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Reboot, Take Two

It has been exactly one year since a reboot was done with Aria’s medication, Haleigh’s Hope, and with that, just less than one year since seizure control was achieved. Over the past 10 or so months, she has only had a seizure (no more clusters!), if she eats something she’s not supposed to. In January 2016, I started her on a very strict clean eating diet, and discovered a handful of specific food triggers. The combination of diet and whole plant CBD oil has proven to be extremely beneficial in Aria’s treatment.

However, these past couple weeks she had some unexplainable seizures (no obvious triggers), so today I started a reboot. Sometimes a buildup of CBD can occur on the receptors in the brain, which can lessen its effectiveness, and it is suggested to stop dosing for 2-7 days, and then restart at the starting dose; working your way back up to a dose that provides a level of control. Last year, Aria was on 1.75mg/lb of CBD, and seizure control seemed to be slipping away after making multiple changes with no avail. After doing a reboot for seven days, she restarted Haleigh’s Hope at the starting dose, 0.25mg/lb, and was then able to achieve seizure control at 1mg/lb.

Since July 4th of last year, she has been on that same dose, and once again I’ll do the reboot for about a week. The reboot timeline is tentative on seizure activity. If seizures become too frequent or atypical, she’ll be restarted immediately at 0.25mg/lb, and thus begins the two week intervals of increasing by 0.25mg/lb to find control once again. It is possible that she may end up being on a lower dose, as is what happened last year, a decrease by 0.75mg/lb, but I’m not counting my chickens before they hatch.

All in all, Aria would not be doing as well as she is, with phenomenal seizure control and leaps in development, if not for Haleigh’s Hope and the amazing team behind it!

Seeing Your Child with a Disability

Today was the first day I looked at Aria, and saw a child with a disability, and it broke my heart.

Let me explain:

Since she was diagnosed with intractable epilepsy and focal cortical dysplasia with polymicrogyria, I’ve always known that she was going to have a learning disability, in the least. It was just a matter of fact, and I accepted that a while ago. I’ve always done my best to work with Aria’s therapists and doctors to stay on top of her development. For her birthdays and holidays, I’ve always requested educational toys to help her along; trying to give her the best possible chance. And I still am, that hasn’t change. When she came off the pharmaceuticals over a year ago, began Haleigh’s Hope and finally achieved seizure control, the developmental gains she was making every week were astounding. She was becoming more and more like a neurotypical child, and she still is. Just in the past two weeks, she’s begun to sing songs and read along to her favorite books; all with approximate words and sounds, but amazing progress nonetheless. Up to this point, I’ve forgotten about her delay, and how it will affect her in the years to come.

I was talking to someone today about Aria, and they asked me when she’s older, how is her condition going to affect her getting a job and being an adult? Surprisingly, this caught me off guard, and I realized it was something I had stopped thinking about. Don’t get me wrong, it’s not like I’ve pushed her future education to the way-side and stopped caring, I’ve just let my guard down. Cannabis has completely changed our lives. It’s given her the freedom to just be a kid, and enjoy life, and it’s given me the ability to relax a little, actually sleep at night, and just sit back and watch her grow and expand her mind. It’s been so amazing, that I’ve forgotten to think about the future.

It took me a second to collect my thoughts when they asked me this. I said that her disability shouldn’t significantly affect her ability to “adult,” providing we can maintain this control as she grows up. I pondered this question, and my answer, the rest of the evening. As she was getting ready for bed, it hit me. I was watching her play in the shower, approximating the words for Twinkle Twinkle Little Star, as she lined up her ducks to walk the plank. I gawked for a moment, realizing how much she’s grown. Her hair is longer, and her facial features have changed. She looks older. As I’m looking at her, and hearing her sing, I see my child with a disability, and I cracked. I was heartbroken for the struggles she will endure as she gets older, and the bullying she may encounter; but at the same time, I was heartfull for the amount of progress she’s made in the past year. Yes, I see my child with a disability, but I also see my child who is finally developing more and more of a personality, who is learning everyday, who is excited for school and making friends, and I see my child, whom I will never give up on.

I do believe that with persistence and help from myself, her teachers and therapists, that she’ll eventually be able to overcome her learning disability. When I say overcome, I don’t necessarily mean she’ll become completely neurotypical, but rather, being able to live with her disability, accept herself for it, and be stronger because of it.

