Alert. Clear. Vocal. HAPPY. These are a few of the words I would use to describe Madison lately, and it’s been wonderful! What’s changed? Well not much, aside from starting a new CBD and weaning one of her seizure meds a few months ago. We’ve also finally figured out a good combo for keeping her constipation under control, and her teething spell has just about ended. Okay, so maybe a few things have changed! Regardless, she’s been a new child lately and John and I have been soaking in every minute.
One of the worst things about epilepsy, is that it can strike at any time, get better and then worse, and seizure types often change. You can think you’re in the clear, and actually experience a seizure free week, month, even year, and then all of a sudden the seizures come back, sometimes with a vengeance. Most AEDs (anti-epileptic drugs) have a honeymoon stage in which the patient might see a great reduction in seizures or no seizures at all, but after a few weeks, they come back, making it clear that yet another medication has failed them. We have had a few good spurts with Madison in the past, but sadly they have never lasted. So each time we find her to be in a better place, we really soak it in, since we don’t know if it will last.
When we first began her medical marijuana journey we tried a new CBD that had equal parts CBD to THC. Her clarity seemed better, but I saw no change in seizures. Once we had finished that bottle we decided to try another strain with a little less THC. One of the good things about having her medicinal marijuana card is that we now have the ability to try various strains. One of the bad things about this is that it winds up becoming A LOT of trial and error. There aren’t many guidelines when it comes to figuring out what strain might work and at what dose, because every child is different. It’s really hard to wait and see when your kid is having multiple seizures a day, but sadly that’s the game we have to play.
The new strain of CBD isn’t sold in oil form, which means I had to buy the actual bud and make it into oil myself. (Just call me Walter White!) I bought something called the Magic Butter Machine, which pretty much seamlessly does everything for me and gave it a shot. For those that know me, you know I have personally never smoked pot before, so you can imagine the irony of me now cooking it in my kitchen for my almost 2 year old lol. Anything to help Miss Maddie!
We’ve been giving her the new oil for a few months now, slowly going up on the dose, and have seen good results so far! She has been more alert and vocal than she has ever been. Her vision seems to have improved. She’s actively grabbing at toys and occasionally smiling too! And this time, we have actually seen some improvement in seizures too! We’re down to an average of 2-3 clusters a day, lasting only 1-3 minutes. Where she used to have very intense clusters full of crying, we now have days where sometimes none of them are intense, but rather vary subtle. I am still going up on her dose of the new CBD and I hope it knocks them out for good. If not, there are more strains to try as well.
We also began weaning one of her seizure meds called Topomax. She was put on this in January against my wishes, because her seizures had become more intense again at the time, and we didn’t have everything ready to begin the medical marijuana journey yet. A week or so after starting this med she wound up in the hospital with an extremely high sodium that lead to a terrifying status seizure (lasting 2 hours.) Read about that here. I asked many times if it was possible the Topomax caused the issue, because it had been the only new thing added and her sodium had always been pretty stable, but I was repeatedly told no or that would be highly unlikely.
Since that hospital stay we have doubled her DDAVP, which is the med to help stabilize her diabetes insipidus or sodium/water levels, and yet her sodium has still remained high. It wasn’t fluctuating, which is really where the danger lies, but remained around 150-152 no matter how we increased her medication. (Normal range is 135-145). We couldn’t figure out what caused the sudden change for her, but since she was stable, we just continued to get bloodwork drawn to monitor it.
In addition, after starting Topomax I noticed her irritability increased. She had been having a rough few months from teething and constipation already, and things were now much worse. She barely slept, was inconsolable, screaming in discomfort all day, unhappy, ALL THE TIME. It was very draining for both her and I and so hard to see. I stopped praying for things like no seizures and the ability to walk or talk one day, and started asking for my baby to simply just be content. I couldn’t bare seeing her so uncomfortable and upset all the time, not knowing exactly what it was or how to fix it. We lived in hell for months, when I finally started questioning the Topomax again.
The reason she suffers chronic constipation already is due to her seizure meds, so it made sense that adding another would make it worse. Some kids have anger or irritability problems due to medications as well, and while many have found a Topomax to be more sedating, I wondered if perhaps it was making her so upset. Thank God for the many online support groups Facebook offers because after asking about this in one of the groups I had many parents confirm that their child too was inconsolable and upset as a result of this medication. I reached out to her neurologist and asked if we could wean the medication. Not only did I think she was experiencing negative side effects, but we had also seen NO change in her seizure activity from this medication. Luckily her medical team is really great about valuing my input, and agreed that if she was being impacted negatively, we could start weaning.
Low and behold, as soon as we started the wean, Madison became a different person. The irritability stopped, she started sleeping, and even her sodium has begun to drop back down! That seems like too much of a coincidence to me and I’m still convinced the Topomax caused the increase in sodium levels. I know that may not be a typical side effect, but Madison tends to react differently than the average child to just about everything! So it’s not a surprise to me. I also started giving Madison a probiotic everyday to help with gut health and I believe that, in addition to weaning the med, has greatly improved her constipation. She seems so much more comfortable during the day, and we’re down to only needing Miralax maybe twice a week as opposed to everyday to keep things moving.
Teething, which exasperated every other symptom and side effect she was experiencing, has also finally begun to end. She literally had at least 6 teeth coming in at once, including her molars, and it was HELL. Between constipation, Topomax side effects, and teething it was a perfect storm for a miserable and long few months. But suddenly things were looking up! And because she was finally feeling better, the results of the CBD became so much more apparent.
Our recent vacation to North Carolina and weekend away in New Hampshire for a wedding both went seamlessly because she was in such a better mood. She may not laugh or smile like an average child would, but we can tell she is finally feeling good and happy. It’s been such a nice change and one I hope is permanent. It’s also been funny to see how happy and alert she is while traveling and doing fun things, and how quickly she’s back to fake sleeping when it comes time for therapy lol. Girlfriend definitely knows what she likes and doesn’t like! But even her therapists agree, that if she’s happy and awake most of the day, and willing to play with us, and not them, than who cares!
I’m so glad Madison has perked up just in time for summer fun and I can’t wait to see how she begins to improve now that she’s more awake, more clear, and feeling good. She’ll be getting her adaptive equipment by next month hopefully which I think will be great for her. She’s all about trying to stand lately, and so over being held or sitting down, so I’m thinking she’ll actually tolerate her stander quite well. Plus it’s nice enough for pool days and outside fun now, which Madison definitely enjoys! We’ll continue to increase her CBD and if things continue to go well, hopefully begin weaning another AED. But for now I’m not going to worry about those things, and instead I’m going to enjoy my happy little girl while I’ve got her! Happy June and here’s to a great summer everyone!