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The perfect timer!!!

6 Sep

So I was perusing through Target this morning, holding a giant latte because…well…coffee…and making sure I got things like Toilet Paper and Dog Food, when I wandered into the kitchen section because I have grand designs for our kitchen (and by “grand designs”, I mean just thought-intensive organization to allow Maura both independence and yet learn better eating habits by force.)

ANYHOO…

There I was, accidentally leaving my giant latte on shelves and having to go back for it, when I found myself in the kitchen utensil section.

I thought “Gee, what I really need is a good timer for Maura, you know, to help her understand how long it takes for something to charge….yeah…but a regular timer won’t do. I need one of those ones they have in all the resource rooms, with the red section that gets smaller…shame they don’t make-HOLY COW IS THAT WHAT I THINK IT IS?”

 

LOOK! LOOK WHAT I FOUND PEOPLE!

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LOOK AT EXACTLY WHAT I WAS WISHING FOR!!!

I scared the other moms with giant Starbuck’s cups as I squealed in delight and grabbed the last timer there in the store. On clearance even! So if you need one of these babies, RUN TO TARGET. And maybe, while running there, grab yourself a giant caffeinated delight. You deserve a treat darling.

 

 

You know, it’s not just Epi-pens

24 Aug
free stock photo via pixabay - image of different medicines

free stock photo via pixabay – image of different medicines

The interwebs are gasping over the 400% price hike in Epipens.

“I need to pay HOW MUCH now?” is the collective statement. Along with “WTH? This is WRONG!” And now, everyone is reporting on it, commenting on it, sending out petitions to stop price gouging this life saving medicine…

Listen. I get it. I totally get it. Seriously. I totally and completely get it. But there is a small part of me that’s like “Dude, really? Where was the national outrage when my daughter’s meds went up?”

Our sad tale started when our daughter was diagnosed with complex partial seizures at age four. Maura had her first tonic-clonic (aka grand mal) seizure on horseback. Because we like to keep things interesting. One EEG later and I found myself the proud owner of a book on childhood seizures, a bottle of daily medicine, and the “epipen for seizures” – which was a tube of valium to be given rectally if she had a seizure lasting more than five minutes.

I had two thoughts – first, I was going to need a bigger purse. And second – Rectally? Are you kidding me? I am NOT up for this!

At first, things went smoothly. Actually, things went fabulously. The medicine helped Maura out tremendously – not only controlling seizures, but her balance improved 150%, her communication improved, her memory improved (the spot that came up glowing for seizures in her brain was the area between memory and motor planning.)

After a while, our insurance decided that the bottle of Trileptal Oral Suspension was a “long term med” and therefore, we had to go on their subscription plan, MedCo.

Now, I still loathe MedCo with the fire of a thousand suns. Because wow, way to may things difficult for us. They’d send us the three glass bottles of Trileptal, each in it’s standard flimsy cardboard box, but then with nothing inside the bigger box to prevent them from rolling around. One time, I got two regular bottles and one broken one. Another time, the box was leaking by the time it hit FedEx so they just sent it back to MedCo. These instances required the usual “jump through fiery hoops explaining how we needed to be allowed to pick up a bottle at a pharmacy because we weren’t going to get replacements in time” routine. I learned which pharmacy in four towns actually stocked it (one…only one…the rest had to order it.) But this was okay because Maura had no real side effects on Trileptal. And trust me, Anxiety Mom read the WHOLE list of side effects so she’d be aware of them.

But then there was the day I opened up the box to get a new bottle out and found myself staring at not at boxes labeled “Trileptal” but their bland, beige, generic version.

We’d been switched to the generic. Without even being told. I called the neurologist in a panic, who said it should work, but if it didn’t, he’d write a script for Trileptal, no substitutions. We gave the generic three months – using all three bottles – to see if it worked. While seizures were prevented, she had horrible mood swings. To the point that her teachers (who didn’t know of the med change) asked “What the heck is going on?” and when I told them, they offered to write letters for me to the pharmaceutical company. The doctor wrote us the Trileptal, no substitutions prescription. MedCo was all “Nope. We don’t cover the name brand, just generic. So you have to pay the cost difference if you want name brand.”