I see my child with a disability, but I also see my child persevering. So I have to thank the person who asked me that question today, because it made me stop and realize how much Aria has overcome, how much more we have to endure, and how bright her future can be if we keep at it.

A Crisp Autumn Morning, and Lots of Words!

We went for a nice walk this morning, and Aria labeled just about everything! Stroller, wheel, sign, what color the sign was (from 50 feet away!), grass, bird, squirrel, leaf, stick, car, house. It was amazing! Her receptive language has also improved, so much so that I can ask her what she wants to eat for breakfast: oatmeal, cereal, eggs, or pancakes, and every morning she chooses something different. 
Last night she had a couple friends over, Ronald and Malakai. She was beyond ecstatic to have friends over, so she started running up and down the hall, from the boys to me and their mom, Kai. After a few runs back and forth, Aria started talking to us and saying their names: Kai (Malakai), and Roll (Ronald). Kai and I looked at each other in disbelief, “What did she just say?!” They went on to play hide and seek, and Aria used her words to find them! 

It may not sound like much, but this is such a huge accomplishment for Aria, and I am ecstatic! It’s amazing to hear her speech improving everyday. She’s certainly working hard on catching up!

Seizure Control, Colds, and Preschool

It’s been quite some time since an update on Aria’s treatment; boy do we have news!

On September 26th, Aria was admitted to the hospital for a routine V-EEG, just for 48 hours, to see what her brain activity was looking like just over one year post-op, pharma free, and just using CBD. Prior to this visit, I had been recording an average of three seizures per night, all less than 30 seconds with minimal body movement. We were planning to move to Delaware with the new year so that we could get access to THC for hopefully better seizure control. We were in for quite a surprise this hospital stay.

We were to be admitted to the hospital at 3 PM, and I’m sure many of you are familiar with the slow admission process; we didn’t get to the room until almost 6 PM! Aria got hooked up to the EEG, the camera was on, and we sat down for dinner. The first night went well, she slept on the couch with me, and I pushed the button two or three times to mark seizure activity, one of them occurred when she woke up and the EEG tech had come in to change her head wrap. When the doctors finally came in that morning, they told me they didn’t see any push button activity on the EEG; luckily I had written down the times of each seizure so they were able to go back and look. Apparently, I accidently stood in front of the camera during each one, so they couldn’t see what was happening physically, but on the EEG nothing showed up as seizure activity – there were no abnormal electrical discharges. Okay…so now what? We stayed another night, as planned, to try and get better video of what’s occurring so we can determine what to do next.

That night, the 27th, I went and got my coffees (yes, plural), and a bag of nuts. I was going to stay up all night long, get these push buttons in, vividly describe every occurrence, and NOT stand in front of the camera (usually a monitor is on that I can see where I’m standing in relation to where the camera is pointed at her, but the one in this room wasn’t working). When my coffees ran out, I kept myself up by pacing the floor, and then taking advantage of the cafeteria opening up at 1 AM for the staff. By that time in the night, I already had three push buttons, one of which was a false alarm (I got a little trigger happy lol); I timed them, and noted all physical symptoms on the chart they provided. The rest of the early morning went well, I ranted on facebook, caught up on The Last Man on Earth, and researched seizures that didn’t show up on the EEG. There were two more push button events, and a third happened when the intern doctor came in to talk to us before the fellows came in.

Aria hadn’t woken up yet,  but it was getting close to that time. He sat on the couch next to her as we chatted about what I saw yesterday, and what I had seen so far that night. Then Aria woke up. She sat up, rubbed her eyes, and then her face started to change. She began whimpering, her eyes were wide, and she was a little stiff. I pushed the button, and the doctor noted the time. It was exactly what happened the previous morning with the EEG tech, and this time the doctor saw face-to-face what I had been seeing at home. I was anxious now to see if anything showed up this time, if I stood far enough away so they could get good video, and what are they going to say about this.

A few hours later the fellows came in to chat. I wish I could remember their names, it’s on the report I’ll be getting from our primary, so for now I’ll refer to them as Dr. A and Dr. B. Dr. A was always stern looking, hard to read. Dr. B came in with a smile, and she was the first to blurt out that, once again, there was no seizure activity. What?! They both said that I did great job with the push button, and the video was still iffy, but my written descriptions of the timing and physical symptoms helped them a great deal. Okay, so what’s happening to her if these things aren’t seizures? Is it happening deeper in the brain that the EEG can’t read it? Has she developed PNES from the trauma of surgery? Dr. A explained that they could very easily see on the EEG that with each “seizure” occurrence, Aria was changing sleep cycles, and it typically happened when she was going from REM to a lighter sleep, or waking up, either naturally or caused by a sleep disturbance. When it was caused by a sleep disturbance (me shuffling across the room, a noise outside, etc.), her body is so used to constantly seizing (well over 4,000 seizures in her lifetime), that these sleep disruptions are physically manifesting as seizure symptoms, when in fact, they are not seizures. What? Wow!

