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.
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:
- 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.
- 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 time
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