The eighty dollars per shipment was worth my daughter’s happiness.

That was in 2010.

In 2011, we moved to Ireland, where since she was instantly noted as disabled, the government would cover any of her long-term medicines. We just had to pay out of pocket for the first bottle of Trileptal and Midazolam (which replaced the rectal valium “epipen” and was an oral dosage – yeah, I was ALL over that!) The out of pocket cost for both meds was eighty-something euros, or about $120 US dollars.

For both.

I paid that price once. After that, Maura’s meds were covered. Once in a blue moon, we’d need a prescription for, say, amoxicillin, and I’d laugh over the price. Seven euro. The first time, I thought she said “seventy” and was okay with paying that much. Because I was used to American pharmacy standards. She laughed and said “I’ll take seventy if you’re willing to give it to me, but no, it’s only seven.”

In 2013, we moved back to the USofA. First on our lists of things was getting seen by a doctor so we wouldn’t have a gap in meds. We got a prescription, I went to refill it, and was told my co-pay – CO-PAY – was $235.

TWO HUNDRED THIRTY FIVE DOLLARS. AMERICAN.

For ONE bottle of Trileptal that lasted ONE month.

Co-pay.

$235.

One bottle.

Co-pay.

Monthly.

But, the one bottle a month wasn’t quite cutting it at her size anymore. So we needed two bottles per month.

There is NOTHING like standing in line at a busy pharmacy to hear the guy in the white lab coat go to ring you up and say “So you’re co-pay is….HOLY CRAP! That can’t be right!!!”

Yep. That really happened. More than once actually.

It’s amazing what you’ll happily pay when your child’s brain functions are at stake. Okay, maybe not happily, but you hand over the health savings account card with a sigh, and once again thank God that at least you have the ability to cover it. Because at $535+ a month for seizure meds, that’s over six grand a year people. I’ve bought cars for less.

And no, our insurance didn’t cover it outright because the medicine that prevented my daughter from having seizures wasn’t considered a preventive medicine. Because she already had seizures. But if I developed an ulcer from dealing with all this insurance malarkey, it would cover the cost of ulcer meds. Which really, was nice of them.

My friends were outraged with me over this, but the huge expense of seizure medication that skyrocketed over a three year time span never made national news. Or local news. Just my Facebook news feed. It wasn’t a national crisis, it just sucked to be me.

Yet, in my group of friends, I didn’t have it that bad. My friend has a son with hemophilia. She meets her yearly deductible of out of pocket costs every January, because her kid’s life saving medicines average $17,000 a month. A MONTH.

My Fiat cost less than that.

Another friend needs super-special meds for a super-rare issue. They also are thousands of dollars a month.

So if some of us aren’t showing significant outrage over the hike in Epipen costs, it’s because we already know that we’re being gouged to death for life-saving medicines. You’re looking at $400 a year for epipens? My co-pay for ankle-foot orthotics for my daughter was $700, so her feet could develop in proper form and she could walk straight and not need knee surgery later on. That $700 came after insurance paid the first $1000.

Trust me, any parent of a child with any sort of special needs completely understands medical costs. We’ve been living that dream for years. You’re just catching up.

And trust me, we empathize. Oh lawd, we empathize! We will totally sign your petitions and say what a disgrace this all is.

We just wish that some of that outrage would benefit us. Because we’re just trying to save our kids lives too. Because this isn’t an epipen problem. This is a nation medicine crisis, and it’s been going on for years. You’re just the latest victims.

 

 

A peek into life with Maura – communication skills

19 Aug

It was Miriam, big sister extraordinaire, who stated this truth – “Maura doesn’t have a speech disorder. She has a communication disorder.”

Exactly.

There’s three main branches of speech disorders – articulation, phonological, and apraxia.

We all are aware of articulation disorders, where your R’s sound like L’s or you have a lisp. Both of my boys had articulation issues as small creatures. It was okay though, because Mom had the mother of all speech problems herself, her siblings all had minor articulation issues as well, and even though Collin tried to disguise it by just dropping all S’s when possible (because my oldest has always been the most aware kid ever, and knew he wasn’t saying S’s right, so just skipped them…yeah…) needless to say, I was the person signing her child up for kindergarten and asking about speech therapy.

