Sunday, May 14, 2017

March + April Update

These two pictures accurately summarize what has been happening in our world over the past two months. The creeping of March and the insanity of April. In the upper pic, you can see Mira slowly slouching in her chair, trying to slither her way to somewhere, out of her current position - whether she is uncomfortable, restless, or just wants to move - we are really never sure what she is trying to achieve when she does this. She does it at home, at school, in the car - pretty much everywhere.

Whatever the case, Mira's desire to creep out of her seat is how we all felt, trying to just get out of March. With no spring break plans and everyone getting stir crazy from the tail end of winter, I think we all needed a change of scenery. There wasn't anything particularly eventful about March, it just crept by at a snail's pace, simply because we didn't have a travel agenda for spring break, so there was nothing to gear up for, nothing to pack for, and nothing to really look forward to, except for well, April and warmer weather. Mira does not travel well and the boys were not interested in really going anywhere, so we decided to have a low-key spring break, which meant trying to occupy the time without going insane being at home.

We managed to get through March, but it seemed as soon as April hit, everything shifted into high gear. I had to do a ton of traveling, mainly to Virginia and Massachusetts, which was difficult on Sarah. Adding to that, I don't think the kids had a full week of school in March or April. The slouching led to full-on fidgeting, and nearly ending up on the floor. I managed to juggle my work schedule around Mira's appointments, having to take some time off to go to some of them - ultimately it gave Sarah a much needed break from trying to do 12 things at once, while I was out of town for a majority of the month.

One of those appointments, in the middle of April, involved Mira getting an ERG, which is an electroretinogram, ordered by her ophthalmologist at her last appointment. The reason for the test was two-fold: first, Mira's vision is extremely poor, thus it was a precautionary measure to see if there are deeper underlying issues with the structural integrity of her eyes and second, because of Mira's very high myopia, her heterozygous mutation of TPP1 (and possible connection to NCL) the rationale was that an ERG may also reveal any clues to her having some NCL-like symptoms that might surface from the test.

I was very optimistic for the first half of the appointment, where they had to dilate Mira's eyes - the pics above were her in the waiting room, as we were waiting for the dilating drops to take effect. Mira was all 'dragons' and smiling a ton. Unfortunately, the second part, the actual exam, did not go so well. Mira became restless and irritable, as we had to stay in a room in completely darkness for about 20 minutes, so the eyes could fully adjust for the ophthalmologist/specialist could perform the actual ERG. Mira's last ERG was about 8 or 9 years ago, where she was being monitored for retinal toxicity while on Vigabatrin. The technology since that time has changed and the ERG can now be done without sedation, with a handheld device held over each eye. Not having to go through sedation is great. However, Mira did not have the patience, even for this non-invasive exam. It took all of my physical strength and the assistant's strength to hold her still while the specialist tried to get a decent reading for each eye. This process of trying to hold Mira's head still, in complete darkness, with her crying, trying to push her way out of her chair, for 20-30 minutes, was incredibly exhausting. Mira did not want any part of this and had checked out as soon as the lights were off. By the time we were done and back in the daylight, she was back to her pre-exam attitude, making dragon noises once again in the van on the way home. It was an exhausting experience and ironically, that was almost a month ago and we just received the results last week, which were normal. The good news is that there are no structural or degenerative issues that surfaced from the exam, yet her extreme myopia is still a mystery.

Our second appointment was just this past week, with endocrinology. We had a discussion at our last appointment with her endocrinologist, which was about 6 months ago, about stopping Mira's Lupron injections. We collectively decided to go ahead and stop them now, as Mira is almost 12 years old, which is more of an appropriate age for her to start puberty. The rationale for starting the Lupron injections in the first place, was to delay the onset of puberty, which Mira was showing signs of, at age 7 or 8, which is extremely early. We don't know why her endocrine and hormones are so out of whack - just another side effect of having a catastrophic epilepsy I suppose. We think it is the right decision to go ahead and let things run their course finally, although we have some trepidation as to what we should expect once her last injection begins to lose its efficacy. I have read and heard that some kids have a significant spike in seizures, with all of the hormonal shifts that tend to happen in puberty. Only time will tell.

