A Collection of Dup15q Seizure Videos.

What great balance! 

  This blog entry is a pretty hard one to write because it chronicles the evolution of Luki's seizures.  Around 2014, the happy YouTube videos of him playing with toys, giggling and making progress with his speech and physical therapy were replaced by a starkly different set of videos of him being overtaken by various types of seizures. This is the age when he started having major tantrums as if he was in severe pain. The first type of seizures we noted at the age of 4 were of him spacing off for about 30 seconds followed by 1 to 2 hour naps.  These "complex partials" would increase in duration and frequency then disappear altogether for about 3 months then come back with a vengeance.   He would then have uncontrollable twitching episodes which scared me as much as it did Lucas (he is nonverbal so I can't really say for sure, but there was terror I saw in his eyes while they were happening).  Thankfully, he does not have these types of seizures anymore.  Appropriate medications have successfully eliminated almost all of these for two years now.  Knock on wood, they don't come back but  I am constantly on high vigilance and assessing his behaviors and mood to see if he has had any mild, visually undetectable ones.  A few weeks ago, we noted mild head drops followed by short naps making a comeback but a small adjustment in Banzel  and lamotrigine (two seizure medications he is currently on) dosing solved the problem. The neurologist suggested against started new AEDs until we max out on the ones we currently use. In the past.we tried Keppra and felbamate as well as CBD/fish oils but have ditched them all because these two AEDs are working incredibly well for him, for the time being.  The next one I want to try , if we need to add another,  is epdiolex currently on Kaiser's formulary.   Although head drop seizures were the shortest seizures  - a quick head drop with no need for long naps after, they were the most dangerous because he would fall and hit his head causing injuries to his face.  And, being the avid climber that he is, like most Dup15q children, he would usually fall from a high place and compound the severity of his injury which landed us in the ER several times.  

I am forever grateful to other parents of Dup15q children who experience seizures for sharing their enormous knowledge with me of medications that worked, or didn't. The cup of sorrow is best drunk in Company. I am also immensely grateful for the research driven by the Dup15q Alliance to determine the efficacy of various antiepileptic medications as well as collaborating with biotech companies and academia to champion clinical trials of medications that offer a more personalized approach for the Dup15q demographic. I am also grateful for advanced technologies that help assess and treat seizures like this piece of portable EEG equipment called Ceribell,  that can be used by nursing staff in an inpatient setting or by concerned parents at home.    https://ceribell.com/

2020: COVID 19 Quarantine Shenanigans

First movie made with PowerDirector 12.  I found a new toy and hobby!

A day at the Los Angeles Arboretum, Arcadia

Picking strawberries and blueberries in Temecula Berry Company 

Quarantine Fun at Home

Visiting Amy's Farm for fresh vegetables and petting the farm animals. 

Quarantine Easter fun at home.  

Quarantine fun at home hanging out with TaeTae and Luki

10 Years of Being a Floor Nurse.

                                               

In the raw. Stage one pressure ulcers don’t suit me. Ahhh.. so good to breathe after 12 hours of double masking. My first COVID intubation and rapid. Prayers for us all.

In high school, I worked the concession stands during weekends at the Cineplex Odeon, Beverly Center to earn some extra pocket money.  There as a young guy who worked the box office and fancied me so we went on a few dates.   Daniel was a brilliant young artist and he was getting accepted into one of the world's most prestigious art school,  CalArts in Pasadena.  When I told him I wanted to go away to UCSB for a Bachelors in Undeclared, he suggested I just attend a nursing school and become a registered nurse, just like his mom.  I don't know why I took so much offense to that at the time.  Here he is going off to an amazing school to pursue his dream of becoming a world renowned artist and he wants me to just become a nurse?! Just a nurse, How insulting! 

We parted ways after high school graduation and I've never heard from him again.  I wonder what amazing things he is doing now.  

Fast forward 25 year later and I am found a practicing  registered nurse for 11 years now.  I wonder if Daniel had some prophetic gifts he used to see into my future.  I arrived to this "calling" via a rather circuitous route and I've experienced so much of life before deciding to attend nursing school and I wouldn't trade the journey for anything. 

