Let me just start by saying, epilepsy sucks. I don’t think I could ever describe how painful it is to see your child have seizures every single day. How stomach turning it is to pump them full of strong and serious medications day in and day out. Medications that haven’t even been able to fully control their epilepsy. Yet this is the fate that many epilepsy parents face.
CBD oil has been known to be somewhat of a miracle cure for many epileptic patients. There are tons of variations and ways to administer it. Some find seizure freedom with their very first dose, some after months of trial and error, and some not at all. We have used CBD with Madison a while back, see post here, but decided to try again with a strain that has more THC included.
Because marijuana is illegal in NJ we previously only had access to strains of CBD with almost no THC, which is the psychoactive component of the cannabis plant. Now that we have Madison’s medical marijuana card, we can visit a dispensary and purchase strains with a higher THC concentration.
When it comes to CBD and it’s effectiveness at seizure control, high CBD strains are what seems to help. There isn’t any research showing that THC is useful in controlling seizures, but some patients have seen a better efficacy with the two compounds working together. Madison’s neurologist has seen that while high CBD strains are still the most effective for treating epilepsy, strains with a little more THC than allowed to purchase over the internet have also had a good success rate with his patients. Because we’ve already tried oils with no THC, we thought it was time to try one with just a little bit more.
So about 3 weeks ago we visited the dispensary for the first time, and purchased our first 1:1 strain of CBD. Previously we had tried 20:1 and 15:1 compounds, so this new strain has almost equal parts CBD to THC. The trickiest part of CBD is that there isn’t really a protocol in place for dosing. Because there isn’t much research on CBD yet, neurologists can’t really advise on a titration schedule. It leaves so much freedom which is both good and bad. Good that we have the control and can adjust as we see fit, but the freedom also makes it extremely difficult to find the exact strain and dose needed.
Madison’s neurologist told me the strains he has seen the most success with, but unfortunately hasn’t really been able to guide us with dosing. Rule of thumb with CBD is to always start low and slow, and so that’s what we have been doing. While of course I was hoping we would be the lucky few that saw her seizures stop with the first dose, we haven’t been. In fact almost the opposite. We had gotten Madison’s seizures down to small jerks, but after starting CBD they are now presenting as clusters of spasms like they used to.
What makes the situation even trickier is that although her seizures seem to be presenting a bit worse, her clarity has greatly improved. When she’s awake she looks so much clearer, has been more vocal, using her hands and fingers more, her tone has improved, the list goes on. We’re seeing benefits, but we’re also now watching her have more seizures than she was.
So what do we do? Well, unfortunately we don’t know. When you talk to the epilepsy world about CBD there are so many advocates for the wonders it has done. And many will tell you, it can take months of trial and error before you figure out what works best for your little one. Many will also tell you that you see better effects when off pharmaceuticals, but that’s something we just can’t do, not yet anyway.
There are so many questions in my head right now: how long do we keep her on this strain? Do we increase the dose? If seizures seem worse would that be crazy to increase the dose? Do we try a new strain? Do we dose 2x a day instead of 3? What about 4x? Do we lower one of her AEDs to see if things shake out better? I simply don’t know, and because research on CBD has been limited and because it works differently for everyone, there are few guidelines for me to follow.
To top it all off, Madison has still been teething and her sodium is still on the higher side, so she’s been extremely irritable and not sleeping well. There’s always so many moving pieces in play for her, it’s hard to pinpoint exactly what’s bothering her. It’s heartbreaking to see your baby so upset all the time. At this point I just want her to wake up and be at peace, be happy, & be comforted. She deserves so much more than this life has given her and I pray she gets her break soon.
We’re not giving up on CBD because we truly have seen such an improvement cognitively with her. Now we really just need to figure out how to get better control of her seizures. I can’t imagine how much her development would pick up if her little brain wasn’t constantly going off. So if anyone reading this has any tips for strains or dosing, please let this mama know! There is of course the reality that CBD might not work for her, but because there are so many options available, I’m still hopeful we’ll find miss Madison’s lucky combo. Wish us luck!
Xo,
Kelly