Other than these two recent appointments (and one with neurology next week) it has been quiet in terms of Mira's diagnosis, medication changes, or anything medically speaking. We have not made any medication shifts with anything - she is still taking Lyrica, Fluoxetine, and pyridoxine, with the latter two helping with her irritability. We only added an iron supplement to potentially help with her fatigue. In terms of her disposition and demeanor, not much has really changed in the last few months. She has had good days and bad - Easter being a particularly bad day for her, having multiple intense tonic-clonics that made her very irritable and dystonic, which led to she and I staying home while Sarah, Eli, and Jonah went on an Easter egg hunt at a friends' house. She has had several bouts of dystonia over the past 2 months, complete with rigidity, seizures, and an altered, distant disposition we tend to see with her, lasting no more than 24 hours for each episode. She also had a few days where she was very quiet, wanting to just lean forward in her chair, hands over her ears, trying to seemingly shut everything out, just like in the picture above. And of course, we have had those days of inconsolable crying, where nothing makes her happy. After almost 12 years of this epilepsy journey with Mira, we never no what to expect.

Monday, March 6, 2017

Passing the Baton

It's been a tumultuous few days here, with the brunt of the craziness happening late this afternoon. Mira has been having some rough seizure days at school and at home for the past few weeks. Last Thursday, she had three tonic-clonics at school, all within a half hour or so, which is the second myriad of clustered seizures she has had in the last few weeks. She also had another episode yesterday at home, where she had an intense tonic-clonic, which made her very lethargic and irritable the rest of the day. This morning she seemed to be feeling better. Although, I snapped a few pics of her, since she had this very skeptical look on her face, as though she wasn't sure what the day was going to bring. Funny thing is, neither did I.
The day started off with her bus having hydraulic problems, which they parked right in front of the house, but ended up ordering a replacement bus to show up, which took about 45 minutes. Mira ended up back in her bed until the new bus arrived, as she tends to get impatient and cranky in the morning when her routine is off. Despite the rough weekend, she had a decent day at school, no seizures or activity, but she did have some bouts of irritability. The real fun began about an hour before I came home from work.

Not to go into any great detail, as the story involves a lot of poop, but I will just say that Mira had an 'episode'. Keeping Mira regular is always a challenge, with a majority of the struggle ending up on the constipation end, but today, we had the exact opposite problem. When this happens, it quickly becomes a two person job and unfortunately, Sarah had to fend for herself as I was still at work. Diaper changes and the aftermath of a blowout can be traumatic, exhausting, and of course, extremely messy. Thirty minutes and some seriously soiled laundry and bedding later, Sarah had reached the tipping point by the time I got home. Mira was extremely irritable too, since she was most likely hungry after seemingly evacuating her system, based on the amount of cleanup that was involved. Sarah simply 'passed the baton' and took a much needed break by getting out of the house for an hour. Mira continued to cry until I could get 3 bottles in her and got her in the bath.

Caring for Mira is utterly exhausting some days and coming on a Monday, after getting back into the swing of work and school, compounded the exhaustion and tolerance level for Sarah, myself, and Mira. I think we were all dealing with some serious caregiver fatigue today. Today was a pretty crappy Monday, no pun intended.

Tuesday, February 28, 2017

February Rewind

This month was so much of a blur, that I feel like I need to give a quick day-by-day recap. I missed a few important events, so let's rewind to around the beginning of the month and revisit:

February 2nd: Mira's vision specialist appointment, which can be recapped here.

February 3rd: Mira's IEP.

February 6th: Jonah's IEP.

February 10th: Mira seen in ophthalmology and her rough seizure day, which can be recapped here.

February 13th: Mira gets her new lightweight stroller! After my post on the 12th, our schedule became very hectic and I missed out on perhaps one of the most important days so far this year. Thanks to Variety KC (and the tireless efforts of Deborah Weibrecht) and Blue Cross Blue Shield of KC (BCBS), Mira received a brand new, lightweight stroller that can be lifted by just Sarah or myself - it was a must have for us, in the absence of having a converted van, since her other new chair (her permanent one we received through insurance at the end of 2016) is extremely heavy and nearly impossible to lift with one person. Now, we have so much more flexibility with taking Mira just about anywhere. We are so incredibly grateful to have this chair for her. On the afternoon of the 13th, Variety KC and BCBS hosted an afternoon event and formally gifted Mira her chair. Mira was in a sour mood most of the afternoon, but we managed to make it through and met some extremely generous people in the process.