And now the icing on the cake (sort of):

So she very clearly wasn’t having seizures, per the doctor’s observation based on physical symptoms and the evidence from the EEG report. That’s great right?! No pharmas, no other drugs, just CBD and a brain surgery, and she’s got better control and quality of life than EVER before. Apparently that wasn’t good enough for Dr. A. Both mornings, the 27th and 28th, he would tell me that Aria needed to be on an FDA approved medication. I asked why. He didn’t have a real answer, just that what she’s using isn’t FDA approved. Okay, but it’s working. “Yeah, well we don’t know how safe it is, we don’t know the side effects, it’s not FDA approved, we don’t what’s in it.” Those were the phrases that frequented Dr. A’s mouth hole. Literally, no good reason to put her back on a pharmaceutical, of which most AEDs aren’t FDA approved for children under four. She’s not even three. Okay Dr. A, I know who’s in your pocket.

Let me be clear: Haleigh’s Hope may not be FDA approved, but neither are your multivitamins or your herbal supplements that most of us frequently buy for general health and wellness. Haleigh’s Hope is also proven to be one of the best on the market, with lab reports on every batch, no contamination, made from a medical marijuana plant bred to be high CBD, safe extraction method, and it’s organic and non-gmo, and put in safflower or MCT coconut oil – two of the best solvents to use for pediatrics, no additives or preservatives. So yes, we do know what’s in it: CBD:THC as unique to each batch, THC never exceeding .3%, and safflower oil. OOOOO those ingredients are so bad Dr. A (unless you have an allergy to safflower or coconut, then yes that’d be bad obviously).

Aria has been on HH for almost a year now. What are the side effects? Regular appetite, increased cognition and overall physical and mental development, and seizure control with no pharmaceuticals. Wow, those side effects are real nasty, eh? I held my tongue at the hospital, but I really wanted to tell Dr. A to shove it where the sun don’t shine. The nerve!

I further questioned about the possibility of PNES, and Dr. A would just keep cutting me off and saying “no no no no.” He did explain the PNES is emotional as opposed to behavioral. I proceeded to ask, well how can you determine whether it’s emotional vs behavioral in Aria when she can’t tell us how she’s feeling, etc.? He didn’t have a real answer for that either, so I just let it go. I did my research, PNES can be caused by PTSD, which we’ve (including her primary), already concluded she has some form of based on her reactions to doctors, nurses, anything that resembles those professions, and her reactions to going into certain buildings that may resemble the hospital setting (specifically hotels). This will be something I’ll discuss more with her primary when we go back in November, but for now we’ll take it for what it is: ARIA IS SEIZURE FREE (mostly)

So if what we saw in the hospital weren’t seizures, but I thought they were, how can I tell at home, without the help of an EEG, whether or not she’s having a seizure? Dr. A and Dr. B were helpful with this, stating that if I saw anything that lasted longer, or with different physical symptoms, then it most likely is a seizure and I should log it. I’m also logging this sleep disruptions to make sure they don’t increase. We can’t be too sure how long she was seizure free prior to admission, but based on the fact that all the episodes I was seeing at home were exactly the same as what we saw in the hospital, we can approximate that she’s been seizure free since we rebooted in July, with the exception of a few instances, which leads me to approximate that she’s had roughly one seizure every two weeks or so.This also makes sense as to why I wasn’t seeing much of difference in “seizure” control after July, because the lot of them weren’t actually seizures. It’s too difficult to determine for sure, so we’re starting the count from the 26th of September.

