There is no longer any question....
CBD oil is helping!!
Our 12 year old daughter Awesome is 34 weeks into a trial of medical cannabis for intractable (aka drug resistant aka refractory) epilepsy.--and we are seeing some encouraging results.
We've seen a 90% reduction in the severity of Awesome's big seizures:
That medical cannabis in the form of CBD oil can lessen the severity of seizures was recently documented for the first time in a study at UAB. Children and adults with severe intractable epilepsy and frequent seizures trialed a concentrated pharmaceutical grade CBD and were carefully followed by researchers. 67% of subjects experienced a reduction in the severity of seizures. And in the same study, 68% of participants had a reduction in seizure frequency.
Awesome hasn't yet experienced a reduction in seizure frequency. We continue to hope that that might eventually happen. Time, we've been told, not dose, is of the essence with CBD. It's not uncommon to take months to see results. And things can continue to improve for at least up to twelve months. It's mode of action is totally different from that of AED's. It takes a lot of patience to trial CBD. While some get immediate positive, even miraculous results, the vast majority of those trialing CBD for seizures, do not. It takes weeks and months for most to see results. And so, lots of patience and perseverance.
The other positive effect we've seen already with CBD and with getting Awesome off all AED's (at her doctor's request) is a positive change in sleep, energy, and resilience. Awesome's going to sleep quicker and easier and sleeping better; she's sleeping two hours less each night, and waking earlier and more refreshed. This is an amazing change. Before CBD, while on AED's, Awesome was sleeping 10-11 hrs a night and waking groggy, grumpy, and tired. It was not uncommon for her to ask--even beg--to be allowed to go back to sleep after 11 hours of sleep. She had dark circles under her eyes. She looked like she felt. All tired out.
Now, once she's awake in the morning, Awesome also has more energy and resilience. Instead of sitting with her computer and headphones because that's all she has the energy to do, she's going outside and running around the yard, playing with her dogs. She's full of life, energy, and resilience. She once again has the energy to enjoy her childhood.
She's also back to being her very social self. Before, while on AED's, she often simply didn't have the energy or resilience to interact with other people outside the family. She retreated to a room by herself--often turning out the lights and putting on her headphones and on occasion, even crying--when we had guests and houseguests because she didn't have the energy or resilience to handle the interactions and the chaos that resulted from having others around. Now she is back to her old ways. When her young adult brothers were home over the holidays and all groups of friends were stopping by, Awesome was once again literally back in the midst of it all. She sat in the middle of the group, participated in all the board & card games, interacted, and enjoyed it all immensely. This is Awesome back to normal. When you're a child who spent the first decade of your life hanging out with your five older brothers' teenage friends as if you were one of them, you love hanging with the group. Participating is everything to you. It is the norm. And it is AMAZING to see her back to being herself again.
Those who know and love Awesome have noticed the difference in Awesome. It is striking. And something that people comment on.
It's also striking to her pediatrician--whom we just saw yesterday--who says that she seems like a different child from last year. She's gone from being quiet, tired, and retreating to being interactive and animated. This is the child we've always known and loved. An animated, high-energy, outgoing, and interactive child.
Getting to this point with CBD hasn't been easy. It's been a long road since starting CBD oil last summer (June 2016). Awesome had a really rough start. For the first several months we battled CBD/AED interactions. Both CBD and most AED's are metabolized in the same liver pathway. When you are taking both CBD and AED's, depending on exactly how your particular liver functions--and we all function differently depending on genetics--the two--CBD and AED's-- can vie for control of that P450 cytochrome pathway. Spacing CBD and AED doses at least 2-3 hrs apart helps avoid the worst drug interactions for most people. But for some (with some medications), that spacing is not enough--the drugs are destined to continue to vie for control of the pathway. When this happens, blood levels of the AED either increase or decrease. The result is sometimes drug toxicity--with increased seizures and increased side effects (with some AED's this can even be deadly). Other times, the result is falling blood levels of AED's--which also often cause more seizures, either because AED blood levels fall below therapeutic levels or because such sudden drops in blood levels can cause withdrawal seizures (AED blood levels are usually slowly decreased to avoid withdrawal seizures). But whatever the exact situation, when drug interactions occur between CBD and AED's, the result most often is simply more seizures and more intense AED side effects. This was the case with Awesome. For the first month or two her AED levels soared, with the result--because her AED was actually causing seizures, not preventing them--that she had increased seizures. After her epileptologist realized what was going on (her July VEEG showed seizure activity literally every few minutes despite--or should I say, because of--high blood levels of her AED) and had us start a wean of the AED, then her seizures increased because she was having withdrawal seizures. There was, for the first few months, no winning for Awesome on the seizure front.