February 14th: Had to travel to Halifax, Nova Scotia, then drove to Moncton, New Brunswick (2+ hours away) right after it had finished dumping over 70 cm of snow on Monday. Happy Valentine's Day too. When I arrived in Halifax, the airport was already cleared and into Moncton that evening, they were still digging out and hauling off snow. Sarah and I spent the evening texting from 1,900 miles away.
February 16th: Sarah has to take Eli to the orthodontist, to adjust, clean and/or repair his braces, for the umpteenth time. Gets hectic as his appointment is first thing in the morning. I am leaving Moncton, trying to drive back to Halifax mid-afternoon, during another impending snowstorm, that brings very high winds and of course, more snow. I get stuck, along with a few other cars and 18-wheelers, about 10 km outside of Moncton, lodged in 60 cm of snow on a highway exit ramp that the New Brunswick DOT had not plowed yet. Two hours, DOT plowing, and one good samaritan (with a huge shovel) later, I am off the exit ramp and back on the road. A normal 2+ hour drive takes over 6 hours, with a majority of my 'scenic' drive looking like something out of 'The Shining' - my knuckles frozen from digging myself out and from tense driving for hours on end:

February 17th: Goodbye Canada. Depart Halifax at 5:30am (Atlantic Time - 3:30am CST) and head home, which takes most of the day. Arrive home in Kansas City to 65 degrees and sun.

February 18th-19th: Mira and I take advantage of the weather and do a ton of walking outside, all in her new stroller, which is fantastic! It was so much lighter, easier to maneuver, and certainly takes infinitely less effort pushing up hills. We spent the entire weekend outside and in the sun. Mira is in a solid mood most of the weekend, only getting cranky when we were inside and idle.

February 20th-21st: Have to jump back on a plane and go to Virginia. Still exhausted from my Canadian trip and ready to be back home before I even get to the airport. Kids are finishing another 4 day weekend, while recovering from colds, flu-like symptoms, and fevers from weeks before. I start feeling cruddy by the time I get to Virginia on Monday afternoon. Finally arrive back home in Kansas City about midnight on Tuesday.

February 22nd: Sarah again has to take Eli to the orthodontist. More adjustments and repairs.

February 23rd: Mira has 3 intense tonic-clonics at school and is wiped out the rest of the day. I am burned out at work and absorbing all of the sickness that was passed around the office and every flight I was on.

February 24th: Feeling full-on flu symptoms and end up staying home from work and in bed all day. I feel terrible for Sarah, who just spent 6 out of the last 8 work days holding down the fort with the kids, as she is exhausted too. Spend the weekend slowly recovering.

February 27th: Having a coughing fit on the couch and end up bursting a blood vessel in my right eye. Have to go back to the airport for an global entry interview I have had on the books for months. Cannot reschedule and go in the afternoon. Still having great weather in KC though, so bonus there.

February 28th (Today): Mira has a Lupron shot in the morning in endocrinology. As she is quickly approaching 12 years old, we will ultimately start having conversations with her endocrinologist about when we should stop the injections and let puberty continue. For now, we are maintaining the course and will have the discussion at her next round, which will be in 3 months. And on this, the last day of February, I look back and can honestly say that the month has been an utter blur.

