RoC Golf Tourney 2015

Since moving to Colorado, I have been lucky enough to find myself in amazing situations that I would never have imagined. One such event occurred Friday. Because of how well Maddie is doing, I had the opportunity to co-chair the annual Realm of Caring Golf Tournament.

For weeks prior, I have been stressing about the details of it. I stressed over far too many details even the day of. But thankfully, there were people there to capture the event so that I could play it back in my head and be grateful to have been a part of it.

The entire day was amazing. Moments that were most memorable to me were getting to chat with true cannabis pioneer, Alice O’Leary-Randall, and Daniel Wiskow, a man from California who is only recently seizure free since starting Charlotte’s Web. Daniel traveled to Colorado just to visit Realm of Caring to share his gratitude. He was a last minute addition, and I know that it was absolutely meant to be, as so many of us were inspired by his presence at the event.

 

We sponsored a hole in honor of Maddie. We’d love if you would support the Realm of Caring in honor of her too. You can do so by clicking here. Without this amazing organization, she would not be experiencing the enormous changes that amaze us daily. Here she is at dinner tonight, wild and crazy!

 

 

I want to thank all who have given so generously in support of Maddie and the Realm of Caring. Big thanks to Brandon who remembered to tell others that we were raising funds when I was busy working on the tournament. Thanks especially to my mom, who flew out here to hang with Maddie so that I could concentrate on the event. And thanks to Nichole Montanez of Face of Cannabis for capturing so many beautiful photos of the event.

 

Love to everyone!

Little Things

I definitely need to update more, but we are just busy here in Colorado living our lives. It is amazing how we can simply do that now, and truly participate in our community, now that Maddie is on Charlotte’s Web. There are so many neat things happening with her. Many of them are seemingly small, but when you put them all together, it really adds up to an amazing difference in her quality of life.

First Pedicure (Attempt)

Here are a few things that have happened recently:

Maddie has started asking for her medicine when she first wakes up in the morning. This is a tough seizure time for her, as it is for many kids, just upon waking. But now she will say “mememin” (medicine) first thing and take it easily. Who knows if it’s because she knows her oil helps her not seize or if it is just knowing her routine now? Doesn’t matter to me, it is definitely an improvement in cognition for her. She is sick right now and has a fever, and for the first time in years, I don’t have to wrestle her down to give her Tylenol or Advil. She takes it willingly as long as I tell her that it is going to make her feel better.

 

We were baking cookies for her and I was multitasking with Maddie on my hip. The timer had already gone off and I had silenced it but decided they needed a minute longer. So I got distracted again, messaging with a friend. I looked up and said , “Maddie, what was I doing?” and she said “cookie” and pointed to the oven. Yes, it was probably because she was focused on the cookies the whole time, but being able to appropriately reply to my question and remind me what she needed is a huge step for her.

 

When Maddie is in the car, she has a huge assortment of toys and books to play with. Favorites are the iPad and a toy computer. Sometimes these inadvertently get turned off or on the wrong app. Which used to mean they would get thrown out of her reach. But now, she will say a phrase which is really close to “Fix It” and reach out to hand it to me.

 

Little things really make all the difference. 

 

On a related note, I am fundraising now for the Realm of Caring. Our current crowdfunding campaign, Raise the Realm, is aimed at expanding the diagnoses that they can study cannabinoid use in. This campaign will also help reduce the cost of Charlotte’s Web for some deserving patients. The Realm of Caring already began studying use of CBD for epilepsy in its IRB approved Observational Research Registry at the end of last year. Funds being raised now will allow them to study cannabinoid effects on cancer, MS, ALS, and Autism. Based on the amazing results we have seen in Maddie, I can’t help but believe that there are many other conditions which will benefit from CBD and other cannabinoids. We certainly see enormous neurological benefit in her and look forward to seeing how it can benefit others. Please, if you can, donate to this fantastic cause and share it with others!

 

Here is the link to donate!

 

Between now and March 4th, anyone donating $50 or more will be entered to win a pair of  VIP tickets to 2015 Bonnaroo. Do it! Thank you!

 

Her best year yet

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.

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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.

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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.

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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).

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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

Not the best pic – her first dose happened on the couch in our hotel

Quick request

Hello all! I know I owe you an update and it will be coming soon. In the meantime, please follow the link and ask your Congressman to support this Federal bill. Thanks!