With that, since the 26th she has had three seizures. The first one I witnessed was overnight on October 8th, same physical symptoms as a sleep disruption, but her eyes opened and fluttered, and there was a bit more body jerky. That to me would indicate a seizure, so I saved the video on the SAMi to further review the event with her primary in November. The other two happened yesterday. Aria came down with a cold a couple days ago, and with it came a fever. Luckily she’s not having any febrile seizures, though. We found out last season, when Aria had an ear infection with a fever, that if I consecutively gave her acetaminophen she would have more seizures. This was also when we didn’t have such amazing seizure control. This week I have been switching between Little Remedies acetaminophen and children’s Motrin, only using the Little Remedies once during the day, since the Motrin provides longer coverage. I also always make sure I’m not just redosing her, I’ll check her temp and only give her medicine if she’s 101.0 or higher. So yesterday afternoon she got the acetaminophen for a fever, and then she settled down for a nap with Daddy.

screen-shot-2016-10-11-at-11-37-52-pm

Unfortunately she had two seizures during her nap. I think, considering the past with acetaminophen, that that was the cause of it, because that first seizure was hard like before we had this control. It could also just be that she’s sick, but I argue that because she hasn’t seized like that overnight when I’ve given her the Motrin these past two nights. I gave her a rescue dose during the first one, and of course I had no storage on my phone to record it, go figure! I sat down then and deleted a whole bunch of photos, messages, and music, and luckily just in time for the second seizure: Watch on youtube.  This one was six minutes before her regular 5pm dose, so I just gave it to her early. She comes out of the seizure after I stick the syringe in her mouth, which also makes me wonder if this was one of those sleep disturbances, as it looks very similar to what we saw in the mornings in the hospital. We’ll have to see what her primary says about it. The one before this was definitely a seizure because her arms tensed up in fists by her shoulders and her back arched, and her eyes rolled back. I just wish I got that one on video!

You may be wondering, why didn’t the rescue dose the first time stop this second seizure from happening? If it was a seizure and not a sleep disturbance. A couple reasons:

  1. We dose sublingually (under the tongue), or at least as best we can. It usually ends up between gum and cheek or swallowed, which means it takes the time to digest before reaching the bloodstream. We do our best to stick it under her tongue or in the gum so that more of it can be absorbed than swallowed. As she gets older we hope this will become easier and she’ll understand to hold it under her tongue for faster absorption.
  2. THC is a much more effective rescue than CBD, but we don’t have access to that in PA. CBD does work, but sometimes it may take a couple doses to work. Most times for Aria it works within 30 minutes to reduce a cluster or stop it. The first seizure was at 3:48pm, and the second was at 4:54pm. CBD has a half-life of about four hours, but that doesn’t necessarily matter when it comes to a rescue. Since it was just before her regular dose, I gave it to her anyway because she obviously needed it.

She’s feeling much better today, less congested, her fever broke for most of the afternoon before coming back just before bedtime.

Next week we’ll be going for our tour of her new preschool classroom at the IU, and will start shortly after her third birthday! Big things ahead! Her IEP is absolutely perfect to build on what we’ve been doing with EI, and they even bumped up her speech a bit. She’ll be going for three hours Monday through Thursday, so that’ll give me time to power through housework and meal prep and spend more time with her as a mom!

I have to admit though, I am anxious about the transition process. I’m worried that stress/exhaustion of this new endeavor will bring on seizures. I can only hope that if so, as she adjusts they will subside once again. Maybe what she’ll need is an extra boost of oil while she adjusts, we’ll just have to see. We’re also going into this as the winter season approaches. If you’ve followed her story in the past, you know that cold weather (typically below 40 degrees F), and low pressure coupled with a snow storm, tends to bring on seizure activity. We’re very anxious to see how she does this winter with just the CBD. It’s possible, too, she may need a higher dose to get through the winter, or even THC. So Delaware is still on the table if we need it. Hopefully we don’t, but time will tell!

Until next timepurple-heart
TA_L4L_UBBBQ


 

As parents of an epilepsy warrior, our mission is to help raise and spread epilepsy awareness through sharing our story with you. To share our hope and perseverance, and the strength and ambition that Aria demonstrates everyday. We’d like to encourage others to share their stories, blogs, websites, advocacy pages, etc., and join us in raising epilepsy awareness.

Your story is the key that can unlock someone else’s prison.

If you or a loved one has/is dealing with epilepsy and the daily struggles and triumphs that come with it, share your story with us to be featured on our blog. Tell us about you, how epilepsy affects you and those around you, and how you continue to persevere as an epilepsy warrior and/or caregiver. Visit our contact page today.

Our hearts are with you purple-heart

The Beast in Your Sleep

I watch you fall asleep;
So resistant,
Then you give in.

