Thursday, January 28, 2016

Medical Marijuana: A Year in Review

One year ago I shared a blog about Julia starting medical marijuana and wrote this line:
If all goes as planned, Julia will start medical marijuana on Monday.

Julia the Flower Girl
Well, all did go as planned and if all continues to go as planned Julia will hit her one year anniversary of taking medical marijuana on Monday.

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!

Second: Because medical marijuana worked for seizure control, Julia was able to wean off of all other medications.

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!

Third: Julia has had an incredible, incredible year developmentally!

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!
It's been a crazy, wonderful, blessed year - we have hardly been able to keep up with and keep track of all the good things happening for our girl. I've been both saddened to fully realize and amazed to observe how much change can come as the result of not being constantly distracted and distressed by sensory stress and overload.  She really had been dealing with a lot of negative side effects from those other drug, and now that she is feeling better because of marijuana, so many worlds have opened up to her in just one year.

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

Monday, January 25, 2016

Dear Julia, You Are Not the Problem

Dear Julia,

I read a post last night when I was trying to fall asleep written for parents like me, parents of extra special kids like you - and what I read really bothered me because it seemed to be saying that life is really really hard for people like me because of kiddos like you. I read it twice and then a third time to make sure I hadn't read it wrong or missed the point (I do that sometimes), but again and again and again what I heard most of all was the author saying how hard life is because of kids like you. 

And, well, that didn't sit too well with me babe, so I had to speak up - because while the author may have been speaking for himself, he absolutely, 100% does NOT speak for me. 

Yes, life can be stinkin' hard - but Jules, I pray you hear this one thing from me if nothing else - the hard in life is NEVER because of you.

You, my love, are never the problem. 

Neither are you the battle. 

You never cause me to feel embarrassed, defeated or done. Other parts of life do that for sure, probably a little too much lately, but never you. You are not my hard part, you are not a problem I endure.

Like most people, there are things in my life that sometimes make it hard for me to want to face the day... Some days my problems come in the form of work stuff: Meetings, deadlines, reports I don't want to write, and paperwork I'd rather not review.

Sometimes it's relationship stuff: A fight with your dad I don't want to apologize for, a misunderstanding with a friend that turned into a 6 month standoff, hurt feelings and unspoken resentments threatening to boil over in every direction. 

Sometimes it's the stuff in my own head that's been there for as long as I can remember: Insecurities, unfulfilled dreams, 5 extra pounds, repeated mistakes and the mocking voice on replay reminding me: "Still not good enough, still not good enough."  

And on many days, like this morning for example, the battle is with the stuff impacting you. The problems you have to deal with are also my problems. Seizures I can't make stop. Needs I can't meet because I can't understand what it is you need. Systems meant to help that actually feel more like a burden. Fears I'm missing something that might make life better for you, criticism and misunderstanding and hurtful actions from people who don't understand our lives. 

Those are my problems. Those are my hard things.  Those are the "unending battle" things, the "I feel defeated and embarrassed" things, the "I'm kind of at the end of my rope things."

You, Julia Anne, are none of those things. 
You are not my hardest thing. 
Not by a long shot. Not by the longest shot to the farthest galaxy.

And let's be honest, this is not because every single moment with you is blissful and easy and a walk in the park - no, this is because you and the hard things that sometimes happen with you are NOT the same thing.

Seizures are hard, but you are not seizures.
Tantrums are hard, but you are not a tantrum. 
Lack of communication is hard, but you are not refusing to communicate.
Judgement from others is hard, but you are not the one judging.

You, my precious daughter, are not the hard things. In fact, when I look at you the hard things get easier.

So while it is very true that life can be hard, and life can be lonely, and life can feel defeating at times and we all need to hear that we aren't alone and it's OK to feel down...  It is also true that everyone can feel these things, not just parents like me with kiddos like you. Being human is hard. Being alive means we have problems. No one person is the cause of our problems and you, Julia, are not the cause of mine. 