Miriam had a phonological disorder – to put simply, it means that she left out or replaced letters in words. “Orange juice” became “oran ju”. “Waffle” was “wawa” (not to be confused with Wawa, the fabulous convenience store on the East Coast.) Even to my trained ear, she was intelligible maybe 75% of the time. However, once she began to read, it cleared up.

I myself can remember my speech problems. My S’s came out horrible, my R’s were lazy, I couldn’t pronounce S, SH, CH, J’s, Z’s, and soft G’s. When I asked my mom if I sounded like Miriam, she was all “Oh no, you were way worse.” But eventually I conquered it and retrained myself on how to pronounce all those words and my kids speech therapists would fawn over how well I speak now.

With Maura, I eyed her, wondering which speech issue she’d get, articulation or phonological? Well, being Maura, she decided to go a different route.

Apraxia. Childhood Apraxia of Speech. Which, in a way, was fitting, as she has all sorts of motor planning issues. So why not speech motor planning issues?

But she also has problems with communicating. Things get jumbled up. She doesn’t always get concepts. Even yes and no questions can be hard.

Like yesterday, she kept asking to have her hair tied up.

“Hey Maura, do you want your hair short or long?” I asked.

“Yes.” was the answer I got.

“Do you want your hair short like Miriam’s?” (Miriam is currently sporting a pixie cut and was sitting right there.)

“Yes.”

“Do you want your hair long like Mom’s?” (My hair is past my shoulders.)

“Yes.”

Well, that clears things up, doesn’t it?

Then last night, we had pizza (because when Mom’s been up since 4:30 am, pizza is sometimes what’s for dinner.) Maura had her favorite spicy chicken pizza. At one point though, she went “OH! MY EYES!” and had both hands on her eyes as she stumbled around the table. I laughed, thinking she was playing. But then, she started crying.

“My eyes! My eyes!”

She balled up her fists and pressed them into her eyes, but then she started crying harder, then screaming. I tried asking what was wrong with her eyes, but all I got back was more screaming and “My eyes!”

I think what happened was she got something spicy from the pizza onto her hands, and then rubbed her eyes, spreading hot pepper or whatever into her eyeballs. But then she kept rubbing her eyes, which made her cry more. So there I was, racing around, shouting for baby wipes, trying to rinse her eyes a little with a wet washcloth while simultaneously scrubbing her hands with baby wipes.

I didn’t know how to explain to her that she must have some spicy oil on her hands from her pizza, because she might only understand “Pizza makes your eyes hurt, pizza is bad.” She loves pizza. I don’t want to ruin it for her for life. So I just cleaned her hands well, wiped her eyes with a dripping washcloth, and soon her eyes were feeling better. I was glad that it all happened around me, that I hadn’t been in a different room when it happened because I’d then have to worry that maybe somehow, she got some sort of odd chemical in her eye (even though we try to keep all hazardous materials out of reach.)

But this is just part of our life with Maura. I joke that I go around sounding like Mr. Rogers, because I simplify my speech so much for Maura. I want to make sure I say words she understands. When I talk to her, I am always making certain I’m phrasing things in a way she gets. I will repeat myself with her constantly because she has problems processing stuff, so repeating things helps her get it all. And then, I give her time to process, and figure it out. “Give her ten seconds” I tell people.

Having been the child people couldn’t understand, I know that my daughter is working hard to communicate with us. I also know that she sometimes can’t. I can also state honestly that Maura is better at communicating her feelings than I am. Way better. Really, I should take some lessons from her on it.

That’s sort of the nature of things here though – for her to communicate, everyone around her needs to be on board. Luckily, we’re all invested in her communicating, maybe because we all went through a phase where no one could understand us either. Maura communicating better is a win for her, a win for us, a win for the family. Really, there is no losing here for anyone.

So if you meet us and I sound like I am interpreting for Maura or yourself – it’s because I am, so that someday, maybe she won’t need me to do that.

 

 

 

 

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