At only 0.5 g carbs per half-cup serving (1/4 of the mix), this is a huge find for us: Simply Delish Jel Desserts.
We love it because the low carb count means we can fit this in as a snack for Lily, who is still on 15 g carbs per day. She’s never been a fan of Jell-O or other gelatin-based desserts, but sweet is sweet and snacks are snacks and to be pursued.
For Lily, food manipulation is important – being blind makes texture that much more important . The instructions call for a total of 13 ounces of water (3 cold, 10 boiling), and I typically now use a total of 10 ounces. That holds up better to fingers grabbing at them.
I’ll post later about trying to make these using sugar-free Kool Aid, and the experiments with various molds, but today’s double batch were prepared in cake pop silicon molds that I bought at Michael’s. The tray makes eight, so two are a single serving.
Note: having some tech problems tonight. Hope to come back to fix formatting weirdness and insert some links.
Lily is having a hard time with seizures, and now that I’m living so nearby, I’m becoming a little obsessed with finding answers. You know I’m a scientist. I know how to find and read research papers. I am not finding what I need on PubMed, though…yet. I am also feeling mild withdrawal from my favorite databases, as this is the first semester that I haven’t been working for a place that got me that access since I started college.
The help I want: guidance with primary/review papers – firsthand accounts from people with epilepsy who have used hormonal birth control at the same time – firsthand accounts from people who have epilepsy that affects sensation and muscular spasm in their faces/mouths. Maybe also people with epilepsy who can tell me about sensations that make it difficult/impossible to tolerate the sensation of wearing a shirt.
Let’s get to the details. Lily is on Depo shots, and spotting most of the time. We don’t have good data on the seizure intensity correlating with the spotting/flow intensity, but I am increasingly convinced we’d find it if I got the staff to record the spotting. Her teachers told us that most of their female students with epilepsy started having problems when they hit puberty; one of the main reasons I distrust Lily’s neuro is that he didn’t believe this, even when I sent a clipping with my parents from the NY Times‘ science page. But there’s definitely work out there on catamenial epilepsy.
The ketogenic diet seems to have gotten her to only having seizures between 5pm and 9pm (mostly 6-7, with some variation). We fear that her 9pm meds get her through the night okay because her body slows down, but her 9am meds aren’t lasting because her body revs up. If this theory is at all plausible, it overlaps the possibility of the menstruation-related metabolic shifts that seem to be a known thing.
I want her off Depo. I’m on Seasonique, successfully, so I know there are options. I want that to be the answer – to settle down the metabolic waves, in hopes that the keto diet plus meds then prevents the use of rescue meds. It’s so great that there are fewer seizures – but the ones that happen are incredibly disruptive and really, really different (facial, possibly involving respiration, probably involving tingling skin, probably causing anxiety or panic).
Do you have advice on either how to help communicate this to her neuro, or how to find readings on PubMed? Or just tell me it’ll be okay…
An essay by Sarah Eyre, who experiences seizures as part of her multiple sclerosis, and whose friends have responded in a variety of ways.
I got to visit Lily for a brief time in celebration of the Jewish holiday Pesach (also known as Passover). We both love the holiday, although for different reasons. Me, I like the food – as someone who enjoys cooking, I actually relish the challenge of not eating leavened foods for a week. I love the spring flavors, with the fresh veggies on the table and usually my first strawberries of the year as part of the dessert. Lily loves that we have books at the table, since we use a written text to guide the traditional retelling of the story of how the Jews left Egypt. She “reads” whenever anyone has a part to read aloud, inventing her own stories. (Being totally blind, of course, she can’t read a typical printed book.) She also loves cuing the rest of us for the passages read aloud as a group.
Lily and I both were struggling a bit this year, though. Turns out that flying for too much of a day is not something my body likes, and dealing with luggage aggravated the finger joint pains I get from my fibro. Lily was recovering from “hospital dentistry,” where she was put under general anesthesia so she could get fillings and X-rays and some other, more intensive care than she can get from her normal dentist. We’re not sure, still, what’s going on with her re-manifested menstrual cycle.
So we sisters had time to be together and be okay but not okay together. Lily was so full of words – stories just tumbled out of her – although I could see that she was searching to express things she is confronting for the first time. I don’t think she knows how to find the words for fear, frustration, confusion. She hasn’t figured out how to tell us when she’s having seizures that don’t look the way we expect, or when sensory inputs get all mixed up for her. My mom and I started talking about how to help her with building a vocabulary about feelings and sensations…which is, let me assure you, an odd thing to talk about.
