I feel so much lighter than last week — for so many reasons. Even though we had a short setback, we really had a lot to be encouraged about.
The Instagram summary
This week, I thought I’d try adding in a summary section that covers just the highlights of what went on. So here is Eloise’s week according to her Eloise the Tiny Fighter Instagram stories:
Seizures are back, but mild
Eloise has continued to have seizures this week, but they’ve been so gentle and short that they haven’t really affected much. Most have lasted less than 30 seconds. She has one (often while on her potty chair, interestingly, because bowel movements can be a trigger), and then she’ll usually return to normal right afterwards. Such a relief.
But we did have more seizures than we probably would have otherwise this week. Why? Well. We found out some stuff about commercial CBD oil.
Commercial CBD oil was a fail
Can you tell which day we started the commercial CBD oil?
- Monday: 3 seizures
- Tuesday: 7 seizures
- Wednesday: 3 seizures
- Thursday: 0 seizures
- Friday: 0 seizures (so far — it’s only 11:15)
We started CBD on Monday afternoon — she had one seizure that morning before we started, but then she had a seizure within 40 minutes of the first CBD drop. And then had another seizure after the second drop. The same thing on Tuesday — a seizure within 30 minutes of each drop and then more later. That made the pattern clear. No more of this particular CBD oil for Eloise.
So if CBD oil supposed to be so transforming, what happened?
Afterwards, Brian found a small 2020 study that showed that medically prescribed CBD reduced seizures on average by 40% whereas commercial/artesinal CBD increased seizures by 70%. Now, it was a study on only 30 patients, which isn’t very many. But we can now say that our experience did reflect this.
So we stopped the oil less than 24 hours after we started. It looks like we are back to medications.
(As a side note, quite a few people have reached out and pointed to articles or anecdotal evidence supporting increased efficacy of CBD oil when used with more THC. Unfortunately that seems to be illegal here, and we aren’t ready to risk our residency status to try it out at the moment.)
The oil may have also messed with her sleep
Fascinatingly, CBD oil is supposed to help with sleep. In Eloise’s case — although maybe it was just coincidence — the opposite happened. Starting Monday night, there were periods of time for 3 nights in a row where she woke up and just could not fall back asleep for hours. Not normal for her. Brian actually had the same experience on this oil when he tried it a few weeks back, so maybe it is just the oil.
Thankfully, though, last night was better. So hopefully Eloise will go back to sleeping well during the day and at night.
Learning more about Keto diets for seizures
I might have mentioned, but I’ve been a bit confused why doctors here (and all over the world) don’t suggest a ketogenic diet. Not only do most of these medicines they prescribe have sometimes devastating effects on the body, but research has shown that ketogenic diets have far less severe side effects and may work.
I even asked the doctor here (the younger one who is a resident) about it a few times. The first time she just said they try medicine first. The next time she mentioned there wasn’t anyone who knew how to do it properly. So I left confused.
I knew of a few other adverse effects, like increased reflux due to the high fat diet or how time-consuming it is to weigh everything or the fact that she could develop kidney stones. But those didn’t seem like they would be huge obstacles.
However, I’ve now come across two other reasons that make sense of why it may not be the best option for kids like Eloise that eat orally.
- They lose a lot of weight. Considering this was also my experience on an almost-keto diet (I had to finally eat around 3000 calories a day to stop my rapid weight loss), that would be especially hard for Eloise since she has historically struggled to grow.
- They may lose interest in food. I know that fruit, for example, is not allowed on a keto diet. And, well, to get Eloise to eat at this point, we have to give her a lot of fruit puree. (She will eat the first 2/3 of her meal without fruit, but toward the end we have to put a tiny bit of fruit on every bite or she refuses.) So I could definitely imagine a scenario in which she would almost stop eating. And that would be concerning.
Adding a breathing monitor
As I was reading research on SCN1A and epilepsy for last week’s update I was reminded that sudden death is still a very real possibility for Eloise — and, if it happens, will most likely be at night (the statistics I’ve seen range anywhere from a 10-30% chance of her death before she turns 16). There’s even a term for it, SUDEP (sudden unexpected death in epilepsy). After I cried a little the day it hit me, I decided there was one small thing we could do.
We could finally start using that Snuza Hero baby breathing monitor we got before she was even born. It’s a tiny little thing that clips to her diaper at night. If she stops breathing, an alarm goes off.
Will it prevent her from dying? Probably not. But, at the very least, it makes me feel less like a victim of circumstance — we can at least be alerted if something is wrong. Then, if there’s anything we can do to save her life, we can do it.
Her development is encouraging
I wrote last week that Eloise is still developing — even if slowly. Or, as the speech therapist said in Brian and Eloise’s outpatient visit last week, “She’s slowing down in her gross motor development but speeding up in her cognitive development.”
Yes!
She might be re-gaining rolling
The 1st video below is from October 5. The 2nd video is from this week.
The last time we remembered Eloise rolling was before her big seizure on November 6th. Ever since then, it didn’t matter how often we tried to help her or how long we left her on the floor, there was just no more rolling. It was gone.
With every major seizure there’s always a chance Eloise will lose skills. And then never gain them back. But hopefully, just hopefully, rolling might be a skill she lost, but is finding again.
A few days ago, Eloise rolled 3 times in a row from back to tummy on an incline. We thought it might have been an accident so we didn’t get too excited.
But earlier this wek I left her alone on the floor and soon heard her protesting. When I came to see what she was upset by, I discovered she had rolled from her back to her belly.