After we were through all that came another AED trial--which caused its own problems and increased seizures of a different kind--and then, once it became apparent that we were dealing with another AED that increased seizures and brought its own special kind of worrisome side effects, we embarked on yet another AED wean--which again caused more withdrawal seizures.
In many ways we lost the months from June 2016 to October 2016. Awesome's brain was busy dealing with AED induced seizures and then AED induced withdrawal seizures. Whatever good CBD might have been doing, while it surfaced for awhile, was quickly lost again amidst all the turmoil and brain reactivity.
In mid-October we decided, as it may be, to wipe the slate clean in regard to CBD and start over again. We switched CBD brands from Charlotte's Web (CW) to Haleigh's Hope (HH). We did a "reboot" of 3 days--not giving any CBD oil for three days--and then started over again at the lowest dose of HH. We did this for several reasons, perhaps the strongest one of which has to do with Awesome seeming to have special difficulty clearing toxins from her system. HH is supposed to be a "cleaner" oil with less residual pesticides and contaminants than CW. That's because HH utilizes carbon dioxide as a solvent in the extraction process (the process by which plant material is changed into a form that becomes medicine), whereas CW uses ethanol--inevitably some of that ethanol is left behind as a contaminant in the oil. (CW, we heard, right after we switched has now come with an oil that also utilizes CO2 as a solvent). HH is a golden amber color, whereas CW is much a much darker muddy black-green color. This is NOT to say that CW oil is unsafe. Not at all. The residual contaminants are well-within FDA standards and frankly, you're probably getting higher levels of the same contaminants in produce you buy at your local grocery store. However, knowing how sensitive Awesome seems to be, we wanted the purest product possible, the one with the least contaminants. Beyond that, CW and HH are made from different strains of low THC cannabis and so their terpene profiles are different. While CW works like a charm for many; there are those for whom it doesn't, and those for whom it hasn't worked, often find that HH works better for their child. Additionally, HH is available in different CBD/THC ratios. CW is not. Since legally we're allowed to possess and use higher THC content oil, we thought that switching to the brand in which that higher THC content oil was available for legal shipping and legal use, was prudent--in case we needed it. I would never dis Charlotte's Web or Palmetto Harmony's products. We are very grateful that they exist and that we have choices.... Who's to say we won't go back to CW one day or try Palmetto Harmony one day? They are all three good products... Anyway, this discussion has been a long diversion.
The bottom line is this...in mid October we switched to Haleigh's Hope CBD oil. Right after Awesome had a big seizure with which we used the rescue med Diastat (affording us a few days of lower seizure counts as a residual effect), we did a "reboot." Awesome was given no CBD oil for three days. Then we started over again at the lowest dose of Haleigh's Hope--the dose for sensitive children.
Shortly thereafter, after the worst of her last AED wean was over, we saw the first big seizure that ended on its own again (we'd seen this early on with CW too, before all the craziness of AED weans and additional AED trials). Since then, all her big seizures have been short and have ended on their own.
There's a lot more to the story of the last several months, but that's all I'll say in this post. Perhaps I'll explain some of the rest of the story later in other posts....or not. We'll see.
Awesome is now on no conventional AED's at all--by her epileptologist's orders--and we are all about the business, finally, of trialing Haleigh's Hope 20:1 Hemp Oil at various dosages. Awesome is the happiest and most energetic we've seen her in a long time. She exudes well-being. Of course she is having far more seizures than we'd like her to be having, and we're still hopeful that CBD can eventually reduce her seizure count as we experiment with dosages and ratios. But for the first time ever we actually have some positive seizure control results. Not having to worry about every big seizure as a life-threatening emergency, is a huge weight off our shoulders. And while we're still hoping that one day we will find that Holy Grail of seizure freedom, we are in the meantime, in a place where Awesome can live more happily and healthily. And enjoy life. And her childhood--as she ought to be doing.
Thank you, CBD (medical cannabis) and all who have worked to make it possible for Awesome and others to access this health- and life-saving substance. And who work hard to continue to make it available I pray that one day we will be able to access more cannabis products, including THC and THCa (the non-psychoactive form of THC). Some kids--and Awesome may turn out to be one of them--need some THC or THCa to really decrease seizure frequency.
And in case anyone is wondering....the medical cannabis that Awesome uses now--is non-psychoactive. It is less than 0.3% THC. And when combined with CBD the THC has even less psychoactive properties... Frankly, many conventional AED's--and certainly her rescue meds--and even some over-the-counter-medications are more psychoactive. There is nothing psycho-active about CBD. (And FWIW, the photos posted here have nothing whatsoever to do with medical cannabis. They're just photos of various common plants Awesome's older brother took years ago. Posted simply for visual interest.)
CBD oil is helping!!
Our 12 year old daughter Awesome is 34 weeks into a trial of medical cannabis for intractable (aka drug resistant aka refractory) epilepsy.--and we are seeing some encouraging results.
