48 weeks: 10 days of no seizures!

Eloise is 11 months old, wow! Looking back, wow we have so much more capacity this week than we did a month ago. I think there are quite a few things contributing.

Physical growth. Her weight gain is still pretty great
Gross motor skills growth. She’s developing still, although slowly
Seizure rest. She hasn’t had a seizure since December 24th (our best guess is either luck or that turmeric somehow reduced inflammation enough to pause them for the moment)
Seizure treatment. We have some possible avenues to explore that may help with her seizures (just in case you missed it, due to the fact that she’s missing a small part of a gene called SCN1A, there’s a very very very high likelihood, like 90% or more, that controlling her seizures will be a lifelong struggle — which is not normally the case with epilepsy)
Working together. Brian and I have found an arrangement that, for now, gives both of us a lot more energy and helps us both with Eloise and getting stuff done
Savoring. The word “savor” is really directing our lives quite a bit right now, and it’s helping

I’ll dive into each topic a little more. And then give her 11 month summary at the end.

Finally, good news on weight gain

Anyone following us will know that her weight gain has nearly always been an issue. Brian and I both held our breath when we went to see her family doctor last week. We were so sure that the news would be bad.

But it wasn’t. She still continues to gain more than average at this age and, in fact, she finally hit the charts for one of her percentiles. At the doctor’s, she was at 4% for her weight. Sometime this week or next week she should officially triple her original birthweight — right on time.

Look how tiny she was at 3 months!

Now she looks huge in comparison! Eloise rocking her bouncer at 11 months.

Although I will admit that my back is not as happy about her weight gain. So I’ll need to figure out what to do about that.

Her development is still moving forward, slowly

Although she still has completely stopped rolling and at the moment protests any and all physiotherapy exercises, she continues to be more and more interested in objects and grabbing them. (It’s still pretty faint, but it’s something.) So that feels good.

Speaking of developing new skills, we thought we would try giving her a pacifier again. Historically she’s hated them, but I thought since she’s constantly sucking her fingers… why not try? Well, she has a way to go until she gets the hang of it but it’s pretty cute.

Not only that, but she seems to have entered the “anal phase” which neither Brian nor I are so excited about. Up until this last week she’d generally been doing great at waiting until we put her on her potty chair to go poo. But this last week? She waited to poo until we took her OFF her potty chair. Over and over and over again.

So instead of her diaper changes taking 10 minutes, they sometimes take 40 as we see her pooping and then put her back on the chair, wait, take her off, she poops again and we put her back on the chair. Repeat.

Sigh.

Well. You can’t have everything, I guess.

Seizure-free for 10 days

Is she finally well again and that’s why the seizures have stopped? (She’s still been vomiting more than we’d like, although she will sometimes have a day or two where she’s back to normal. Yet she still has a temperature every evening over 37.3 degrees celcius, which historically has definitely been a threshold above which she has seizures.)

Is it the medicine? (A week or so before and she was put on a higher dose of Keppra)

Is it her diet? (After hearing about the Nemechek protocol from a fellow special needs mom whose son has seizures, I watched a short youtube video which mentioned adding 2 supplements to her diet. One of those is contained in turmeric, another in olive oil, yet another in chickory. I added turmeric on December 24th and have given it to her every day since)

I think my answer to all three of those questions is, likely, “no,” that’s probably not what’s helping. Brian and I both feel that, likely, we will see her seizures return again soon. We’re probably just lucky that, at the moment, we have a break.

But only time will tell. We will see the doctor again in a little less than 2 weeks and then have an EEG. That will tell us, for sure, whether the epileptic activity in her brain has changed or decreased.

Some possible ways to help treat her seizures

I was so thankful that a few folks reached out and gave us some of their experience of what they have learned in treating their kiddos’ seizures. (If you’re reading this and your kid also has had seizures, I would love love love to hear from you what has helped you all or what you have learned. Because we still know almost nothing.) Like VNS or Nemechek protocols or Immunoglobin therapy. The more I learn from you all, the more information we have and the more hope we have that maybe we can find something that works for Eloise.

I wrote last week that I had seen two cases where kids like Eloise that are missing the same or similar genes have found ways to control seizures. There’s one little kid where a Keto diet has been helping, and, another little kid has seizures seemingly under control by using cannibis and possible immunuglobin therapies. Even though there’s no guarantee either of these therapies will work for Eloise, they might be good places to start.

