Charlotte's Web CBD Hemp Oil

After last week's seizure scare, L is back on Charlotte's Web hemp oil.  I re-ordered a bigger bottle this time and I am hoping it will last at least six months.  5000 mg came in a 100 ml bottle and I have diluted it into a 500 mg concentration in the 30 ml bottle I kept from last year.  I diluted it with cooking hemp oil (non medicinal whatsoever although it touts to have high DHA) from Whole Foods so that I am administering the recommended pediatric dose as outlined in the Cannabinoid Dosing guideline found on theroc.us website.  L hated the taste of the cooking oil so I squirted a bit of peppermint oil left over from the holidays into the new dilution.  He was OK with the new taste maybe because it comes closer to the original "mint chocolate" flavor he is used to.

This is the calculation I used to dilute the stock 5000 mg by one tenth.

(5000 mg/100 ml) x (x ml) =500 mg

x = 10 ml.

So, I took 10 ml of the stock bottle and added it to 20 ml of Nutiva hemp oil from Whole Foods with a little squirt of Neilson Massey peppermint oil for a final volume of 30 ml containing 500 mg.

The formula theroc used for dosing is:

(weight)x(mg/lb) =(total daily dose) then, (total daily dose) divided by (#of administrations)=individual dose.

The recommended mg/lb for non medically sensitive children is 0.5 mg/lb/day in 2-3 divided administrations.  This is the number I used for L.  They recommend 0.25 mg/lb/day for "medically sensitive" pediatrics...not exactly sure what they mean by "medically sensitive" , perhaps having active seizures?

So, for L, the calculation came out to be this:

(32 lbs) x (0.5 m/lbs) = (16 m total daily dose) / (2 administrations) = 8 m twice a day , once in the morning and once before bedtime.

So, now I have to calculate how much in ml I need to give him from a stock of 500 mg in 30 ml solution.

(30 ml/500mg) x (8 mg) = 0.48 ml of a 500mg/30ml concentration.

I need to give L half a milliliter of my dilution twice a day per the dosing guideline.  The squirter in the 30 ml bottle conveniently shoots out about half a ml so I squeeze the dropper directly into his mouth.

The 5000 mg stock bottle should last us at least 10 months. The cost estimates out to be about $30 per month which is a pretty good deal compared to buying the 30 ml bottles at $70.

We still have not done an EEG so I can't be sure he is having seizures but I am using the supplement prophylactically and for it's neurogenerative properties.

I found these two interesting charts at a marajuana dispensary clinic in LA.  I am not sure if the CBD (blue dots) the chart indicates is the same as hemp from Charlotte's Web as there seem to be soo many strains out there.

A Periodic Table of Cannabis Strains

No side effects yet but will keep my eye out for any, if at all.

Will need to consult a weed doctor once he turns 5 years old so we can get a letter for reimbursement through the healthcare reimbursement account.  They won't see children under 5 and L will turn 5 in two months. Gabe said it may not work since hemp is still federally illegal. It doesn't hurt to try.


UPDATE: Mar 19, 2016:
We have noticed that L no longer needs his afternoon naps!  Around 3 PM he is usually wiped out and took 1-2 hour naps on most days.  After starting Charlotte's Web, he seems more alert and energetic and does not want to lay down for his naps!! He used to nap for 1-2 hours, have dinner, bathe and go to bed around 9 PM.  Now, we are able to bathe, have dinner and get ready for bed by 730 PM and he sleeps until 700 AM.  On a few days he woke up around midnight and was bouncing around but went back to bed within 30 minutes for a good night's sleep.

WebMD states,  "Your child will stick to an afternoon nap until they are anywhere from 2 1/2 to 4 years old. Some 3- or 4-year-olds still take an afternoon nap, but 6-year-olds don't nap."

I am considering this great progress!

The Hero's Journey..A Tale of a Special Needs Parent.

I am a huge fan of Oprah Winfrey's Super Soul Sunday on her OWN network and although I don't have much time to watch television, this show is a treasured indulgence I try not to miss every Sunday.  On one particular episode, Oprah had Elizabeth Gilbert, author of Eat Pray Love to speak about her interpretation of the Hero's Journey as defined by  Joseph Campbell.  What is the Hero's Journey?  Elizabeth enlightens us in her interview:

"Joseph Campbell the great 20th century scholar and teacher, a real master, a real encompassing genius spends his entire life studying the myths fairytales and religious origins of every culture on earth, looking for common threads and he discovered that there is this one story that never stops being told.  And it has been told since we became human, we are telling it now, we tell it in every language of the world, it never goes away and it is the Hero's Journey and it's very recognizable, it's Luke Skywalker, it's Oddysseus, Moses, Nemo,Bambi and it's about a restless youngster who gets called to the journey, goes through the road of trials, suffers through the dark night of the soul, finds his teachers, faces the battle and loses his fear..that is the shorthand for the Hero's Journey. We need that story, it is a beautiful story, it inspires us, it shows us the way. ...  The call starts the thing, and then the refusal of the call.  First comes the call and then comes the refusal of the call; don't ask me to do this. Take this cup away from me.  I am not a hero, don't look at me I am not a hero . I don't have the power, I am just a kid I am just a regular guy.  The call won't leave you alone, though. And then you begin the journey and then comes the road of trials which we all know because we have all been there ."