So maybe, just maybe, she might be gaining those skills back. We can hope and pray. 🤞🤞🤞
Communication buttons are working better than imagined
We knew very early after her genetic report came in March of last year that Eloise will almost definitely be nonverbal. Even kids at the highest functioning of her 2q24.3 deletion have only a few words. (There are 2 exceptions I know of where they have more, but those kids have far smaller deletions.) So we wanted to start early in figuring out alternative ways for her to express herself. After talking to an incredible speech therapist in Seattle via zoom a few weeks ago, we bought 4 buttons for 30€ on Amazon DE to start incorporating pre-recorded messages into our lives.
You might enjoy her first phrase, though. 😂
But, on a serious note, we started experimenting a bit with the communication buttons this week. They are definitely harder for her to use than the buttons made specifically for special needs kids, but they at least help us understand if she might be able to understand the concept — our “MVP” as you might say in the startup world.
We learned from the speech therapist that the phrases need to be only 1 word for now, and it’s best to use something called Core words. I’d like to say that Brian and I spent the time looking through lists of core words to come up with the best ones for her, but we haven’t had the mental space.
So, for now, we’ve settled on green is “More” and red is “Stop.”
A few times now, we tried actively using the buttons during her feeding. And, to our surprise, she seemed to quickly figure it out. Unless our imagination was playing tricks on us, she seemed to understand that she needed to hit the green button to get more food or milk (unfortunately it doesn’t always work, so we often tried to “help” her). It even looked like she was trying to avoid the red button.
However, it was also clear, as we watched her, that though her mind knows she needs to press the button — her fine motor skills aren’t good enough. So last night, for example, she would just try to pick up the button because that was easier than hitting it.
Definitely grabbing for things
Yesterday, after the experiment with the buttons went so well, I was curious what would happen if I gave her 3 toys on her little tray. Would she ignore them? Would she accidentally push them off the tray with all of her arm flapping? Or would she actually interact and maybe even choose one?
I would have guessed option 1 or 2. But I was wrong. I came back and she had picked up the soft rattle.
I thought maybe it was an accident, but, no — she picked up the very same rattle again as I watched.
This is huge!
Her weight
For months and months and months, weight gain was a constant source of stress between us and the doctors. But, thankfully, ever since she started solids it’s been going great.
Gosh it feels good for her to be catching up and almost be on the charts! She was 4% for height the last we went to her doctor’s. And almost 3% now for weight.
Making steps towards better care
Brian and I are starting to feel some relief in the area of Eloise’s care, for a few different reasons.
The geneticist agreed with us
On Tuesday, I got a call from our kind geneticist. I won’t go into the details here of what happened, but the short version of it is that she did agree with our conclusions — Eloise is missing up to 80% of SCN1A, it is associated with Dravet’s Syndrome, and Eloise should definitely get treatments according to the Dravet protocol rather than like normal epilepsy patients.
After our phonecall, the geneticist was going to immediately call our current neurologist and explain the situation. And, on Monday, after the geneticist returns to work (she was actually off this week), she will update Eloise’s medical records to reflect the additional information.
I got connected with a fellow Dravet parent in Estonia
I am so thankful for all of the people that reach out to us after reading our posts. One of those people who has is an incredible fellow special needs mom named Kadi. She and I talk from time to time and she’s helped me on more than one occasion. Now, she found the contact of a mom in Estonia who has a little girl with Dravet Syndrome.
Even though Eloise’s development will be far worse than 90%+ of other Dravet Syndrome kids (because Eloise has a huge chromosome deletion in addition to Dravet), it’s been so helpful to find out about their family’s experience. They haven’t had an easy road, either. But the good news is that they’ve found an incredibly helpful and empathetic neurologist in Tallinn that has really worked to get their daughter the best care possible. The kind mom has already helped me understand better what’s possible in Estonia, and what we can do if the available medicines don’t work. For example, there’s a well-known drug released in the US called epidiolex which is a synthetic form of CBD made to treat Dravet Syndrome patients. It isn’t technically available in Estonia so it isn’t covered by the healthcare system. However, thethey were able to get it for their daughter by fundraising the 10,000€ yearly cost on a local television show.
So we will have options if we need them.
Tartu update
Thank you again to those of you who told us about the Tartu rare diseases center. I reached out to them this week and we are in contact. A neurologist we wrote to in Tartu had also mentioned that they may be able to schedule a 2 day visit in early February for Eloise to begin checking her out.
But I will say, our stress levels have decreased dramatically now that it looks like our current neurologist may actually make decisions according to the fact that Eloise likely has Dravet. That is a huge relief.
Working together
I still haven’t made a part 2 to Brian and I’s Time to re-learn Teamwork post, but that doesn’t mean we’ve stopped talking about it. In fact, quite the opposite. We are still trying to find the right balance in who does what and when to best support one another and our relationship.
We got a short break
With all of our guidelines of who we can and cannot see in order to keep Eloise well, it’s probably going to be really hard to find a caregiver once we finally apply for and receive a more severe disability level for Eloise.
But Brian and I realized suddenly this week that I do have two really wonderful friends with a decent amount of time that I see fairly often that would be happy to watch Eloise for a few hours. We asked them and, thankfully, they said yes.
So, on Wednesday, Brian and I went on a 2 hour walk around the neighborhood while, apparently, Eloise partied with the pair of them.
Still brainstorming what works best
Brian and I talk, probably on a daily basis, about what’s working and what isn’t. For example, apparently I need to greet Brian in the mornings to make him feel connected and like we aren’t just business partners in all things Eloise. At night, I need us to pause and talk about what was great about our days to make me feel like we’re reaching for the positive.
And, apparently, me doing blog updates on Mondays make me feel like I’m getting a late start on productivity for the week. So Brian suggested I move my updates to Fridays.
Because, why not?
So. Well. Here’s our first weekly update on a Friday.
It does feel pretty good — like I am ending my week rejoicing in what went right.
A little lighter and happier this week,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 
You guys are doing an amazing job!! ❤️🙏❤️
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