Part 2: My Child Has a Serious Invisible Disorder.

One very long, serious, slightly funny newsletter. 🖤

Welcome to Shame Sandwich, where Megan feels equal parts shame and glee in sharing hilarious personal thought rants every Friday. Sometimes on shame, sometimes shame infused, and other times, nothing to do with shame. Enjoy responsibly.

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***If you haven’t yet read Part 1, here it is. 🖤

From November 2023 to March 2024, I lived in a state of extreme stress.

From the outside looking in? Everything carried on normally enough.

I worked. I mom-ed. I paid the bills. I showed up when I was supposed to show up. I took care of shit I was supposed to take care of.

But internally?

My daughter’s seizures were never not on my mind.

That nagging internal fear that they would get worse, and turn into the Tonic Clonic seizures weighed heavy on me.

And then there was the decision, what to do about them?

Right from that very first phone call from the nurse, I had the medical establishment pushing medications on my daughter.

This isn’t some small time to Tylenol or not to Tylenol bullshit.

We’re talking about some serious heavy-duty medications that oh, you know, only impact your growing child’s BRAIN and other potentially serious side effects.

Do I give my daughter seizure medications, or do I go a more holistic route?

That question tormented me.

But I couldn’t just sit there and wallow in my tormentation, I had to make a fucking decision. And sooner rather than later.

And if I made the wrong choice?

My daughter’s future was literally in my hands.

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And so, I dove deeeeeeep into mama bear research mode. I poured over anything and everything Absence Seizures.

Technical articles that normally would leave me scratching my eyeballs out and writhing on the floor in “Too Much Information, Cannot Remember Any Of It” mode, had me coming back for more, desperate to figure out what to do.

In short, the medical field “really doesn’t know what causes seizures” or how to cure them. Their blanket solution is to medicate the symptoms away. For some this “works” and for others, it causes a plethora of serious side effects.

However, in my research, I discovered that what I thought was a fad diet, the Keto (Ketogenic) Diet, was no fad diet at all. It was actually developed in 1921 at the Mayo Clinic to treat, wait for it… seizures. And it is clinically proven to be about as effective as medication in treating seizures. To say I was shell-shocked would be an understatement. I finally had my first glimmer of hope, and I hung onto it tighter than a squirrel hanging onto its best nut of the season.

Duh… OF COURSE DIET IS GOING TO HAVE SOME ROLE IN THIS!!!

We are what we eat.

Invigorated with this information, I showed up to my daughter’s next neurologist appointment with pages of notes and questions and prepared to lay out my requested plan of treatment: Diet Therapy.

Much to my IMMENSE relief, the Nurse Practitioner Nuerlogoist, Ashley, was on board. She was impressed with my well-researched questions and gave the official green light for diet therapy with a diet specialist for seizure patients.

That is until Dr. Cunt, the Neurologist Doctor overseeing her/us, got involved.

That man refused to let my daughter see the diet therapist.

REFUSED.

😤😤😤😤😤😤

He said, conveyed via Ashley to me: “Medication is the only first recommended seizure treatment” so you cannot do diet therapy.

Mama Bear Megan was enrageddddddd.

Not only had Dr. Cunt never even met with me or my child face to face, but when I requested he show me documented clinical evidence for why medications were the first and only treatment, he threw a light AF study in my face, to which I promptly sent him a study back, by the same organization that published the study he showed me, might I add, that clinically showed the positive effects of diet therapy for seizure patients.

He still point-blank refused. Through poor Nurse Practitioner Ashley, of course.

Even though I, the parent, was requesting a treatment that was MEDICALLY USED TO TREAT SEIZURES!!!

To make the bile rise even further in my throat, I did some digging and discovered, through the government website Open Payments, that this Dr had earned thousands and thousands of dollars from pharmaceutical companies as compensation for the varying consulting work he’d done for various pharmaceutical companies.

Even a half-brained walnut could see that he has an interest in pushing pharmaceutical drugs over alternative non-pharmaceutical treatments.

EN-RAGED.

You better believe I documented that shit and sent it their way.

But it didn’t do any good.

I was still told I was shit out of luck and free to seek medical care elsewhere.

FUCK YOU AND YOUR MONEY, DR. CUNT.

Fuuuuuuuuuuuuuck you.

🖕🖕🖕🖕🖕🖕

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Armed with dangerous levels of stress and mama bear rage, I found a new level of strength and said ok… I’m going to do this diet therapy on my own, then.

