A huge reason I write these posts is to build and maintain a community — both virtual and in-person. So, if you’re reading this, even if we have never met, know that I am so thankful you are in this with us. You are a part of that community. (As a side note, seriously, please do reach out just to connect or with any ideas you have. Not only do we feel less alone that way, but many things we have found that helped Eloise have come from people just like you.)
If you’re new to our blog, in addition to a bunch of other issues related to her chromosome deletion, Eloise started having regular seizures right after she turned 9 months old. As best as we can tell, not only will it (likely) be hard to control her seizures, but we are going to need to do far more than just keep trying various medications on her.
So that’s why Brian and I sat down this week to come up with this: Operation Keep Eloise (well).
Our Why: The background part (short version)
I’ll add a longer version at the end for anyone wanting more information. But, for now, here’s the summarized info.
We know from genetics that we have a fairly high chance that it will be a lifelong battle to find a treatment that controls or stops Eloise’s seizures altogether. And any seizure she has contains the potential to develop into something called status epilepticus, which is any seizure lasting longer than 5 minutes. If that happens, her chances of brain damage — or death — go up exponentially. Add in the fact that her brain is still rapidly developing right now, and any damage done is multiplied at this age.
Right now, as far as we can tell, Eloise is most likely to have a seizure when she’s in pain (like if she’s teething) or has a fever (like if she has a virus).
So an Eloise that is healthy and isn’t sick, in theory, is less likely to have seizures. Easy, right? Unfortunately, another thing that comes with Eloise’s deletion is often an immune system that struggles. Kids like her often get sick easier, longer, and more severely than “regular” children.
So keeping her well is going to be not only important, but, probably, very very hard.
Which is why we came up with a strategy
Our How: The plan to keep her (well)
Part 1: Boost her immune system
This is kinda a “no duh.” Make it so that it’s harder for her to get illnesses in the first place. The reality is that there are lots of ways we can do this. So if you have more ideas, feel free to let us know.
But our plan is to do this in three main ways.
1. Give her breastmilk as long as possible
There are a million studies out there on how breastmilk benefits kids’ immune systems. While I’d love to say we’re breastfeeding, that never really worked out. Surprisingly, though, a year into our journey and I am still exclusively pumping. Although pumping adds complexity to our lives right now that I’d rather not have, I cannot argue with the benefits it gives her both as far as her immune system and possible brain development.
So far, she’s only gotten fresh milk each day, but I have also built up a reserve in our freezer. We have just sent off a few months’ worth of that stash to be freeze-dried — because that way it will keep up to 3 years. Plus, as she slowly loses interest in the bottle completely, we’re hoping we can still add breastmilk to her food in powdered form.
2. Give her various supplements known to have beneficial effects
One part of giving her supplements is to try loosely following the Nemechek protocol — giving her some specific types of omega 3s, olive oil, and inulin. (And possibly, later, adding a Vagus Nerve Stimulator.)
The other part is giving her stuff good for her health and for seizures
- Turmeric (turmeric’s antiseizure properties + turmeric health benefits)
- Vitamin K2 (vitamin K2’s antiseizure properties + vitamin K2’s brain function benefits)
- Glutathione (glutathione’s antiseizure properties + glutathione helping with autism)
- Elderberry (antiseizure properties of elderberry)
- Echinacea (echinacea supports the immune system)
- Vitamin B-12 (a deficiency in vitamin B-12 triggers seizures + vitamin b-12 supports brain development)
- Vitamin C (vitamin c reduces brain injury during seizures + vitamin c supports the immune system)
3. Feed her nutrient-dense stuff that’s good for her gut
We don’t know a lot on this topic, but we keep hearing that a healthy gut reduces brain inflammation and can (hopefully) help prevent or reduce some seizures. So here’s some really great stuff we give her on a daily basis:
- Bone broth
- Kefir
- Red lentils
- Egg yolk
- Lots and lots of local veggies without any additives (we buy from babycool.ee)
- Lots of meat (the aminos in meat is just something that are super important for her development)
- Fish
- Liver
- Probiotics (strains actobacillus plantarum, Lactobacillus reuteri, Saccharomyces boulardii, Streptococcus thermophiles, Bifidobacterium lactis, Bifidobacterium longum & Bifidobacterium infantis)
- Vitamin D
Part 2: Keep our life bubble (mostly) disease-free
This is the really tough part. Keeping her away from illnesses as much as we can.