With all of that in my mind, I had a sober, bittersweet thought: there is a part of me that wants desperately to protect her, to advocate for her, to keep her from hurting, and yet another part of me knows that it is through my own struggles and pain that I’ve learned and grown. Funny, isn’t it, that we want so much to shield our loved ones from even those instructive experiences that are unpleasant. Growing up isn’t always fun.
My sister has a couple of prescriptions right now to help control her epilepsy. She’s still having a fair number of seizures. When I was with her last, I saw enough to think they may be happening around once per hour, on average. Some of Lily’s seizures are absence seizures that are over pretty fast and some of them are myoclonic (twitchy muscles) that are also fairly short (less than two minutes). Thankfully, the tonic-clonic (a.k.a. grand mal) seizures are rarer for her these days, and I don’t think she’s had a grand mal that lasted for longer than an hour during the last year. (Y’know, I just looked up the different types for the first time so I could use the correct terms. Somehow, I’d never actually done that until this week, despite having a clear sense of the different types of seizures that Lily experiences and having seen the emergency medical info cards my mom has prepared over the years.)
Lily has been through a lot of medications, either singly or in combination. She’s allergic to at least three anti-epilepsy drugs (one reason she’s got a medical info necklace), a couple haven’t worked or have had distinct side effects (ooh, the drooling one was bad – poor kid drools enough, and she was horrified and kept insisting on changing her shirt), and she’s taking more than one drug right now. I’ve talked briefly with Mom about the ketogenic diet, and while we’ve laughed at Lily’s probable joy at getting to eat a lot of cheese, we have other reasons to think it’s not a good option right now. My parents have considered surgical options to try to help get the seizures under control, but apparently only half of Lily’s classmates who underwent surgery saw any benefits, and any surgery is a big deal for Lily. (NB: I’m not sure how the idea of “surgery” breaks down with respect to implanting a vagus nerve stimulator versus performing a corpus callostomy; I think it was mostly the former, but it’s been at least, oh, 14 years since the topic first came up.)
Anyways, the reason I picked the title of the post is that, well, I’m a bit worried that Lily’s experiencing side effects from one of her current drugs – Keppra. She’s sort of turned into this evil little creature – demanding, angry, lots of screaming, tired, cranky, hungry – more so than in the past, and frequently during meals, or when I call to talk to my family and everyone is home. We’re talking straight-up screaming obscenities and other aggressive behaviors – throwing crayons, banging dishes on the table, repeating phrases expressing irritation over and over and over and over (despite repeated attempts to help her), interrupting conversations loudly and rudely, screeching with no apparent trigger. What really concerns me is that she seems to have this really horrible behavior at dinner, but within ten minutes of leaving the table and moving to the library room or living room, she’s the exact opposite: charming, cheerful, playful. Such a rapid mood swing is startling to watch. Beyond this, her laughter during these intervals sometimes sounds more manic than happy. My parents and I haven’t been sure what’s background behavioral, what’s “other seizure” behavior, and what’s frustrated inability to communicate. Now we’re talking about how much could be side effects.
Lily can’t really articulate a lot of her physical sensations or her emotions, so I’ve started poking around online to learn more about what it’s like to take Keppra from people who can, and it has, quite frankly, upset me even more. Otherwise calm, happy people report having started Keppra and finding themselves full of sudden rages. Some of them say that after being on Keppra for awhile, this went away; others have reported needing to take other drugs to control the Keppra symptoms! I’m not clear on whether people taking Keppra have experienced long-term symptoms, although I’ve done fairly minimal research thus far, but it’s something that’s on my mind. Could Lily’s runny nose during my visit be her medication triggering inflammation? Does she have a sore throat, and screams at dinner because of that? How the hell could we even determine whether she’s “just” exhausted from overnight seizures versus lethargic the way that her older sister gets when struggling with depression?
And if it really is true that she’s experiencing side effects, is it worth it to change her drug regimen…yet again?
I’ve had an awful lot of conversations with people over the years about various aspects of life with Lily and my concerns for her continued health and well-being. I think I’ve discussed the effects of puberty on her life fewer than five times, and most of those were quick mentions. It’s a topic that has reappeared suddenly in our lives, and so I think it’s worth revisiting here today.