So peaceful,
As your eyes droop shut.

This peace is only temporary,
The beast lurks in the shadows.

Slithering through the crevices,
Living in your head.

Waiting, waiting, waiting,
And then…

Your body’s stiff,
You groan in pain.

Eyes fluttering,
As you try to get away.

Then,
It’s gone.

You’re back asleep.
~•~
My toes,
Hurt.

My heels,
Hurt.

My calves,
Ache.

My knees,
Buckle.

My hips,
Crack.

My back,
Is tight.

My shoulders,
Ache.

My neck,
Is stiff.

My head,
Is flooded
With emotions.

I,
Hurt.

I can’t imagine how you feel.

One year post-op

Aria wearing her Haleigh’s Hope shirt to spread the love down at CHoP!

It’s been just a little over a year since Aria’s last brain surgery, on September 3, 2015. They removed the rest of her right temporal lobe, additional sections of the right occipital and parietal lobes, and the right hippocampus in an attempt to reduce or eliminate her seizures. Her seizures were reduced, though they still negatively affected her from day to day, and her development was still thwarted by all the heavy medications. 

Three months after surgery we made the decision to trash the heavy meds, and try CBD oil to achieve the same seizure control, if not better, and help improve her quality of life. December 2, 2015 we entered the hospital once again for a V-EEG, to see what her brain activity looked like post-op, and to take her off of two of the meds (Trileptal & Keppra), and cut her Onfi dose in half prior to starting CBD. 

I had done about a solid month of research on the use of marijuana for epilepsy, how to obtain it, and who to trust to get it from for pediatric use. After numerous recommendations and testimonies, we settled on Haleigh’s Hope, an organic non-GMO oil made in Colorado by Jason Cranford and his amazing team. Six months after starting the oil, and after a hell of an interaction between Onfi and CBD, Aria was finally pharmaceutical free and THRIVING.

Let me repeat that, THRIVING.

Haleigh’s Hope has, and is, doing what five different high strength AED’s and a rescue medication couldn’t do. Aria went from (post-surgery), 20 seizures day and night, to an average of three subtle seizures a night, zero recovery time, increased attention, speech progression, play skills, personal care skills, etc. She can now identify the alphabet, count to 10 with number cards, identify colors, sort by shape and color, and finish sentences in her favorite books. How amazing is that?! From a developmentally behind zombie to a developmentally up-to-par sassy independent three-year-old!

With all my heart I believe Aria would not be thriving as she is if not for Haleigh’s Hope (and everyone in CO), and her amazing Early Intervention team.

Today we’re going down to CHoP for a 48 hour V-EEG to see what her brain activity looks like now with no AEDs and just CBD. We’ll then be able to compare her EEG from last December to this one, and see if there’s any type of change, whether it be positive or negative. I’m not holding my breath, I have a feeling there’s zero change besides the physical and developmental change we see, but we shall see!

Stay tuned 💜

Sorry for the silence…

Hello everyone, I just wanted to apologize for the silence on our blog as of late. We have been dealing with a lot since Lincoln was placed in our home, and I promise a big update post in the next week!

Just to keep you on your toes: Aria is being admitted to the hospital on Monday evening for a 48 hour V-EEG, just to see what the activity looks like a year+ after the last surgery, and since starting CBD. 

Stay tuned!

Relatable: Special Sounds

I saw this piece this morning, and just had to do an excerpt on it. I think a lot of special needs Moms, Dads, and Caregivers can relate.

Quite a profound passage by Danielle Boyce, read it in full on her blog, My Special Needs Lifestyle

 

Those special sounds that we can relate to for Aria:

“He’ll (she’ll) grow out of it.” Really? Because not even the experts can guarantee that, and you’re obviously qualified to make that judgement.

“I know exactly how you feel. My dog had seizures.” I’ve only heard this one a couple times. Yes, I feel for you, having anyone, or animal, with a seizure disorder is hard. Try empathy instead of sympathy, because our situations are not the same.

“If you have insurance, why do you need a fundraiser?” Insurance may cover her doctor & hospital related expenses, but it does not cover her medication, it does not cover the time my husband takes from work in order to be with his hospitalized daughter, it does not cover my meals while I spend weeks at the hospital with her, nor does it cover the hardships of barely making it pay-check to pay-check, and no, it does not cover the cost of a service dog.