If you click on this link and follow the instructions, it shares my letter with your member of Congress:
https://www.popvox.com/bills/us/113/hr5226/comment/1729891

If you would be willing to create your own comment for why you support the bill (this is preferred!) follow this link:
https://www.popvox.com/bills/us/113/hr5226

Exciting things happening in NC

I know, I know……it’s been awhile.

 

Life out here in Colorado has been busy for a whole host of reasons. Most importantly, I’ve been spending every spare minute trying to get Maddie’s medicine legalized in NC. The fantastic part: we are actually getting somewhere. On Thursday, HB 1220 passed the NC House 111-2! Only two days prior to that, we were concerned the Bill might not even get heard this session.

 

We enjoy Colorado Springs. It is a beautiful place. We joined a pool along with our friends, fellow North Carolinians, the Morleys, who moved here for their daughter Mia to be treated with Charlotte’s Web. We spend as much time as we can there, but it just isn’t the same. Maddie loves the beach. I can’t help looking back at pictures of her from her last summer.

 

Happy to be in the water even in the crazy cool weather

Happy to be in the water even in the crazy cool weather

Precious girl at bedtime

Precious girl at bedtime

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Those are all from last summer at Figure Eight. Even though we were getting ready for brain surgery, we love our time at the beach.

 

 

A few more, from after her surgery, when her incision has healed enough that we could allow her in the sand and water.

 

This is the thing. This medicine works. I will stay here forever so that she can continue this treatment. But we SHOULD NOT have to. This is not something people need to be afraid of, it is not something to be threatened by. Our sweet girl has 80% less seizures per day on average despite reducing one of her seizure meds by 40%. She is learning so much. It isn’t easy or fast, but she is actually maintaining her new skills for the first time since she was two. When she learns something, it sticks. That has not happened for five years. Unless you have seen it in your own child you cannot imagine how hard it is to watch them have to re-learn the same things over and over and over again. Never knowing if we can ever get past the simplest concepts.

 

Maddie deserves to get to live at home with her Dad. We miss Brandon. We miss him so much. He was here last weekend for the first time in two and a half months and those 4 days were amazing. But our kiddo deserves better than that. She has been through so much. She should be able to live at home and use the medicine she needs.

 

If you agree that she should be able to live at home in NC and still use the CBD oil which has so greatly reduced her seizures and helped her begin to develop again, if you live in (or have family in) North Carolina, we would love for you to email your NC Senator. We are extremely hopeful that the Senate will take up our bill and pass it though the Senate with the same type of support that we saw in the House. But we have been warned that our short legislative session for 2014 is about to draw to a close and that they may want to wait and address this in January.

 

To find your NC Senator, click on this link, scroll down to the second map and enter your address. Once your district pulls up, click on the link to that seat’s page and your Senator’s email will be right there. Please shoot them a quick, polite email about why you support HB1220. It can be something as simple as, “I have followed Maddie Gorman’s story for a long time and I hope that you’ll allow her to receive her CBD oil treatment here in NC”. If you want more guidance as to how to write the email, comment below with your email. I won’t publish it and will just send you a template email.

6/22 Edited to add: For those of y’all not already familiar with our advocacy in NC and the bill, here it is. This is NOT a medical marijuana bill, it simply allows for a non-psychoactive oil extract to be used for intractable epilepsy, when recommended by your Neurologist.

 

Thanks for your support and for caring about our sweet girl.

Love to everyone,

Liz, Brandon, and Maddie

 

 

February

Another five weeks has passed, and it has been another month that makes us feel extremely confident in our decision to make the move to Colorado for this treatment for Maddie. Since our last update, we have changed up meds and dosing a bit and we are still seeing similar seizure improvement to what I reported in our last update. The reason we are so pleased is that since starting Charlotte’s Web, we have weaned her Clobazam, an extremely strong and addictive seizure medication, by 20%. There were some upticks in seizure activity with each drop,  but after a break from the wean, she is back to a fairly consistent daily seizure count which is at least 50% better than when we got here. We had tried and failed at weaning Clobazam for the last two and a half years, each time with seizures becoming very dangerous after just a tiny drop. So this is progress I am extremely pleased with. We hope to wean this pharmaceutical completely, but that will take us awhile. We are trying not to make her tolerate med changes constantly, so it will be slow.