Wednesday, February 22, 2017

Still Spinning

February continues to spin 100 miles an hour. After all of the hectic first couple of weeks of the month, when I mentioned it couldn't get any busier, I spoke too soon. I had to go to New Brunswick for 4 days last week, getting stuck in a snowstorm outside of Moncton and didn't get back to KC until Friday. I was home for the weekend and had to turn around and go to Virginia early Monday morning and returned late last night. My sleep patterns have been screwed up for weeks now and on top of it, I've picked up the cold and sinus congestion that Sarah and the kids had last week. It was amazing returning home to 60 degree weather, after trudging through 60+ centimeters of snow on the east coast of Canada. Mira and the boys didn't have school on Friday or Monday of this week, which they didn't seem to complain about - who would, with yet another 4 day weekend. Mira and I spent a lot of time walking and enjoying the spring-like temperatures, which was warranted - she was in one of those up and down moods that required being in a constant state of motion. She managed to be in a good mood on Tuesday and today, enjoying some cafeteria foods and having some solid days in the classroom. We saw and heard a ton of dragon noises this morning and this afternoon, evidence that she continues to be in a positive mood. Since her last big episode at ophthalmology several weeks ago, it was been eerily quiet on the seizure front.

Sunday, February 12, 2017

A Funeral, A Birthday, 2 IEPs, and Ophthalmology

I truly don't think the last 10 days could have possibly been any busier. My head is still spinning from the non-stop, tumultuous few weeks we have been experiencing here. Unfortunately, it all started off with the passing of Sarah's uncle Jamie, who was a huge part of Sarah's life growing up here in Kansas City. He was an incredibly thoughtful person, making you feel involved and important with every encounter you had with him. He was engaging and sincere - he will be missed dearly by everyone in our family.

With Jamie's passing and the funeral mid-week, our days and evenings were occupied, gathering pictures and exchanging stories with relatives that managed to make it in town. On Wednesday, we attended the funeral and luncheon afterward, which trickled into the late afternoon, eventually leading into Eli and I spending the evening at his 9th grade enrollment activities, at his future high school. I cannot believe I am going to have a high school age child in another 6 months. Eli had an equally busy week, with mid-week enrollment choices and then celebrating his 14th birthday tonight! He has been saving up the money to build his own computer, researching and buying the parts over the past 6 months and with the birthday presents he received tonight, his build is nearly complete.
Prior to the funeral, we had 2 IEPs, sandwiching the weekend - one on Friday for Mira and another on Monday for Jonah. Both were fairly uneventful and there weren't a whole lot of changes for either one of them from last year. However, we did discuss Mira's diet some, coming to the conclusion that she should have the opportunity to try some of the school lunch offerings. The cafeteria staff has to puree her foods, as they do with some of the other students in her class, but it would give her the chance to eat with other kids in the cafeteria. This past week they started initiating this plan and Mira has been able to sample a variety of different foods, including broccoli, mashed potatoes, and a few desserts. Her teachers and paras noted that she was very enthusiastic about it all too. We have had our reservations in the past of pureed foods, as she used to gag on some of foods we offered, so we eased up years ago and kept her primarily on a bottle diet. Speaking of which, Mira seems to be gaining some weight since we upped her calorie intake. I can't give an exact amount, but it is visible in her legs and arms - she is looking fuller and certainly feels heavier when we are transferring her. Yes, not a very clinical analysis, but I can assure you, she has put on weight, which is great.

To finish off our insanely busy week, we had an ophthalmology appointment for Mira on Friday morning. Right after getting settled into the exam room, Mira had a huge tonic-clonic seizure, knocking the bottle I was giving her clear across the room, dousing the nurse with a spray of rice milk and protein powder. Mira was post-ictal during the exam, which made it a little challenging for the ophthalmologist to get an updated script for her. It took us months for us to get an appointment on the books, thus it was all just unfortunate timing that Mira has an enormous seizure right then. By the end of the exam, Mira was still having some dystonia and odd movements, but they were able to give us an update on her vision. Basically, her astigmatism is slightly worse and her vision overall is slightly worse, but perhaps not enough to warrant getting a new pair of glasses. Based on the discussion we had the week before with the vision specialist and our most recent conversation with the ophthalmologist on Friday, the recommendation was for Mira to have an ERG done, as she has not had one for 8 or 9 years, when she was being monitored in Saint Louis for retinal toxicity while she was taking Vigabatrin. The feeling was that is would be a good idea now to monitor her retinal activity and for us to understand where she is at in terms of her overall vision picture.
Mira had a rough day after leaving ophthalmology - she continued to very lethargic and altered, having an afternoon of dystonic movements and small seizures. We ended up keeping her home the rest of the day and ultimately, we had to intervene with Diastat to try and break the cycle of seizure activity by mid-afternoon. She has had many of these episodes over the years, with a spike of activity over the past 2 years. Fortunately, the dystonia never seems to last more than 24 hours and Mira quickly rebounds. She was a little lethargic on Saturday but we had spectacular weather (60 degrees, breezy, and sunny) so Mira and I spent a lot of time outdoors going on walks. We did the same today, although it was colder and overcast. Mira didn't seem to mind. 
Jonah was battling a fever and cold most of the week, missing school Thursday and Friday, thus we ended up taking him to Mira's appointment with us. His fever broke on Saturday and today he is back to his old self. I could tell you that the next two weeks are going to be easier, but I would be lying. I have to head to New Brunswick this week and Virginia the week after, which leaves Sarah to hold down the fort while I'm gone. 