_________________________________________________________________

And let me add in a couple of my own:

“Why don’t you apply for help from the government?” We have actually, and despite how difficult it has been to keep our finances afloat and food on the table since her diagnosis and me leaving work, we make just enough money to disqualify from any help. And no, we’re not living outside our means.

“Why don’t you just go back to work and put her in daycare?” I really wish it was just that easy, and I really don’t have the patience to explain to you why it’s not.

_________________________________________________________________

“Did you know when you were pregnant that something was wrong with him (her)?” I find this to be an awfully silly question. No, how could I possibly know how her brain cells were developing or what was going to happen six weeks after we brought her home.

“Did you take any medications while you were pregnant?” This one I usually only hear from people that don’t actually know us, and more so they’re asking me if I consumed alcohol. I appreciate your curiousity, but that’s rather offensive. No, I did not do anything “wrong” during my pregnancy.

“That drug isn’t legal in this state.” A special sound that we’ve recently triumphed over, but the war isn’t over. Patients like Aria still need better access to medical marijuana.

“We can always go back in and take out more of his (her) brain.” I’ve only heard this one once or twice, shortly after the second surgery. Yes, please, let’s further compromise her quality of life and development before trying other alternative therapies that could prevent further surgeries.

“He (she) looks so normal.” I am grateful that she is not noticeably physically affected by her seizures, but please don’t negate her disorder because she looks “normal.”

“Does that really work…Do you think it’s helping?” This is mostly in regards to her diet. I can’t really answer it, and I always feel like I have something to prove to the person who asks me this, and I shouldn’t feel that way. We chose the restricted diet in order to eliminate all possible triggers so that we may get a better hold on seizure control; and yes it has worked in conjunction with whole plant CBD so far.

“Even if we do find a mutation, there’s a good chance we won’t know what it means.” Change that second part to “it won’t change what you’re doing for her already,” and that’s the answer I’ve gotten from her current epileptologist in regards to genetic testing. So what? Does it not help to at least know? To have the information so that maybe one day in the future we will know what it means, or will be able to tailor her therapy to better treat her disorder with that knowledge, even it’s not immediate? I don’t see the harm in just knowing.

“I don’t know how you do it.” I find more solace than strife in this one, because yes, you literally do not know, so thank you for acknowledging that and giving me, and/or my husband, some credit for our daily struggles.

“The attending will stop by and then we will try to discharge you sometime today or tomorrow.” I am grateful I have not heard this one since December. If we can leave today, then why can’t we be discharged today, why do we have to stay here for another 24 hours?!

 

Read the whole passage by Danielle Boyce here: My Special Needs Lifestyle; Special Sounds

 

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Do you have a blog of your own or want to share your story with us? Visit our contact page to submit today

 

Until next timepurple-heart

When Naptime Means Stress, Not Relaxation.

I’m jealous. I’m jealous of other parent’s nap time with their kids. A time when they can rush to get some housework done, work on a hobby, or even the luxury of taking a nap with the kids. The ability to not have to be in the same room as they sleep because you know they’re okay, and nothing bad can happen to them while they sleep.

I’m jealous of you. I didn’t realize I was until today.

Aria started napping again this past week, after about nine months of no napping and new found energy after coming off of two years of barbiturates and benzos. I wasn’t sure if she’d ever nap again, but I wasn’t upset over it, I was relieved. Nap time was always like bedtime, riddled with seizures. I’ve always sat with her until she falls asleep, and sat next to her while she naps, never venturing far, for that seizure was always lurking; one seizure always meant more were sure to follow. If I had to pee or get a glass of water, it was me sprinting down the hall, doing/getting what I needed, and darting back down to the living room, hoping she didn’t have a seizure while I was away.

When she stopped napping, I stopped worrying so much. She had more time for learning and playing, and I had more time to actually complete housework at once, and seizures didn’t interrupt our day. Now she’s started napping again, and all the worry has come back. Though this time around, her naps haven’t been riddled with seizures, they’ve been seizure free naps; but that doesn’t stop my worrying.

Just today, Aria had been asleep for maybe ten minutes. I contemplated laying down with her, but what if she has a seizure and I don’t wake up? The monitor isn’t in the living room, I could never know. So that’s out. I’ll just plug my headphones in and catch up on some shows. Before sitting down, I ran down the hall to make a cup of coffee. Not two seconds down hall, I hear this faint moaning, the sound she makes when she’s having a seizure. I run back down the hall, her rescue oil is already measured out.