We've seen a 90% reduction in the severity of Awesome's big seizures:
- Her big seizures--which have never ended on their own--are now ending on their own.
- The average length of her big seizures has gone from 10+ minutes to 1 minute.
- The seizures themselves are milder.
- Post-ictal (after seizure) impairments have gone from serious and severe to mild, and they last for a few minutes instead of several hours.
- Post-ictal sleep times--a measure of seizure severity--have gone from 30-45 minutes to a 0-30 minutes.
- Acute post-ictal symptom recovery times have gone from an average of about 360 minutes (3 hrs) down to 30-60 minutes.
- Instead of losing the entire rest of the day to exhaustion, malaise, serious headache, etc., Awesome is now good-to-go after an hour--the rest of her day is a normal day with normal energy.
That medical cannabis in the form of CBD oil can lessen the severity of seizures was recently documented for the first time in a study at UAB. Children and adults with severe intractable epilepsy and frequent seizures trialed a concentrated pharmaceutical grade CBD and were carefully followed by researchers. 67% of subjects experienced a reduction in the severity of seizures. And in the same study, 68% of participants had a reduction in seizure frequency. Awesome hasn't yet experienced a reduction in seizure frequency. We continue to hope that that might eventually happen. Time, we've been told, not dose, is of the essence with CBD. It's not uncommon to take months to see results. And things can continue to improve for at least up to twelve months. It's mode of action is totally different from that of AED's. It takes a lot of patience to trial CBD. While some get immediate positive, even miraculous results, the vast majority of those trialing CBD for seizures, do not. It takes weeks and months for most to see results. And so, lots of patience and perseverance.
The other positive effect we've seen already with CBD and with getting Awesome off all AED's (at her doctor's request) is a positive change in sleep, energy, and resilience. Awesome's going to sleep quicker and easier and sleeping better; she's sleeping two hours less each night, and waking earlier and more refreshed. This is an amazing change. Before CBD, while on AED's, Awesome was sleeping 10-11 hrs a night and waking groggy, grumpy, and tired. It was not uncommon for her to ask--even beg--to be allowed to go back to sleep after 11 hours of sleep. She had dark circles under her eyes. She looked like she felt. All tired out.
Now, once she's awake in the morning, Awesome also has more energy and resilience. Instead of sitting with her computer and headphones because that's all she has the energy to do, she's going outside and running around the yard, playing with her dogs. She's full of life, energy, and resilience. She once again has the energy to enjoy her childhood.
She's also back to being her very social self. Before, while on AED's, she often simply didn't have the energy or resilience to interact with other people outside the family. She retreated to a room by herself--often turning out the lights and putting on her headphones and on occasion, even crying--when we had guests and houseguests because she didn't have the energy or resilience to handle the interactions and the chaos that resulted from having others around. Now she is back to her old ways. When her young adult brothers were home over the holidays and all groups of friends were stopping by, Awesome was once again literally back in the midst of it all. She sat in the middle of the group, participated in all the board & card games, interacted, and enjoyed it all immensely. This is Awesome back to normal. When you're a child who spent the first decade of your life hanging out with your five older brothers' teenage friends as if you were one of them, you love hanging with the group. Participating is everything to you. It is the norm. And it is AMAZING to see her back to being herself again.
It's also striking to her pediatrician--whom we just saw yesterday--who says that she seems like a different child from last year. She's gone from being quiet, tired, and retreating to being interactive and animated. This is the child we've always known and loved. An animated, high-energy, outgoing, and interactive child.
Getting to this point with CBD hasn't been easy. It's been a long road since starting CBD oil last summer (June 2016). Awesome had a really rough start. For the first several months we battled CBD/AED interactions. Both CBD and most AED's are metabolized in the same liver pathway. When you are taking both CBD and AED's, depending on exactly how your particular liver functions--and we all function differently depending on genetics--the two--CBD and AED's-- can vie for control of that P450 cytochrome pathway. Spacing CBD and AED doses at least 2-3 hrs apart helps avoid the worst drug interactions for most people. But for some (with some medications), that spacing is not enough--the drugs are destined to continue to vie for control of the pathway. When this happens, blood levels of the AED either increase or decrease. The result is sometimes drug toxicity--with increased seizures and increased side effects (with some AED's this can even be deadly). Other times, the result is falling blood levels of AED's--which also often cause more seizures, either because AED blood levels fall below therapeutic levels or because such sudden drops in blood levels can cause withdrawal seizures (AED blood levels are usually slowly decreased to avoid withdrawal seizures). But whatever the exact situation, when drug interactions occur between CBD and AED's, the result most often is simply more seizures and more intense AED side effects. This was the case with Awesome. For the first month or two her AED levels soared, with the result--because her AED was actually causing seizures, not preventing them--that she had increased seizures. After her epileptologist realized what was going on (her July VEEG showed seizure activity literally every few minutes despite--or should I say, because of--high blood levels of her AED) and had us start a wean of the AED, then her seizures increased because she was having withdrawal seizures. There was, for the first few months, no winning for Awesome on the seizure front.