Thursday, February 2, 2017

Vision Specialist

Today we met with ophthalmologist expert here in Kansas, who specializes in children with significant visual issues, particularly  Cortical Visual Impairment (CVI).  CVI is basically a disconnect between what the eye(s) see and the brain interprets - it is more of a neurological impairment than an actual visual one. Mira was diagnosed with CVI when she was very young and ended up receiving services through CCVI (Children's Center for the Visually Impaired) here in Kansas City, until she aged out of the system and entered the school district. Because of her constant neurological flux (hypsarrhythmia) it is extremely difficult for Mira to focus on much, if anything, for an extended period of time. Coupled with her extreme myopia, her actual visual processing ability is speculative at best. We do know that she can focus on her toy - the bright lights and motion are able to capture her attention, when she is in the right mood. The vision therapist she saw today was able to look at Mira's background and history to see if she could benefit from other alternative therapy approaches, so that Mira can reach her full visual potential. There wasn't any significant revelations during the appointment, however, it was great to hear someone else's expertise on how we might be able to help further her skills. Mira was able to maintain her composure throughout most of the appointment, although is slowly mastering her slouch in her new chair. An hour into the meeting, she had pretty much checked out and was ready to move on. We have an ophthalmology appointment next week, which will be interesting to find out if Mira's vision has changed at all over the last 12 months.

Tuesday, January 31, 2017

Mira's New Chair

Mira's new chair arrived today! While it is technically the same chair (a Quickie Iris) and only slightly larger to accommodate her future growth, it feels like it it so much bigger. Perhaps it is our tiny house with narrow doorways, or the new tray attachment, but it just feels enormous. Her tray and easel are certainly wider than her current chair and they barely fit through the doorway to her room. Her easel has adjustable knobs on each side, which allow it to tilt on the tray, but unfortunately, they protrude out much farther than her old tray, and they nearly hit the door jambs and the narrow hallway to her room. The new headrest feels more secure and has more of a curve to it, for better head support on the sides. The footrests are also very stout and did not come with foot pads. Mira kicks with her heels so much on the footrests, that she has destroyed her last set, so we figured it didn't make sense to get any on her new chair. She kicks with the heels of her feet just for sensory input, so the pads weren't necessarily providing any real protection. The biggest change is perhaps, the color - it is dark purple in color, much darker than her current pink chair, which we couldn't get because they no longer supply the Quickie in that particular color. The process with the seating company went very smoothly this time, a far cry from our last interaction with her previous chair, over 4 years ago. The company has since changed names and ownership, all for the better. While we met with the same sales rep before, however the communication and exchange was fairly painless this time.

Monday, January 30, 2017

Melissa Officinalis (Lemon Balm)