You, sweet girl, are a reason to figure out the hard things and deal with my problems. You are a driving force to be a better me.  You are the source of so much of my happiness and the reason for most of my pride. You've added to my life purpose, wonder and meaning. 

You are my good thing. 
My very best thing.

And if anyone ever claims to speak on my behalf and states otherwise, it is a lie.


Your grateful mom


Tuesday, January 19, 2016

How Not to Ask About My Child's Progress

Today we had an appointment with Julia's eye doctor whom we haven't seen in over a year.

I was excited to update her on all the positive changes and developments that have occurred since we last saw her.  It really has been such a great year for Jules.

"What's changed?" she asked and I began to tell her that since we switched medication a year ago the biggest positive side effect has been in Julia's sensory tolerance - she can handle so much more sensory input than before - she seems more comfortable in her own skin and that has opened up a ton of new opportunities for her!

The conversation went on:

Doctor: So tell me about her fine motor development.

Me: (with a big smile on my face) Well, she is touching so many more things than she used to, she will pick up small things with her fingers and she will let her hands touch a variety of textures that used to really bother her.

Doctor: Is she cutting?

Me: Cutting??    (I'm thinking to myself what is cutting?  I work in the mental health field so all I could think of was self-harming. Is she asking if Julia is self-harming?)

Doctor: Yes, cutting. Is she holding scissors and cutting paper on her own?

Me: Ummmm no. No, she's not doing anything like that. (Now I'm thinking to myself what in the world?? Where did cutting paper come from? Did you not hear anything I was just saying to you about what she is doing? Self-harming was a more realistic question than holding scissors and cutting paper.)   

Doctor: Oh, well is she holding markers or crayons and coloring?

(At this point I'm pretty sure my smiley face which had recently turned to a confused face now became a defeated face and my feelings of excitement started feeling more like embarrassment, had I oversold Julia's progress?)

Me: No, she's not holding markers and coloring, she doesn't really do anything like that. I guess when I said she was doing great I just meant for her - not, I guess, what you are thinking of.

(I felt like crying.)

Doctor: Oh I know that, I just needed to get a sense of what you meant by 'doing better.'

Me:  Nod my head. (But I was thinking there are about a hundred other ways to find out what I meant by 'doing better' that wouldn't involve making my positive update feel more like a disappointment.)


I realize this is not a huge deal, so for those of you already formulating your critique of me and my over-sensitivity, I'll save you the time - I get it, it is not the end of the world that Julia's doctor asked me questions in this way. It's just a little thing - but still a little thing that kind of stung. And sometimes we need to talk about little things. I left that appointment thinking there really does need to be a certain level of awareness and sensitivity when working with kids who have developmental delays and their parents. Their achievements and accomplishments look SO different than typical development, they can seem tiny in comparison to regular milestones, they can get lost in the land of normal - but for the kids and those of us who love them they are monumental, ginormous, incredible, amazing!!!! And so when asking about our kid's progress, I believe there are simple ways to do it that allows the provider to get the information he or she needs without making the parent or kid feel like they are a disappointment or their achievements aren't a big deal.

Instead of asking:
Is she doing _____?

What kinds of things is she doing?
What new things is she doing?
What does she like to do/play with/touch these days?

Questions can be specific to a body part (hands, fingers, eyes, etc...) or a therapeutic skill set (OT, PT, SLP) - but should NOT be specific to an actual activity or task (cutting, drawing, running, talking...). And open ended questions are almost always preferable to closed / yes or no questions. When you ask open ended questions we as parents get to compliment and brag on our child's accomplishments rather than giving attention to tasks currently beyond their ability. And even more importantly, if the child understands the conversation going on around them, questions asked in this way give him or her the opportunity to hear people talking about what he or she IS doing, not about what he or she is NOT doing.  I know which conversation I would prefer to hear.

It's a little thing, I know, but it does make a difference, and if there is one thing I've learned from being Julia's mom it's that little things matter quite a lot.

I'm so stinking proud of Julia and her amazing accomplishments - let's talk about those things!!!