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