Her development is continuing too. She is so much more alert and is just comprehending more.  It is amazing to see. It has been extremely slow and frustrating trying to set up all of her services/therapies here in CO. But this week, she will officially begin both ABA therapy and school (still homebound). I am confident once she is back in a routine of therapy and school that we will begin to see even more amazing progress.

I am still working HARD on trying to get this amazing medicine legalized in NC so that all of the kids in NC have access to it without having to uproot their whole families to give it a shot. If you haven’t seen, we’ve been on the news quite a bit. Here are the big clips:

WRAL  – Raleigh 

WBTV  – Charlotte 

Media attention helps, but we still need the legislators to really begin to listen and take action. I think exciting developments are coming, and I will definitely share them with you here when it is certain. I’ll be asking y’all to write letters asking for your local legislators to support us and our bill when that time comes. I am very hopeful that this issue will be addressed in the upcoming legislative short session in NC.

In other news, Brandon was out for a visit last weekend and we actually got to have a ski vacation. It was a bit different than in the old days when we used to come to Colorado and ski, but he got in a full day of snowboarding at Vail and I skied for the first time in 15 years at Beaver Creek. It was so much fun. We hope to do it again soon, and this time we’ll have a Maddie-sitter (my mom) along so that we can actually spend the day on the mountain together. We are super thankful to my aunt Linda and uncle Mac for opening up their home to us and for a fun visit with them and their boys. As much as I’d like to legally be able to go home, this state is magical and I see why so many people love calling it home.

The One Month (and a little more) update

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Maddie and I moved to Colorado Springs, Colorado on December 19th. The background that is integral to this update is that when we came here, her seizures had been getting worse rapidly since Nov 28th, Thanksgiving Day. Though they had been relatively well controlled since her brain surgery in July, in a three day span, she began having two dangerous seizure types that we had not seen since pre-brain surgery. We decided as a family that, while it was awful to move just prior to Christmas, we would not sit idly by as they continued to get worse this time.

We received news that she would come off of the waitlist for Charlotte’s Web and that they would have medicine available for her sometime mid-December. So we put the wheels in motion and got ourselves here and she began treatment on December 20th. There is a ton to tell about the move and settling in and the time we spent out here with Brandon and my mom, Bea, as it all unfolded. But I’m going to try to limit this to what we are experiencing so far on this new treatment. A lot of this is going to mainly make sense to other seizure parents, but its important to me that I share this and put it down on “paper” as we go.

Maddie is still on a tiny dose. Today, at five weeks in, she is still only on 1 mg per pound of her body weight of Charlotte’s Web, or high Cannabidiol(CBD) oil. I have been extremely cautious and slow titrating up because Maddie tends to be super sensitive to med changes. She has experienced a few side effects as we have increased her dose, but they are almost identical to rough patches we have gone through when we have increased one of her current seizure meds, Clobazam, and so we actually think that the CBD may be increasing her Clobazam level (and thus causing those previously seen side effects). It has been documented that CBD is metabolized on the same pathway that Clobazam is, and can actually block its metabolism, thus raising the level of that drug in the blood. We had labs drawn before we left NC to check her levels and we have repeated them here, and they do in fact show that her Clobazam level has increased.

I guess the important takeaway here is that the ONLY negative side effects we are seeing are things we have seen before and are most likely caused by the increasing serum levels of her FDA approved seizure med, and not by the CBD oil on its own. Depending on how her levels run as we continue to increase the CBD and depending on what her Neurologists think of the rising Clobazam levels, this is a fixable problem – we can slowly reduce her Clobazam and hope it does not mess with seizure control too much.

The side effects I’m describing are periods of extreme frustration, agitation, irritability that occur for just a few hours a day fairly soon after her morning dose of seizure meds. They do not happen every day and mainly occur right after I raise her CBD dose. I have already reduced their severity significantly by spreading her doses of CBD and Clobazam further apart.

That is the ONLY negative thing we have seen out of this treatment so far.