While we are continuing on this theme of alternative herbs, I wanted to offer up lemon balm (melissa officinalis or I will use the acronym LB) is often lumped into the same category as bacopa monnieri. LB is recognized for having a calming effect, often categorized as a natural anti-anxiety treatment. In terms of seizure control, most of the articles that I have come across are limited to animal studies, including this one, and this one, and even this one. While the effects of LB have all been positive in every study, there are few human trials that have been documented, although the conclusion reached from all of those studies were that there was 'insufficient evidence to support a well-established use monograph'. Also, while no adverse effects were recorded in any of the human trials, the half-life of melissa officinails seems to be very limited, offering little extended protection beyond a few hours, in terms of effective seizure control or as an anxiolytic. One of the most promising trials I have read in regards to LB is located here. The phytochemical mixture used in the study (Cyracos) can actually be purchased OTC by a variety of suppliers. The efficacy of this particular LB mixture was much more effective at alleviating symptoms of anxiety, at a higher 600mg dosage. Lemon balm didn't appear to be much of an option for Mira, as most of the anecdotal data I have read has to do with it being an anxiolytic and perhaps not effective for seizure relief. Nonetheless, it might bring some value in reducing Mira's irritability.

Saturday, January 28, 2017

This Week with Mira

This week was a busy one for everyone, but most of all for Sarah. On Tuesday, I had to leave for Boston and didn't return until Friday evening, which left Sarah to hold down the fort for 4 solid days. Since the kids didn't have school on Friday (teacher work day) it made the stretch toward the work week finish line even more of a challenge. Mira was very up and down for the entire week - some days she was in decent spirits, but her shifting moods have been difficult to predict, and to try and redirect. For instance today, we had one of those days where nothing would satisfy Mira's fussiness for more than a a  few minutes, unless of course, you were walking. Thus, we took several walks today, all in the afternoon, when she was at her lowest. We ran some errands this morning which she tolerated for awhile, but soon expressed her lack of interest by squirming in her chair, while getting increasingly upset. She couldn't stand not being in constant state of motion. On our walks, she would only get irritable whenever we stopped. We went down to the village (our local shopping area a few blocks away) and with each stop, in each store, she raised the cranky bar one more notch, until we were back on the sidewalk. She ultimately settled down after dinner, but at the end of it, this Saturday was just 'one of those days' for her.

Vitamin D + Vitamin A

There is a lot of research that exists on vitamin D, particularly in relation to depression, autism, seizures, and a host of other neurological manifestations, that supposedly stem from having low vitamin D levels. Referred to as the 'sunshine' vitamin, vitamin D is a fat-soluble (can be stored in the body) and its main function is to promote calcium and magnesium absorption in the gut. I won't go into the specifics, as they can be explained much more thoroughly on this site than I could ever do justice.

I have always maintained a certain level of skepticism with vitamin D, since to me, it really isn't a vitamin at all - it's a steroid, that ultimately can affect hormone levels in the body, which in turn affect the entire equilibrium of the endocrine system. Touting vitamin D as the savior for combating all of these different illnesses raises a number of questions for me and there is certainly an endless amount of literature to address my inquiries. Just search through Pubmed and you will discover enough reading for all of 2017. Vitamin D is implicated, in terms of epilepsy alone, in everything from hypocalcemia to influences on AEDs.

Vitamin A on the other hand is a bit of an anomaly when it comes to the implications on seizures and autism. Vitamin A is also a fat-soluble vitamin, nearly synonymous with, on every single health website imaginable, the word 'vision'. While its importance to the cornea cannot be ignored, the vitamin's influence on other organs should not be understated. Just like vitamin D, vitamin A can also influence hormones.

So what is the potential connection between D + A? I have been asking this same question, as I have gone through a ton of anecdotal stories regards the efficacy of both vitamins, on seizures and autism. Some medical professionals have even gone so far as to develop a high dosage protocol for the treatment of autism in particular, for both vitamin D and vitamin A. There are message boards that have extensive threads on this very subject, most of which reference one single source: The Vitamin D Council, which is less of a populated 'council', as it is the compiled research of one person, Dr. John Cannell,  and you should note with full disclosure, he specifically endorses one particular brand of vitamin D, developed by Biotech Pharmacal. I'm not sure exactly why this particular balance of vitamin D3, vitamin K2, magnesium, zinc, and boron are considered an exclusive proprietary blend that they need to be endorsed, with Cannell potentially being compensated for, as there are hundreds of supplements on the market, but I digress. Regardless, Dr. Cannell's commitment to researching the effects of vitamin D should not go unrecognized. His agenda seems very simple - most of the general population is deficient in vitamin D and everyone who is deficient, should be supplementing to some degree. In terms of vitamin A, no such council exists as far as I can tell, thus there is no single unified source of literature to comb through.

