Julia and her new buddy Macaroni |
And here is what I mean by working:
First: Medical marijuana (some call it CBD oil, Julia's exact oil is called Haleigh's Hope and has both CBD and THC in it), has provided Julia with seizure control!
This is the main point - right? To keep those *bleeping* seizures away. And so for this main, most important purpose, it has absolutely worked!
We had a few bumps in the road, especially early on as we worked to find the correct dosage. One of the side effects of this medicine has been an increase in appetite, so Julia gained weight faster this year than she ever has before. There were a couple of times when we got behind in her dosing due to not realizing how much weight she had gained. When this happened she did have a few seizures, but once we adjusted the dosage we gained back seizure control. We also still see seizures when she is sick or getting sick, (that happened earlier this week in fact) - but seizures when she is sick is to be somewhat expected. Overall though, when the dose is right and she isn't sick, we are not seeing seizures - amazing!
Julia took her last dose of Keppra back in March, so for 11 months now she has only been taking medical marijuana. This in and of itself is incredible because she had been on Keppra and a cocktail of 13 other pharmaceuticals since she was a tiny baby.
Getting Julia off of Keppra was part of the reason we chose this journey - we were concerned about what years of taking pharmaceuticals was doing to her little system, we suspected Keppra specifically was causing her to experience extreme agitation, rages and an overall sense of discomfort in her own skin. We wanted to see what she was like if she was not on that medication - and now we have!
My opinion is that this developmental jump is the result of being off of Keppra more than being directly caused by marijuana. So, just to connect the dots, being on marijuana allowed her to get off Keppra which has then allowed her to flourish developmentally because she is no longer as agitated, distressed and distracted by the side effects of Keppra.
Again, this is not scientific, this is just my best guess about these changes - Julia is non-verbal and cannot tell me exactly how she feels, but through observation - mine, my husband's, family members and other people who know her well - we all agree she is a changed little lady. She is and always has been our fabulous little Jules, but we just feel like she is MORE Julia now, more her true self. A calmer Julia, a happier Julia, a Julia who can tolerate new situations and different stimuli so much more than she used to be able to. A Julia who simply yet miraculously seems more comfortable in her own skin.
And as a result of feeling better, Julia did a ton of new things this year: she wore sunglasses! She went on play dates and actually had fun. She held on to the rope of a tire swing. She let me clean her ears with a Q-tip and trim her nails with clippers without either of us crying. She started drinking out of a new kind of cup after using a baby bottle for 8 years. She repeatedly found the letter "J" on her toy laptop - "J for Julia!" She let us give her hugs and kisses more often than before. She lets me hold her hand, and she touches soft things which used to seem unbearable. She pets her puppy, Macaroni. She learned how to make her horse "trot" in therapy. She made up her own funny game with my dad where she carries a pillow to him and he says, "Oh thank you Julia, you brought me a pillow, I needed a pillow," and then she promptly throws the pillow as far away from him as she can and starts cracking up... She is quite the tease!!!
She started making noises again this year with her sweet little voice and even initiates a little conversation with us of "Hmm, Hmm, Hmm, Ha-Ha-Ha!"
And this winter for the first time ever, she played in the snow because she was finally able to tolerate wearing a hat and mittens!!! My heart could barely hold all of my happiness.
Hat, sunglasses and mittens. Boom! |
So has it worked? Yes! It has worked for Julia, for now.
Will it work forever? Probably not.
I don't say that to be a downer, it is just reality. Staying away forever is not typically the way seizures work for kids like Julia. Seizures, for kids like Julia, keep finding a way back. I've said this before and I'll say it again - in the battle against epilepsy you have to have a deep bench.
As much as we all would love a miracle drug that will keep these seizures away forever, it's more realistic that in Julia's lifetime we will need multiple miracle drugs - one after another after another - to keep fighting off these relentless seizures and give our girl a chance.
So the reason we share our story is not simply to promote marijuana - although of course that is a big part of it - but no, we share our story in order to advocate for MORE TREATMENT OPTIONS and access to all treatment options!!!! We believe everyone in this fight against epilepsy should have access to marijuana. We also hope and pray for more treatments to be discovered. We hope researchers keep researching, we hope pharmaceutical companies keep testing and developing new drugs, we hope tech companies continue improving technology related to seizures, and we hope media outlets increase sharing stories like ours to raise more awareness about epilepsy.
Our fight is not for marijuana, our fight is for the life of our child.
My prayer as we continue to share our story to anyone who will listen is that minds will keep opening, attitudes will keep changing - and people will learn to be more frightened by the word SEIZURE than they are by the word MARIJUANA. And that will lead to lives being saved.
Julia and Scooter |
#marijuanaismedicine #parentsforpot #haleighshope #bornwithapossibility