When we sat down to think through this, we started with the extreme — should we go buy a house in the middle of nowhere, getting only no-contact deliveries, and just hibernate with Eloise until she gets old enough that she’s not quite as vulnerable?
We pretty quickly ruled that out. A pair of parents that go crazy won’t make very good caregivers. We HAVE to maintain contact with real life humans.
So we decided our best bet is just to figure out in which scenarios illnesses are the most likely to spread, and then somehow avoid those circumstances or people as much as we can.
When we thought through it, there are four areas in which we or Eloise are most likely to catch some sort of virus:
- Hospitals (unfortunately we can’t avoid those — that’s where her doctors are)
- Being unmasked around large groups of people (any gathering over 10)
- Spending time with symptomatic people (cough, runny nose, fever, etc.)
- Kids that attend school (anyone with kids knows how quickly viruses pass between children)
How you can help
This is the part I don’t like. Restrictions on our friends.
Sigh.
But unless we are sure that her seizures are under control, it’s our best shot at keeping her well.
So for those incredible humans in Estonia we have the priviledge of seeing in person, here are our guidelines.
First, in general we’re always ok to see people either outdoors or when all of us wear masks. But for time without masks indoors, this is what we’re going to stick to until this summer (when chance of illness goes down dramatically).
If you want to see us or Eloise in person, you can first ask yourself these questions:
- In the last 7 days, have I been in a crowd of 10 or more people, without a mask, without keeping a 2 meter distance?
- In the last 5 days, have I been sick or in contact with someone who I know was sick?
- In the last 7 days, have I been around a child or teen who is in school or kindergarten?
If the answer to all three questions is no, then come on over! If you answer yes to at least one, then either let’s hang out outside, or please wear a mask.
Sadly, that does likely mean we will see a lot less of friends with children until the summer. But, well, we don’t know what else to do. I’m sure you already know the pain of “send your kid to school, then they come home for a week sick, then go back to school for a few days, then come home sick.”
I really can’t wait for the summer to come.
Our Why: The background part (long version)
In case you wanted more details from that first section, then that’s what this is. Otherwise, you can just skip to the end.
A little more about her seizures
We have a fairly high chance that it will be a lifelong battle to find a treatment that controls or stops Eloise’s seizures altogether.
Why?
The fact that her seizures started before she hit 12 months mean her seizures are likely related to her partial deletion of a gene called SCN1A. While, thankfully, most people in life who have seizures or are diagnosed with epilepsy can find medications to treat them, seizures related to SCN1A are not that easy. Many kids with SCN1A mutations or deletions end up diagnosed with something called Dravet’s Syndrome — which is one of only two named syndromes that bring with them treatment-resistant epilepsy.
Why it’s important to stop her seizures
Any seizure she has contains the potential to develop into something called status epilepticus, which is any seizure lasting longer than 5 minutes. If that happens, her chances of brain damage or death go up exponentially.
But aren’t seizures harmless?
The short seizures Eloise has been having regularly, in theory, should not hurt her. But each time she has one, it has the potential to turn into one that is longer than 5 minutes. One statistic said that 1 in every 3 status epilepticus episodes ended in death. Probably related, Dravet Syndrome kids have a 10-20% chance of dying before they hit adulthood. But, regardless which stats we look at, it’s not great.
Even without possible brain damage due to seizures, Eloise will already definitely be profoundly mentally disabled (the best case scenario is that she will reach the mental age of 1 or 2 years old). However, her brain is still developing rapidly and any long seizure could do a lot of damage especially in these earlier years.
What triggers the seizures
Right now, as far as we can tell, Eloise is most likely to have a seizure when she’s in pain (like if she’s teething) or is ill or has a fever (like if she has a virus).
Why it’s important to keep her healthy
An Eloise that is healthy and does not catch any viruses, in theory, is less likely to have seizures. And, thus, less likely to have any resulting brain damage — or, in our worst case scenario, to die. Kids with her deletion have compromised immune systems as well, so it’s an uphill battle for sure.
So that’s where we’re at
Every time we have to tell a friend, “Sorry, but we can’t do that because…” I feel this knot in the pit of my stomach. I feel like I’m shaming them, telling them that something about their lifestyle or what they have done is wrong.
It couldn’t be further from the truth. I want everyone to live their lives and fill it with as much joy as they can. But, until we’re sure we can keep Eloise seizure-free, this is the only way we know to live life for her. It’ll just be a little more isolated than we’d have wished for.
All our love and hugs. Thanks for coming with us on this journey.
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 