There are connections between D + A and they revolve around the mechanism of action. The one that I started focusing on was the idea that both vitamins can influence voltage-gated calcium channels (VGCCs). You've probably heard me mention this in the past, as VGCCs are the supposed mechanism of action of Lyrica (pregabablin) which is a medication that Mira has been on for years. The function and pharmacology of VGCCs are nicely organized in chart here, which as you will read, influence everything from nerve terminals to endocrine cells. VGCCs have been the focus for therapeutic studies for some time - here is an extensive technical paper on the subject. If vitamin D can affect the 'fluidity' (so to speak) of VGCCs, are there antagonists that do the exact opposite? As it turns out, there has already been some research regarding the antagonistic relationship between vitamin A and vitamin D. I also found a great article that highlighted the concerns of excessive or even additional supplementation of vitamin D in relation to autism, from more of a historical perspective.

Saturday, January 21, 2017

Bacopa Monnieri

I have researched a number of alternative therapies for the treatment of epilepsy and one of the more interesting ones I found was bacopa monnieri (BP or just bacopa). Bacopa is a flowering herb, with supposed medicinal properties that is more commonly used in Ayurvedic medicine, for the treatment of everything from seizures to asthma. The investigated chemical(s) within bacopa that provide the actual therapeutic effects are bacosides, which are often recognized for their neuroprotective qualities. The bacosides have also been researched for their effects on blood flow, memory, antioxidant activity, and acetylcholine levels in the body.

I was most interested in the research on bacopa's effect on seizures, which is fairly limited in terms of solid human trials. There is a brief abstract here, but most of the other studies I came across were only animal studies. This full article and references can be accessed here, which offers some interesting details on the effects of bacopa on a host of different neurological issues. In the studies that actually listed the extract details, the range seemed to be anywhere from 30-60% bacosides, which is comparable to what you would find in any OTC bacopa supplement. Most supplements range from 20-50%, depending on the extract and/or manufacturer. In terms of seizure control, based on what I read, the effects of bacopa were all over the place, somewhat speculative, and again, limited to studies primarily on rats. The mechanism or potential actions included:

Raising serotonin (5-HT) levels in the brain
Reduction of oxidative stress
Prevention of glutathione reduction in the body
Potent antioxidant (greater than vitamin C)
Possible dose-dependent metal chelator
Glutamate excitotoxicity mediator

Out of all of these proposed positive impacts on cognitive processing and/or development, I found the elevation of 5-HT levels to be the most interesting. There seems to be a strong relationship with epilepsy/autism and serotonin. Despite the fact that all of these studies were only animal studies, there is convincing evidence that whatever the catalyst is (bacopa, tryptophan, 5-HTP, etc.) for altering 5-HT levels, whether directly or indirectly, has an effect on the neuroprotective capabilities of the brain and central nervous system.

Friday, January 20, 2017

Friday

Mira has had an up and down last few days. She is fairly quiet and in a decent mood in the afternoon and around dinner time, but the mornings have been a little rough. She has been refusing to drink more than one bottle at most, when she usually has two, which means that she ends up getting hungry at school much earlier than usual. It seems to throw her whole internal clock off for the rest of the day and she ends up being cranky by dismissal time, which ultimately means she is cranky on the bus ride home, as she was today. Yet, she won't drink enough in the morning and she gets fussy, for whatever reason, so she ends up back in her bed until a few minutes before the bus arrives until she calms down. It's a vicious cycle. Ultimately, she has been ending the last few days on a high note, drinking a ton for dinner, then having some extended toy time before bed. Tonight in fact, she went almost a solid hour of playing with the toy, before getting worn out. We have had some very positive success since reintroducing the toy - she hasn't had any seizures or even twitches when playing and it certainly isn't acting as a trigger as it used to in the past. We will continue with it, unless we start to see some familiar patterns emerge. Sarah is in Cincinnati visiting her sister, so I will be holding down the fort with the kids until Sunday afternoon, so we will all be trying to find some fun things to do for the weekend. Wish me luck!