This kid takes forever to grow a new tooth — does anyone else have a kid who takes a month to grow one? But when we got such incredibly great news this week, it’s hard to really complain.
The week 56 highlights (according to her instagram)
From the Eloise the Tiny Fighter Instagram stories this past week:
š„³ No seizures AGAIN!?!? š„³
If you haven’t read our previous post about our hospital visit this past week, you’ll find that there was NO seizure activity on her EEG this week! What does that mean? It means that right now there’s no seizure activity — the most likely reason is that her medication IS working, despite the possibly too low dose.
- Week 49 (Jan 1-6): 0 seizures
- Week 50 (Jan 7-13): 15 seizures (Jan 11 went to the hospital)
- Week 51 (Jan 14-20): 16 seizures (Jan 17-18 tried CBD full spectrum oil)
- Week 52 (Jan 21-27): 21 seizures (Jan 27 increased Keppra from 90mg to 135mg 2x/day)
- Week 53 (Jan 28-Feb 3): 5 seizures (Jan 28 tooth pain started, Feb 1 increased Keppra to 135mg 2x/day)
- Week 54 (Feb 4-Feb 10): 0 seizures (Feb 9 congestion started, Feb 10 decreased Keppra to 130mg 2x/day)
- Week 55 (Feb 11-Feb 17): 0 seizures (Still teething)
- Week 56 (Feb 18-Feb 24): 0 seizures (Still teething, Feb 18 increased Keppra to 160mg 2x/day)
What does that mean for her future? We don’t know. There are not very many kids like Eloise who have a deletion of just SCN1A and SCN9A sodium channels. I now know of 4 cases, but I have very limited information even on these 4 kids.
From that little information I do have, I’ve never heard of a kid who had an SCN1A deletion whose EEGs showed seizure activity but later whose seizure activity disappeared from EEGs or with medication. Essentially, I don’t know of any kids who have a deletion of this important gene who were ever able to control seizures long-term. Ever.
Could it be there are kids whose seizures are controled with a similar deletion? It could be.
All we can do is pray and hope that they exist, and that Eloise may fall into that group.
š° Our Tartu visit was so full of hope! š°
For those of you not from Estonia, it’s helpful for you to know that we live in Tallinn, the capital here. It holds around 450K people and is on the north border, right on the Baltic Sea. Tartu, on the other hand, is a city with a population of 100K in the south of Estonia. It operates like the intellectual capital here and actually reminds me of a medieval version of Columbia, MO. Which makes sense, because it’s home to the largest Estonian University.
We weren’t really sure what to expect. We’d heard good things from several parents who had been frustrated with the level of care of their kids in Tallinn, but it was scary to hope. Regardless, even if it wasn’t as long and as thorough a visit as we might have imagined it could me, so many wonderful things happened.
If you don’t feel like reading the blogpost of what happened during our hospital stay, then the short version is this:
- The feel of the place. The staff in Tartu felt like their motivation was to do a good job — really, to help us. That was such a gift. In Tallinn we didn’t get that feeling overall.
- Good MRI news. Eloise’s MRI scans showed her brain cysts/lesions from 1 year ago were gone.
- More MRI news. Eloise’s MRI also showed some fluid that shouldn’t be there, the hopeful part is that they have a plan to monitor it and do something about it if it gets worse.
- Great EEG news. Eloise’s EEG came back showing no seizure activity — a total unexpected surprise.
- Hospital stay. It felt redemptive for Brian to be in the hospital with us — I wasn’t alone with Eloise for the first time in 4 hospital stays.
As far as her EEG, at best we’d hoped that Eloise’s medicine might decrease some of her seizure activity, but we never thought it might eliminate it completely. We are trying not to get our hopes up too much, though. After all, the brain is complex and right now we know almost nothing about how it works.
But, for now, what it means for our family is that we’re now starting to re-evaluate some things we had put off for fear they might trigger seizures. It does feel scary to hope, though. Which is why we’ll probably wait a few more months and for another clear EEG before we even start hoping or imagining a life for the 3 of us that doesn’t involve seizures and emergency hospital visits and regressions and possible death — because I just have heard too many stories of families whose kids with SCN1A issues seemed to have “grown out” of seizures for a time, and then they came back worse than ever.