And yo… this shit was hard.

My daughter is a piiiiiiiiiicky eater on a good day.

If she had it her way, she’d survive on chicken nuggets, pretzels and gold fish and ok, fruit (and for the record, of course I didn’t just feed her that. She ate a pretty healthy diet, or so I thought…).

Anywho.

Rapidly changing our diet to be low carb meant cutting out 98% of the things she loved and replacing it with 100% of the things she hated.

If I thought life had been hard before now?

JESUS SLAP ME SILLY THIS WAS AN ENTIRELY NEW BATTLE OF THE WILLS.

It was torture. My poor daughter haaaaaaaaaated being on this diet.

Hated, hated, hated, hated, hated, hated it.

Breakfast = Fight, complain, dig in heels, hate me.

Lunch = Fight, complain, dig in heels, hate me.

Dinner = Fight, complain, dig in heels, hate me.

Not to mention my food bill EXPLODED each week.

how long does it take before you suffocate from stress?

With cutting out about 98% of the prior foods we ate and doing the low-carb diet, I saw about a 50% reduction in seizures, from a peak of around 40 absence seizures per day around Christmas time to around 20 per day.

Which was GREAT, but then it just stagnated.

Never any days with zero. Or even single digits.

Partly, I’m sure, because we weren’t strictly following Keto.

My daughter flat refused to eat certain foods, despite my damnest efforts, and so there we sat. Half keto. Which if you’re not in full ketosis… you’re not really Keto.

We had, however, eliminated a LOT of other highly processed foods and added sugars from her diet.

When I say I was HORRIFIED by checking the labels of all foods that I had previously regularly bought, I was HORRIFIED.

The amount of processed, fake, added sugar shit that is in most foods today is insane.

What I had naively assumed was healthy based on the buzzwords plastered on the packaging turned out to largely be RATSHIT. 🐀

So, I presume by cutting out a lot of the processed shit that had been consumed before, it helped reduce the toxic load in the body, and reduced the seizures by about 50%, even though her body wasn’t in true Ketosis.

Anywho.

Around this time, you know, when I found out my only child had absence seizures and the medical community would leave me out in the cold with nothing but a threadbare toga, and mealtimes were tantamount to torture, I also discovered mold in my daughter’s bedroom.

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Excuse me, mold???????

😱😱😱😱😱😱

JUST TAKE ME OUT BACK AND SHOOT ME, WHY DON’T YOU?

EXCEPT WAIT, NO, YOU CANNOT DO THAT BECAUSE I’M ALL MY DAUGHTER HAS.

SO, SLOW DEATH BY STRESS IT IS THEN. GOT IT. GREAT. CARRYING ON.

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Mold = Bad.

Mold can cause seizures in people (yes there’s tons of research I did, and yes it doesn’t affect everyone the same).

My daughter + Mold in her room = Absence Seizures?!?!?!?

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To say I was one thread away from having a full-blown manic meltdown would be a lie.

I’d lived my entire adult life in this chronically stressed-out induced state. 😂

hysterical manic laughter

😭😭😭😭😭😭

But this time?

This time it was affecting my *daughter*.

And my chronically stressed-out induced state went to another level of chronically stressed-out induced state.

And so, with stress threatening to drown me, I did the only thing I knew how to do:

Just. Keep. Swimming. Going.

And so I did.

Within 6 weeks of finding the mold, I’d moved out of that apartment, started a better job, and moved into a nicer (mold-free) apartment.

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Now……………

Here’s where I must pause and tell you those were some of the ***MOST*** stressful weeks of my life.

So of course I have to re-live it with you. Cliffs notes version. 😅

1. Daughter was diagnosed with a serious illness. Life completely turns upside down. Medical community abandons me. Almost zero support in life.

2. Megan does serious research and makes an informed decision to try the Keto Diet. While it helps the seizures, it causes WW3 to erupt on the homefront.

3. Megan discovered mold in her daughter’s room. Mold can cause seizures in people. Megan freaks the fuck out even more. Apartment property management refuses to take it seriously and brushes it off.

4. Megan begins to search for apartments to move to. Freeeeeeeeeaks the fuck out with stress realizing there is a zero percent chance she can move anywhere “decent” in the school district she wants. Will not compromise on school districts. Stuck. Panic. Stress. So much stress.

5. A former colleague reaches out with a job opportunity. Holy fucking hell. This could change everything. But it’s also scary, scary, scary. New role, not fully ‘qualified’. Interviews are stressful AF!!!