Screen Shot 2016-09-01 at 2.45.16 PM

She’s just sleeping, not having a seizure. Okay brain, false alarm. So I walk back down the hall to get my water, and I hear it again. I run back to the living room, false alarm. She’s sleeping so peacefully, but everytime I leave the room my brain imagines hearing her moan during a seizure. I’m so used to it happening all the time, especially while she sleeps.

I don’t know if I’ll ever be able to leave the room while she naps, to ever not be on edge, or if I’ll stop hearing “ghost seizures” when I leave the room briefly. I’m not yet used to the freedom whole plant CBD has provided Aria, and thus for myself. It may not be complete seizure freedom, but a handful or less of daily seizures is far better than 12 or more handfuls. She’d probably have to go a significant amount of time without sleep seizures for my anxiety to calm down; but it’s always when you start to relax that epilepsy rears it’s ugly head. We’ll just enjoy the success we have so far, and keep working towards better control.

*We’ve never done a sleep study, but we would like to down the road. This will be the first almost entire year of her life that she hasn’t been admitted to the hospital because of uncontrollable seizures; we didn’t want to put her through anything else just yet, after having gone through the surgeries. We will be going in for an EEG in the next couple months to see what her brain activity looks like now, a year after surgery and nine months on CBD. She seems to be responding well to the recent increase in CBD, to .75mg/lb, but hopefully her seizures remain frequent enough that we don’t have to be in the hospital for more than two days.

 

Until next timepurple-heart

 

I’m Prepared to be Disappointed, but That’s Okay.

First thing this morning, Aria climbed over me and rolled right out of bed, taking off towards the kitchen. Startled awake, barely coherent, I grab the eye glass case off the night stand that holds her rescue dose of CBD, and chase after her. The only thought going through my head “she’s going to have a seizure in the kitchen.”

She didn’t; she was bright eyed and bushy tailed, leaning against the dishwasher, smiling, waiting for me to open it so she could start her daily chore. I felt so bad that there weren’t any dishes for her to empty! We made breakfast, and started our morning routine, which usually is just me sitting on edge for the first few hours she’s awake, waiting for a seizure to happen. Today it didn’t.

I had stayed up until her 1am dose last night, and she hadn’t had any seizures before that, so I was anxious to watch those six hours of video this morning. If you read my post from yesterday, I had increased her dose in the afternoon, after staying at the same mg/lb for five weeks.

 

SAMi3 Alert Monitor

Well, I watched the video feed, holding my breath, and fighting off the elephant, kitty cat, lion, and cow that kept climbing all over me begging for attention (Aria has become a regular zoo and loves when I “try” to guess what animal she is, haha). I got to the last video when she popped out of bed, and made sure I didn’t miss a seizure upon her waking.

No seizures.

I put the monitor down, and rangled in the lion that was attacking my leg. That lion got a thousand hugs, kisses, and tickles until she laughed out a “stop,” or as she says it, “pop!”

I couldn’t believe it, and still all morning I was waiting for one to happen. Lunchtime came around, and then quiet time. There has been no such thing as nap time with Aria since she came off all the medications. I’ve always thought that was partially because she had all this new energy, and because she always had seizures that’d wake her and end her peaceful nap abruptly. The past couple months she’s been looking tired in the afternoon. We’re thinking her body is starting to level out, four months drug free, reregulating itself, so I started implementing some quiet time with a pillow fort and some books for an hour or two a day. Today she napped.

“What?!” I had been reading one of her favorite books, looked over at her, and she was asleep. “This is when it’s gonna happen. Her brain’s gonna make up for going 33 hours seizure free. Get the oil.” That was all I thought for the next hour and a half, holding my breath; but nothing happened. She woke up grumpy (when has a nap ever left you feeling refreshed? I always want more Z’s!), I could see the glint in her eyes of a misfire. I grabbed the syringe, told her to say “ah,”  as I slid a dose of oil under her tongue, and then, it was gone. No seizures. I breathed.

Aria is now 40 hours seizure free, and asleep, but I’m not holding my breath.

She’s been asleep now for almost an hour; seizures while she sleeps are practically inevitable. Though a repeat of last night would be nice, I highly doubt another seizure free night will occur just yet. It is, however, quite nice to see such an immediate response to a dose increase after a couple months of no response!

As I said yesterday, now it’s just time to observe and practice patience.

Until next time, Cheers

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