I think it was an aide in one of my sister’s classrooms who first provided a possible reason for the resurgence of Lily’s seizures at age 13: puberty. The theory goes that women metabolize faster during their menstrual periods – their bodies just process food, drugs, waste, etc. more rapidly than during the rest of their menstrual cycle. In young women who take drugs to control neurological disorders, like Lily’s anti-convulsants, this means that the carefully developed plan for administering medication…breaks down. The plan (as I’ve gathered; I’m not in on the neurologist visits at this point) is generally to keep the level of the drug constant in the body. Doses are given on a regular timeline, such that the new dose quickly picks up where the last one fades out. (Many of us use analgesics this way – ibuprofen every four to six hours, for instance.) Well, assuming this “faster menstrual metabolism” idea is correct, the schedule breakdown translates to drug levels being too low before the next dose can be given. For Lily, this means seizures.
Lily’s neurologist didn’t really think highly of this notion. I found a news piece supporting it in The New York Times, in one of their science pages, years after the conversation. Either way, around the time she was 13 and I was 16, Lily entered puberty. Higher seizure activity in general occurred during the next few years, some of which appeared to be related to actual menstruation. (Thankfully, this was rare, and seems to have stopped. I say thankful because Lily has a fascination with the feel and sound of crinkled plastic, and with diapers. She went through a phase of insisting that her baby doll wear diapers, which she utterly destroyed while handling. Anyways, she couldn’t really tolerate feminine hygiene pads without thinking of diapers and thus playing with them. I can’t tell you whether I’m glad she has periods or not, or unpack the complications of what that means about Lily as a person with desires, needs, and ideas of her own; I’m just glad we all are spared the strangeness of keeping her clean and healthy.)
Flash forward to right now. I’ve been asking my parents whether they track Lily’s seizures, and I guess they’ve tried it but nothing much has come of that effort. This past Friday night, I called home to see how everyone was doing, and was told that Lily was sleeping in the wake of a pretty big seizure. I was preoccupied with my own emotional discomforts, and the prospect of a weekend snowstorm that derailed my plans to visit a friend, and didn’t think too much of it. Until the next day, when I realized that I was in the throes of PMS (hence the preoccupation with needing to see people I like – especially when we had plans involving chocolate!), with the acne and wild emotions that that entails for me. A couple of days ago, talking to my mom about something, I asked if Lily had acne that day. My hunch proved accurate – Lily had bad acne, and it was disrupting her life. (She gets very inflamed pimples that she sort of paws at, since she doesn’t understand what’s going on, can’t see what’s going on, and is experiencing discomfort.) I pointed out that my period had been early during the time that I was home with her, and observed that the two of us might be on a similar hormonal schedule. (This is very amusing, as we tend to get sick at the same time, even living thousands of miles apart. And call home at the same time. And then some.)
I (lightheartedly) recommended that my parents and Lily’s assistants feed her chocolate-covered peanut butter pretzels, a particular favorite of mine when I’m craving salt and sugar simultaneously. Lily loves peanut butter pretzels. (Yay sisterly advocacy!) But it’s really a serious issue, and I feel like I’m not sure what to say, other than to remind my parents of the way that I am, in hopes that Lily and I are similar enough that what comforts me could comfort her. It’s beyond irritating that we have no ready solution for the fact that her anti-convulsant dosages break down, and that the neurologist has been more dismissive of the idea than supportive. It’s heartbreaking to me to think of Lily experiencing a grand mal seizure, or a few, roughly every month…in addition to the absence seizures and assorted other relatively small seizures she already experiences every single day. I know we all have learned to process them, in our own ways, over the years, but that doesn’t mean it’s easy. It’s that much more frustrating to realize that the small comforts that I can grant myself are hard to grant to her, since she may not have the language to describe pain, discomfort, or confusion.
And that’s just one aspect of puberty! Convincing Lily to wear bras was a huge battle for my mom. We’re not sure if she has any real sexual drive, but if she does, what does that mean? We’ve all noticed that Lily likes to talk to men – like the time my mom told me she was “flirting” with the ambulance attendants on her way from one hospital to another – but we’re not sure what that means. (Lily is incredibly social anyways.) Sometimes Lily tells me about her friend, a young man who is and has been in some of the same programs as Lily. She tells me that he loves her. Does she know what that means? I know she associates the word love with us, her family, and some of the people that she enjoys being around, but does she have a concept of romantic love?
Can my parents, Lily’s team, and I actually be supportive of Lily’s adult desires? Will we even recognize them? Will she?