6. Offered the job!!!!!!! Have to tell Toxic-with-a-Capitol-T current employer that she’s leaving in 2 weeks. Terrified. But does it.

7. Hired a mold specialist to inspect the apartment. Megan writes the world’s best-ever letter to apartment management telling them, professionally, she will ruin them if they don’t let her out of her lease ASAP. Internally, Megan is TERRRRRRRIFIED what will happen if they push back. Megan hate hate hates conflict. It worked! They will let her out of her lease. She will be out in 4 weeks. She needs to find a new place to live, or they will be homeless, holy fuck.

8. Megan furiously apartment searches to find a new home for her family. Finds a great apartment that maxes her budget (stress, stress, stress) but is in a great school district and a great community and location and available when they need to move. Ok. Done. Lease signed. Holy fucking shit I cannot fuck up this new job!!!!!!

9. The last day of her former job was Friday, March 8th, they moved on Saturday, March 9th, and Megan started her new job on Monday, March 11th. Stretched to the absolute maximum, maximumm maximum stress capacity!!!!!!!

And all of the above, of course, with my daughter having absence seizures every single day. Each one a nail of stress straight to my heart.

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YIPPITY YIKES THAT WAS A LOT OF STRESS CONDENSED INTO A NEWSLETTER.

If you’ve read this far… thank you for sticking with me. 🥲

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And I’m also shamefully aware that I just sprayed that stress all over this newsletter like an un-manned fire hose spraying willy nilly except it’s not willy nilly it’s serious as fuck when that bastard is squirting out at 300 psi and what I’m trying to say is ARE YOU OK AFTER READING THIS STRESS INDUCING NEWSLETTER?!?!?!

Damnit, I’m shouting.

Whew.

So, how are things going in present-day, December 2024?

Meh.

If earlier this year was 0 stars I’d give present day a solid 3.4 stars.

Mightly improved but also not that fantastic. 😅

Amelia still has absence seizures every day. I still wonder if I’m making the right choice every day to keep trying the holistic route.

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We’re not doing Keto anymore. Thank the big belly buda because that was rougher than dry sex.

Instead, I know of families who have seen great improvements (or complete elimination) of absence seizures by cutting out gluten/dairy/nuts and most processed shit and so that’s what we started a couple of months ago.

Cutting out gluten and dairy is about as fun and easy as frolicking naked in Antarctica but hey. Somehow, you find a way to do it, you know?

Even though this new “diet” would be thought of as hella restrictive to most, it allows WAYYYYYYYYYYYYYYYYYYYY more options for my daughter than Keto did, and her happiness increased massively. Thank GOD because I think she’d just gotten her hands on the nuke codes and shit was NOT looking good.

However— she still haaaaaaates the fact that her friends can have whatever they want and she can only have diet-approved options. And she regularly will lie to me about eating things she’s not supposed to be eating at school and yes I know the truth because that child cannot lie to me without it being written all over her face god bless her soul and god bless my soul because I might die soon if I have to put up with this lying for much longer because what good is having a diet if SHE’S FUCKING IT UP BY SNEAKING GLUTEN AND DAIRY FOODS AND FML. I can’t have a proper baseline if she’s eating those things. The good lord is testing me and I despise it and will be suing the good lord for being a VERY BAD LORD!!!!!!! ← y’all. This shit wears on me. Massively. Can you tell? I can tell.

As for the seizures, they’re still about the same as before (READ STRIKEOUT ABOVE!!!!! 😭), around 20 +/- or so per day (those are the ones that I’m for sure seeing. I’m sure there’s more that I don’t catch, obviously when she’s at school, too). However, her frequent headaches have VANISHED! Which is incredible. She was basically having weekly to daily headaches all the way up to horrible migraines before and they are GONE!!!! Her frequent headaches had always been so “normal” (and she’d been that way for years, which sounds terrible to say) and I didn’t realize how un-normal they were until they stopped. Soooooo grateful. 🙏

So I know for sure the foods we’ve cut out were inflaming her body.

It’s just this issue with her sneaking shit junk food at school that is making me go insane. Would her seizures be reduced if she didn’t do that?

HOW THE FUCK DO YOU STOP A KID FROM LYING??????????? ← Me, shamefully ashamed to even write that. Talk about feeling like a mom failure of the highest order. Not to mention all of the nuance. My poor child. But also. Lying is not ok. 😭😭😭😭😭

Anywho.