At the moment, here is our plan:

Wait until after the EEG in a few weeks to start trying CBD oil (cannabis oil) so that we can tell for sure whether her current anti-seizure medication, Keppra, is actually working.
Do what we can to help keep Eloise healthy (continue pumping to feed her breastmilk, add a few more immune-boosting vitamins and foods to her diet, and put together guidelines on in-person contact with others to help reduce the possibility of Eloise catching a virus)
Start slowly gathering as much info as I can from other parents on what has and hasn’t worked for them as far as diets and drugs
If CBD oil doesn’t help, consider a Keto diet for her

Brian and I’s new arrangement

I wrote a few weeks ago about the fact that Brian and I were struggling and feeling overwhelmed and alone as we both went about our daily tasks and crossed off things from our “to-do” list.

I might write more about this later, but for now, we’re doing soooo much better.

Brian and I both have been having additional back pain because she seems to insist on rarely being left alone these days. And with her extra weight, it adds up. But just listen to that giggle. How can we say no?

One thing we’ve noticed over the years is that Brian’s brain feels better when he only has one or two major tasks to focus on.

I’m nearly the opposite. I feel overwhelmed if I only have one or two big tasks — I need to juggle more like 20 and move between all of them constantly to feel okay. (Just for clarification, I think Brian’s way of thinking is the more natural, healthy approach, but I don’t know how to fix my multi-tasking addiction.)

So we decided to trial Brian being the primary caregiver of Eloise for 6 days a week. His main focus will be her, and helping her develop in the short and medium term. For me, my job is “everything else” — research, contact with people, decluttering, laundry, selling stuff, dishes, cooking, groceries, errands, etc. And thinking about Eloise’s development more in the longterm (that’s where stuff like research comes in).

It is working really really really well so far. This morning we both talked about the fact that we feel like we have way more capacity than we did just a few weeks ago. And we’re feeling more ourselves.

It feels good.

(And I definitely don’t mind that Eloise seems to like me way more now. I guess it’s that age-old thing that the parent they see less of becomes their favorite.)

The word “savor” is helping us

I wrote a few days ago about the fact that we chose a word for 2022 — savor. I still can’t believe how much it’s helping my brain.

I feel relief that we don’t have to find a movie to rent for our Friday date nights because we can just watch one we already own.

I feel relief that I don’t need to compare Eloise’s development with “normal” kids or get caught up in the worry about what might happen in the future but, instead, I can just enjoy where she is right now.

I feel relief that I have permission to slowly sip my coffee in the morning as I read rather than rush to get through it to the next thing.

I feel relief that I can and should stop and stare and breathe in for a few minutes as I look at a particularly beautiful pattern of shadow and light on my walk outside.

I feel relief that to plan our meals I just need to go to our freezer or canned goods collection and start there to find a great recipe to make.

Savoring things is slowly letting off some stress. Gosh that feels good. I hope it continues that way.

And for her 11 month summary

Before I forget, I should make a list of what is and isn’t happening.

She doesn’t make eye contact
She does smile a lot and giggle
She has 2 top teeth and 2 bottom teeth
She still has her tongue thrust reflex
She doesn’t have any more food intolerances/allergies we don’t think
She eats by mouth the normal amount of solids for her age, although all puree (we prioritize high fat and high nutrition content so we give her egg yolks, lots of meat, bone broth, red lentils, kefir, fat skimmed from my breastmilk, fish, liver, turmeric, olive oil, flax seed oil and at least 7 different local vegetables every day)
She is only just starting to pay attention to objects and grasp them
If we support her, she can sit pretty well
She doesn’t crawl and absolutely hate hate hates tummy time
She won’t put weight on her feet if you try
She does “talk” a lot with us back and forth, but never any consonant sounds
She loves snuggles and rarely wants to be put down
She doesn’t like her swing any longer but suddenly likes her baby bjorn bouncer
She normally falls asleep around 8 at night and wakes up at 4:00ish for around a 45 minute night feed and then goes back to sleep again until around 8
She takes two naps, normally 40-80 minutes with 3 hours between each
She still loves being read to, although not as much as she used to
She is still very attracted to looking at lights
She can hear very very very very well and startles easily sometimes
We aren’t sure how well she can see, though she definitely can (and her two eyes work a little out of sync with one another)
She will triple her birthweight this month if she hasn’t already
She almost never poos in her diaper, only when we do her diaper change (we have been using a potty chair for many months now, but she still definitely pees in her diapers — cloth or paper)
I still pump breastmilk for her, though I guess if I wanted to try really really hard to get her to latch, I think we could do it. The thing is… she likes to bite everything these days with her teeth and, well, I don’t think I want to be her chew toy until I get her trained not to.

Okay, that’s enough from us. Gosh, I am always amazed how much it helps me feel positive by writing up these summaries every week.

Brian wants to start introducing the AAC (an alternative communication app) device to Eloise. This was them this morning. It will likely be years until she can actually use it herself, if she ever can. But we wanted to start early, just in case she can. Wish us luck!

Over and out from the Taulbee household,

Mallory, Eloise, and Brian