So onto the important stuff: I don’t think I can put a perfect quantitative measure on exactly how much her seizures have improved yet. My data shows great improvement some days and only moderate improvement on others. But given that things were getting worse when she started treatment and we cannot really say that she had a true baseline that we can now compare with, I’d say that the improvement we are seeing is quite meaningful. When we left Raleigh, her days were averaging between 10 and 100 seizure events of varying intensities per day. Since she started treatment, I don’t think she has ever had more than 60 seizure events per day. Some days are really magnificent, like today, where she really only had 4 or 5 seizures. So despite being nowhere near a therapeutic dose, I think we may already be seeing an average of about a 50% seizure improvement. Crazy.

Part of the difficulty in quantifying it all is that seizures have changed a little bit. One of the prevalent types from before starting, clusters of myoclonic jerks or head drops, have almost entirely gone away. We do now see some eye deviations (which used to lead into those, and I have to count them, but they are waaaaaay milder and less significant. So that keeps the count up some days, but they are much less severe. I’d have to come up with some weird way to weight the severity of seizures to truly reflect all the improvement we’ve seen.

While the seizure improvement is amazing, the thing that truly blows me away is her cognitive improvement. When I describe individual changes, they may sound minor but for a child who has had very little development and mainly regression for the past 5 years, these little things mean the world.

-She can purposely play with toys that she never could in the past. She understands the cause and effect of them, and has the fine motor skills to place items into them repeatedly with very few mistakes.  She also has strength in her fingers that she never had before to push buttons and can does so repeatedly at the appropriate time.

-She can color/draw better than in years. She holds the crayon properly most of them time with no correction from us and has the strength and skill to actually make the marks she intends to.

-She is able to turn the pages in a normal children’s book. Up until now, she has always had to use board books. She couldn’t manage to turn the thin paper pages herself and was usually frustrated and just tried to rip them out.

-She is more verbal. We hear more sounds everyday and I really hope to be able to say we are hearing sentence approximations someday soon

-She is SO much more alert and aware. She loves the Wiggles and always has. I am sure she knows every word to every song (I do!)  but just can’t say them. When she watches them now, she makes verbal approximations for words they sing or the motion (clapping) they describe almost immediately when she hears them. Some happen even before because she has them memorized and wants me to know she knows what’s coming.

I think that’s most of it. Some of those items are things that she has at times been able to do in the past, but never all at once. The improvement in her fine motor skills (dexterity with her fingers particularly) in this 5 weeks is greater than any previous year out of the 5 years she’s been having daily seizures. She is just SO much more clear. Some of you reading this probably didn’t know just how bad it had gotten over the past few years. I don’t usually like to dwell on all the things she has lost. But I am truly overjoyed to see some of these skills coming back with ease. In the past, we have worked tirelessly to improve in these areas, and to see improvement like this with the ADDITION of a medicine is mind-blowing. Most seizure meds are cognitively dulling, and in our experience, we have always had to trade development for seizure improvement. It has been very rare and fleeting to find both at the same time. Please pray that it continues!

A few other fun new things: She has decided to chew again. She was on intensive feeding therapy post brain surgery because she quit chewing and really stopped liking to eat. She is eating again, willingly most of the time, and she started chewing her food just like she used to. I have no idea if that is because of Charlotte’s Web; I know, I know, she could have the munchies. Except that her batch of CBD oil has such a tiny amount of THC (the part that cause the psychoactive effects, and presumably the munchies) that it wasn’t really measurable.

Take a look:

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She also loves to give me kisses all the time now. She is just sweeter. She still has some challenging behaviors (most of which started post-brain surgery) but many of them are even reduced. She was pulling out her hair by the clump when frustrated until a couple of weeks ago. That has calmed a lot.

Having watched the effects of this treatment on our precious child for over a month, I honestly do not know how to describe how LUDICROUS it is that this treatment is illegal in most of the country. It is a liquid that I give her orally in a medicine dropper, like Tylenol. It has caused less side effects than any anti-epileptic drug approved by the FDA that I have ever given her. And she’s seen really noticeable improvements cognitively in a short period of time, and improvements in seizure control that we have never seen without having concerning side effects.

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I did not come here thinking this was a miracle treatment. I came her thinking it was a treatment that would work for some, but not all. And I still think that is true. But in comparison to the 14 other treatments she has tried over the years, this DOES feel like a miracle for us. Even if the seizures do not improve more, a treatment that can make her so much more alert and aware and to allow her to develop is a miracle for our family.

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My visit to the Stanley Grow. Pretty amazing what this plant can do