Things are more ‘normal’ now, at least. And I am soooo grateful that we’re in our new apartment, I’ve got a better paying job not to be confused with a less stressful job and I’m doing the best that I can. And I know Amelia is coping the best she can, too.

Living with an invisible disorder is hard, folks.

And because Amelia literally BLACKS OUT when she has absence seizures, there’s such a heartbreaking social dynamic to this that rips my heart out, too.

On the outside, she looks “normal” to the unknowing eye (although I can immediately tell if she’s having one even if she’s sitting just as she was a moment before, her eyes just go… blank 💔😭) and since sometimes she will also walk or move around while she’s having one, it’s caused a lot of very embarrassing situations for her.

One time, she was walking in her school hallway, had an absence seizure, and while “zoning out”, she walked into the boy’s bathroom! 😳 And when the absence seizure ended and she realized where she was, she was absolutely mortified. That just absolutely SHATTERS my heart for my sweet baby.

There’s so so so many situations where we’re out and about in public or she’s interacting with kids and she “looks” normal but has an absence seizure and the person she’s interacting with of course doesn’t know what’s going on and thinks she’s ignoring them.

And Amelia is sooooo self-conscious when she’s had one in public (about 50% the time, Amelia can tell when she’s had one after it ends). And I just feel awful that she feels that way. 😭

I do not recommend absence seizures. 0/10. Shitty, shitty, shitty. 👎

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Now I have to tell you something that makes me very uncomfortable:

I FEEL VERY UNCOMFORTABLE RIGHT NOW. ← that was what I had to tell you. ← JK. 😂

Part of the reason why this is so hard for me to write about is because… I feel guilty for talking about absence seizures when a) it’s not even ME who has them and b) there are other people who have had their children go through worse things.

Which I know shouldn’t make me feel any less worthy of sharing my thoughts and burdens but it’s the truth of how I feel.

I FEEL SO GUILTY FOR FEELING WRECKED OVER MY DAUGHTER’S ABSENCE SEIZURES WHEN SOME PARENTS GO THROUGH WORSE.

And that really gets to me.

The cunt voices in my head scream at me to stop taking up space. To suck it up and carry on. To minimize my feelings. To never make it about me. To save space for the ones who have it worse than me.

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Save space for the ones who have it worse than me.

OOOF yes that’s the one that cuts me the most.

ALLLLL the guilt about taking up space.

And then the shame for wanting to take up space.

I WANT TO TAKE UP SPACE, GODDAMNIT. 😭

→ I want you to see me. And get that I am still a stressed out heifer this is still a lot some days despite my expert compartmentalization skills.

-I want some goddamn validation that what I’ve gone through isn’t some walk in a rose-filled park but instead a dark perilous journey not for the faint of heart.

→ I want to be told good fucking job, Megan, I’m proud of you.

Yikes I am desperately holding my fingers back from deleting the above exchange ← which is impressive because it’s hard to finger fight yourself and come out on top because it sounds shameful and takes up all of the space.

But how can I ever set the proper example for my daughter if I cannot teach her one of the most important lessons of all?

It’s not shameful to take up space, baby girl. It’s not shameful to take up space. 😭🙏

Christ that’s a hard one for me to mud wrestle. Shame is a feisty fighter.

But.

I have GOT to learn to take up space and be comfortable voicing my own feels and needs if I’m going to live the kind of life that’s on my vision board.

And I can’t think of a better way to teach my daughter that, then to lead by example.

Here’s to taking up space. I hope this inspires you to do the same. 🖤✨🙏

-M

P.S. - Not going to lie because I’m not my daughter ← yes we went there 😂 I am VERY nervous about sharing my decision to do a holistic approach first to treating my daughter’s absence seizures. I know that health care can be an extremely controversial topic, and I beg of you ask that you please respect my choice, and not assume I’m a bad person for taking this route. I do not make these choices lightly or without research, trust me. Let’s keep the comments respectful of everyone’s right to choose what they feel is best. I’m not anti-medicine, I’m pro-healing. 🙏

P.P.S - Pretty sure this was my longest newsletter to date and I’m equally parts horrified and ashamed that I just made you read this all. You are my hero. 🥹

P.P.P.S - Of course, I shamefully hope this doesn’t go out to hoarsless crickets but even if it does, the very act of having the courage to take up space feels pretty amazing. ✨

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