So, for now, we’re holding our breath for a little while.
āøļø Teething + hospital visit = short therapy pause āøļø
Eloise is STILL teething. (The internet said tooth pain shouldn’t last for weeks but we are now on 27 days of teething affecting everything). We tried to push through physiotherapy with her last Saturday but she ended up crying for hours afterwards. Monday when we went to the hospital in Tartu she also screamed for hours. Yesterday, she also screamed for over an hour and was absolutely inconsolable. Sometimes peanut butter or being in the cold air for a few minutes helps. Sometimes it doesn’t.
Really, though, for her really bad pain episodes, nothing seems to work. We’ve tried various normal teething options — teething toys, kamistad, calgel, neurodent, cold foods, frozen foods, amber bracelets, belladonna — but no success. However, last night a lovely friend who works in lastehaigla traumapunkt (Children’s hospital triage) gave us some tips on better dosage for efferalgan and ibustar for her (apparently the dosage information on the boxes aren’t right), so we will try that in the next few days.
The exhausting part is that even though she’s been seizure-free since February 1, she’s been struggling to eat that entire time. So Brian and I have been struggling to enjoy this “time off” because, still, feeding her is a fight depending on her pain levels. We have basically given up trying to feed her any sort of a balanced meal. Her main nutrition at the moment seems to be peanut butter, bananas, sugar-free fruit yogurt, breastmilk, and Jimmy Joy flavored meal-replacement powder. Those are the foods she will most consistently eat. Sigh. I am thankful for the voice playing in my head of the children’s hospital nutritionist who said, “When she’s in pain, the best food to feed her is the food that she will eat.”
Amen. Wise words that have relieved me of at least a little guilt here.
We are feeding her food she will eat.
šŖ Development šŖ
With Eloise grabbing everything and refusing to eat hardly anything, we made a discovery. Last Friday, when Brian and I were exhausted from trying to find foods she might eat more than a few bites of, we almost jokingly gave her a pouch of yogurt to hold — just to see what she would do. Imagine our surprise when she not only held onto it for a bit, but actually fed herself for a few minutes.
We were shocked.
So Saturday, we gave her pouches for every meal in hopes she might eat a little more if she did it herself.
So encouraging.
Not only that, but, we were both filled with so much gratitude when that sled we found at the dumpster turned out better than we imagined. Eloise not only could sit in it (although she did fall sideways after a short time), but loved it.
I am so thankful. I will cherish this. Because life will not always be this good. š„²
I never even dared to imagine sledding rides with this kid.
š§¬ Waiting for a new disability decision š§¬
One thing doctors and specialists have told us over and over again is that Eloise’s disability ranking, keskmine (the lowest they give), is not accurate. And, in order to get better help for her, we needed to get a new one.
We sent in a new application on February 1, but they have a month to respond. What we have learned in that time period is that none of her home therapies will be funded by the local government or with her rehabilitation plan unless she gets a more severe disability assignment. In addition, if they do give her a more severe disability label, we will also get access to funding for 90 hours of caregiving help each month. Which would be incredible.
We’re crossing our fingers and praying they do better this time around. And, if not, we will have 30 days to appeal the decision.
š„ Russia invading Ukraine š„
Because several people have asked — Yes, we are safe. No, we are not afraid. No, we don’t plan to leave Estonia.
But we, of course, are lucky.
Estonia is a part of NATO — so if Putin tried to invade, the rest of EU and the US would be more likely to step in. But Ukraine isn’t so lucky. And we have far too many friends and former colleagues who are grieving and bracing themselves for the worst to happen to their loved ones still at home. And Russian friends horrified and grieved by what Putin is doing. If you feel helpless and want to do something, quite a few of my Ukrainian friends have all posted the same website where you can make donations to the Ukrainian military. One of the most useful things we can do is give money to help Ukrainians arm themselves.
We know all too well that it’s hard to watch hard things happen to someone you love and feel absolutely helpless to do anything to change the situation.
It’s been a miraculous week for us, but a tragic week for so many others.
Hoping some of the miracles we had this week will spread elsewhere in the world,
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 
Leave a comment