Carl Jung once said, "Everything before 40 is research.  You only start living at 40 on."


At times, I wonder how I arrived at my career destination and remained for 11 years as I clean vomit, urine, poop and other body excrement all night long for patients and family members who at times yell at me because of their own pain and fears, as I, all the while try to keep calm and act like the healing agent they need me to be.  I've been yelled at by overworked and frustrated doctors, management in fear of losing accreditation for the hospital and even by some burnt-out nursing collegues.  I've questioned my sanity and whether it was all just a waste of time.

Then, I remember the time I was there as a listening ear for the terminally-ill young man who was afraid his one year old daughter would lose all memory of him if he dies;  the homeless drug addict who cried and told me as I handed him a kleenex that he felt ashamed to let his successful daughter know where he is because he doesn't want to worry or disappoint her; the nonegenarian who died alone in the middle of the night with no one beside her except myself as I said a silent prayer for a peaceful passing; the terminally-ill mother of an 11 year old boy with autism worried about the care of her son after her passing and reassuring her of the vast resources available to help her son and encouraging her to visualize health and wholeness in her body; the mother of a terminally-ill 18 year old as she bear-hugged her son who writhed in pain where no analgesics could touch as I try to maintain my composure and be a healing presence that reassured her our team will do the best we can to find something that will ease the pain; the patient whose countenance was so beautifully benevolent even before he began to speak that I had to ask him what his profession was to discover that he is a psychologist who does art therapy with abused foster children.

I've come across pillars of society such as school teachers and politicians who were vile and disrespectful to all the staff and then to come care for a most benevolent construction foreman who worried about the employees under him who drank away their paychecks while their children and wives went without.  I know what bone-tired really feels like and have collapsed onto my sofa as soon as I get home after work snoring loudly as my toddler pries open my eyes wanting me to play with him.    I often tell myself I would rather deal with the excrement that comes out of human bodies than that that comes out of human hearts and mouths (my stint at working at a law office comes to mind).

And then there is Lucas.  Being a nurse has definitely prepared me better to take on the challenges of having a medically fragile child.  And, having a medically fragile child has made me a better and more compassionate nurse. 

In hindsight, I realize, my career choice wasn't a mistake after all, but an awesome honor and privilege. I was able to experience life and touch it in the most intimate way possible and it has broadened my perspective on life, death, illness, health and disability.   What a magnificent journey it has been. 

This journey was all definitely worth it.

My apologies to Daniel for not appreciating what he saw in me when I was a teenager.  

**************

   A student once asked anthropologist Margaret Mead, “What is the earliest sign of civilization?” The student expected her to say a clay pot, a grinding stone, or maybe a weapon.

Margaret Mead thought for a moment, then she said, “A healed femur.”

A femur is the longest bone in the body, linking hip to knee. In societies without the benefits of modern medicine, it takes about six weeks of rest for a fractured femur to heal. A healed femur shows that someone cared for the injured person, did their hunting and gathering, stayed with them, and offered physical protection and human companionship until the injury could mend.

Mead explained that where the law of the jungle—the survival of the fittest—rules, no healed femurs are found. The first sign of civilization is compassion, seen in a healed femur.

Happy 9th Birthday, Luki! A Quarantine Birthday.

May 19, 2020, a quarantine birthday. We were supposed to be at Disneyland but we are still under quarantine due to Covid 19.  Luki turns 9!  We stayed home and had Indian takeout for dinner.  Luki bit into something really spicy and had a major meltdown but other than that, it was a nice birthday dinner. 

I always try and make an video every birthday to capture just how far he has come in his development and growth.  As he turns nine and physically more heavier and verbally more louder especially when he screams, I worry about the next phase of life and what is to come.  Will I be strong enough to handle him when he has meltdowns?  Will I be physically strong enough to carry him?  These questions rest in my heart as we approach the future.  

https://www.youtube.com/watch?v=IIOq-MUxRxA&feature=youtu.be

He liked his cake!