After we were through all that came another AED trial--which caused its own problems and increased seizures of a different kind--and then, once it became apparent that we were dealing with another AED that increased seizures and brought its own special kind of worrisome side effects, we embarked on yet another AED wean--which again caused more withdrawal seizures.
In many ways we lost the months from June 2016 to October 2016. Awesome's brain was busy dealing with AED induced seizures and then AED induced withdrawal seizures. Whatever good CBD might have been doing, while it surfaced for awhile, was quickly lost again amidst all the turmoil and brain reactivity.
In mid-October we decided, as it may be, to wipe the slate clean in regard to CBD and start over again. We switched CBD brands from Charlotte's Web (CW) to Haleigh's Hope (HH). We did a "reboot" of 3 days--not giving any CBD oil for three days--and then started over again at the lowest dose of HH. We did this for several reasons, perhaps the strongest one of which has to do with Awesome seeming to have special difficulty clearing toxins from her system. HH is supposed to be a "cleaner" oil with less residual pesticides and contaminants than CW. That's because HH utilizes carbon dioxide as a solvent in the extraction process (the process by which plant material is changed into a form that becomes medicine), whereas CW uses ethanol--inevitably some of that ethanol is left behind as a contaminant in the oil. (CW, we heard, right after we switched has now come with an oil that also utilizes CO2 as a solvent). HH is a golden amber color, whereas CW is much a much darker muddy black-green color. This is NOT to say that CW oil is unsafe. Not at all. The residual contaminants are well-within FDA standards and frankly, you're probably getting higher levels of the same contaminants in produce you buy at your local grocery store. However, knowing how sensitive Awesome seems to be, we wanted the purest product possible, the one with the least contaminants. Beyond that, CW and HH are made from different strains of low THC cannabis and so their terpene profiles are different. While CW works like a charm for many; there are those for whom it doesn't, and those for whom it hasn't worked, often find that HH works better for their child. Additionally, HH is available in different CBD/THC ratios. CW is not. Since legally we're allowed to possess and use higher THC content oil, we thought that switching to the brand in which that higher THC content oil was available for legal shipping and legal use, was prudent--in case we needed it. I would never dis Charlotte's Web or Palmetto Harmony's products. We are very grateful that they exist and that we have choices.... Who's to say we won't go back to CW one day or try Palmetto Harmony one day? They are all three good products... Anyway, this discussion has been a long diversion.
The bottom line is this...in mid October we switched to Haleigh's Hope CBD oil. Right after Awesome had a big seizure with which we used the rescue med Diastat (affording us a few days of lower seizure counts as a residual effect), we did a "reboot." Awesome was given no CBD oil for three days. Then we started over again at the lowest dose of Haleigh's Hope--the dose for sensitive children.
Shortly thereafter, after the worst of her last AED wean was over, we saw the first big seizure that ended on its own again (we'd seen this early on with CW too, before all the craziness of AED weans and additional AED trials). Since then, all her big seizures have been short and have ended on their own.
There's a lot more to the story of the last several months, but that's all I'll say in this post. Perhaps I'll explain some of the rest of the story later in other posts....or not. We'll see.
Awesome is now on no conventional AED's at all--by her epileptologist's orders--and we are all about the business, finally, of trialing Haleigh's Hope 20:1 Hemp Oil at various dosages. Awesome is the happiest and most energetic we've seen her in a long time. She exudes well-being. Of course she is having far more seizures than we'd like her to be having, and we're still hopeful that CBD can eventually reduce her seizure count as we experiment with dosages and ratios. But for the first time ever we actually have some positive seizure control results. Not having to worry about every big seizure as a life-threatening emergency, is a huge weight off our shoulders. And while we're still hoping that one day we will find that Holy Grail of seizure freedom, we are in the meantime, in a place where Awesome can live more happily and healthily. And enjoy life. And her childhood--as she ought to be doing.
And in case anyone is wondering....the medical cannabis that Awesome uses now--is non-psychoactive. It is less than 0.3% THC. And when combined with CBD the THC has even less psychoactive properties... Frankly, many conventional AED's--and certainly her rescue meds--and even some over-the-counter-medications are more psychoactive. There is nothing psycho-active about CBD. (And FWIW, the photos posted here have nothing whatsoever to do with medical cannabis. They're just photos of various common plants Awesome's older brother took years ago. Posted simply for visual interest.)
All I can say is "Wow!" Soooo wonderful for you and her!! So happy for your whole family. That is amazing!
ReplyDeleteThanks, Joanne
ReplyDelete