Poor Luki, his mouth was burning!

TaeTae was so supportve

after eating something too spicy, we had a big mess at the table

I ordered everything mild but then again, it is Indian food...

Bioavailability of CBD: Expensive CBD Oil Literally Flushed Down the Toilet!

Bioavailability of CBD oil based on route of administration

WTF!! The bioavailability of  cbd oil I've been giving L orally  is only 6-20%.  !  I've been literally flushing down expensive oil down the toilet all this time! I wonder if this is why CBD doesn't work for so many with seizures.  One has to consider the variability on absorption rates being different as people's gut health varies.

 The most bioavailable route seems to be vaping and even with that you only get at most above 50%! How do I vape for my 8 year old boy?  I wonder if a nebulizer is available similar to breathing treatments given by respiratory therapists to people suffering from respiratory illnesses....

Intranasal Bioavailability of CBD
Product Types	Bioavailability Rate
CBD vape oils CBD vape pens CBD vaporizers	34% to 46%, up to 56% Effects felt within 10 minutes

Sublingual Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD tinctures CBD sprays	13% to 19%, up to 35% Effects felt within 5 to 20 minutes

Oral Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD edibles, like chocolate or baked goods CBD concentrate added to water or food CBD capsules CBD gummies	6% to 20% Effects felt within 30 to 120 minutes

Topical Bioavailability of CBD
Product Examples	Bioavailability Rate
CBD salves CBD creams and lotions CBD serum CBD lip balms CBD transdermal patches CBD suppositories	Low, although higher with transdermal or rectal Effects felt within minutes

47 Year Old Man with Prader Willi Syndrome and Venus Telepathically Reads Luki

A few nights ago, I took care of a 47 year old man with Prader-Willi Syndrome.  He mostly slept for me as I took care of him during night shift but in the morning I met his mother who shared many stories of what it was like raising a special needs son.  She told me that although many people love his gentle presence, he can be a bit hard to manage at home.  She stated that she is a recent widow and it has become harder to take care of him by herself.  She is tired and is having her own health issues to deal with.  His sister, who has her own family gets very short and impatient with him although his niece seems to know how to calm him down and take better care of him.  She shared that in her absence she worries about his care and placement and wonders if her daughter will take care of him as she has hoped.

Once she sent him to a summer camp for people with intellectual disabilities through AbilityFirst, a program I am interested in sending Luki at some point in time in the future.  When speaking to camp counselors, he stated that his mom hits him at home.  She adamantly denied this and I believe her because I saw how tenderly she took care of him at his bedside in the hospital.  This revelation prompted a whole child protective services investigation and he was whisked off to foster care  late at night when social workers whisked him away in an unmarked car.

What a scary thing to happen.  I wonder why he told others he was getting abused at home.  Could he have been ill-treated by  his sister but mistakenly blamed it on his mother?  Or, due to frustration at times, she spoke and treated him harshly  and he took her words and actions out of context?

Out of frustration when Luki is being very difficult, I have had to be stern with him only to find him cry in the saddest way possible that my heart ached for him.  His eyes would fill with tears and he would give me a big hug as if to convey an apology.  It breaks my heart when he does this and I know his tantrums are not of his choice but a discomfort? pain? fear? that I know nothing about and can't fix.  It's a hard life sometimes living with Dup15q.

I came away from work that morning having learned a lesson from this man with Prader-Willi Syndrome and his mother.  I vow to be more tolerant of Luki when he is having a fit and I hope to never have CPS involved in our lives.

On another note,  I spoke with Venus, a self proclaimed "telepath, empath, all the clair's" to get a peek into Luki's head.  I like to consult Venus every so often to find out what his really happening with Luki.  This is the closest way I have of "communicating" with him as he is still nonverbal.   Whether it is true or not, I really don't know for sure but it gives me much comfort and greater insight about him and for that, I am grateful.

  In this reading, received on her radio show, January 16, 2020

Disney Wonder Cruise 2019