The hero's journey doesn't necessarily have to be about going off to far off places slaying dragons and returning home with gems of wisdom.  As a special needs mom, the hero's journey is an internal one where I slay dragons that reside deep within my own mind and usually the demons go by one name and that is fear.  Of course, consciously I have not taken on this calling voluntarily; although, some folks of a metaphysical bent would argue that yes, I volunteered in the heavenly realms when I was with God to take on this challenge where everything was perfect and there were no worries about the trials and tribulations of the earth.  The plea to please take this cup away comes only after one receives the diagnosis that a child will be somehow less than, disabled and flawed. 

Elizabeth Gilbert: You can answer the call or you can refuse the call. ..

Some may argue that being a SN parent is not heroic at all. Some even take offense to being called special themselves and it irks them when told ,"God gives special children to special parents".  I think parents of special needs children are heroic because they answer to the challenge by accepting their children and loving them regardless.  I have heard of many abandoned babies in the NICU whose parents are unwilling to care for them driven by the fear of what heartbreak lies in the future. Here is one story of a former nurse who adopts abandoned babies in the NICU due to their disability and illness (click here). There are also parents who put their children up for adoption or release them into the foster care system or relinquish them to state institutions. This act may also be deemed heroic if the decision is based on the best welfare of a child and comes from a place of love.  There was a case of one parent who upon learning that one of the triplets in the womb would have neurological complications  wanted to abort the fetus and when the surrogate mother refused, abandoned the newborn child.  And as disturbing as it may be, there are parents who do the unthinkable and "mercy" kill their own disabled children (click here) .  Yes, it is a choice to keep a special needs child and we may accept our lot kicking and screaming until the end but for those of us who never give up on our children, our choice is heroic, indeed!

  Last year, Steve Bundy, vice president of Joni and Friends and author of Another Kind of Courage, spoke to our small group of special needs parents at church and reassured us that having self pity parties is OK, we just shouldn't dwell in that space for too long.  Somehow, we need to transform our suffering into grace and turn it into something good.  Otherwise, it is all just wasted suffering. Elizabeth Gilbert talks about the dark night of the soul and what it is like.

 EG states, "Here is what is so very important to recognize: failure, disaster, shame, suffering and pain do not necessarily make you a better person unless you participate in turning it into something good. Never waste your suffering suffering without catharsis is wasted pain.  So this I learned from a friend of mine who is a paraplegic....an incredibly brilliant and graceful man named Jim MacLaren and he told me that. ... People always come up to him and say,'oh, you must have become so wise because of your suffering.' And he says, "there are a lot of people who suffered who are as stupid as ever." I chose to take that and use my power my thinking my force  to turn my suffering into grace. Otherwise, it's just wasted pain. You're just suffering for nothing, If you don't transform from your pain, then it was for nothing.  And that is your job.  You just suffered for no reason whatsoever...So I try not to waste my suffering.  When bad things happen I am like what can we grow from this."

I am certainly not going to waste the opportunity for personal, spiritual, emotional growth L's disability affords.  Somehow, I will need to  learn how to transform the pain I have into something beautiful. I pray God shows me how. Of course, there is always much to be learned from joy and I intend to make our lives as joyous as possible.

After going through the hero's trials, EG emphasizes that it is very important to share the wisdom learned from suffering with others:
"....that is the real final chapter of the hero's journey.  The climax is the battle, ...but the end of the story is you come back home and you share what you learned.  And, if you don't do that, then you don't really get the entire journey.  So, that is your obligation, too...This is what I tell people, going on the hero's journey is not something you do for you it is a public service because what you bring back from that to your community to your family will change and uplift them and they need that.   So, they need you to go over there and be a hero so that you can come back and show them everything you have learned."

I originally began this blog as a journal for myself not thinking others would actually read it.  But recently, another Duper mom blogged about how much my Instagram pictures of Luki at his best has helped her accept her own son's diagnosis. She has even written a blog about it, here.   That is so humbling to hear and I am so happy for her and for me that I was able to make a positive difference in another person's life.  It is the best flattery I could ever receive!!!




(click here)

Race and Disability

The summer of my freshman year in college, my stepsister and my cousin's son went camping at Catalina Island for the weekend to enjoy hiking the trails above the terrains full of bison and to snorkel the warm waters full of colorful garibaldis under the sea.  It was a beautiful time and a memory I return to every now and then.  In hindsight,I realize now that it was also a magical  and treasured time when there were no worries of career, money, marriage, children...my life revolved solely around learning and exploring the world around me.   While we were returning to our campsite after dinner at Avalon and walking the paved road full of small golf carts that families rented to get around the island, we saw a lovely looking family of four, a mother, father and two happy, giggly boys in the back. The two boys about the age of 10 or 11 saw the three of us walking and yelled out "ha ha look! Ching Chong China man!"  and proceeded to stretch out their eyes to make them look smaller and slanty and drove off around the curb laughing like hyenas.  The parents heard their sons but said or did nothing as if it their behavior was all OK.  I wonder if they had yelled out "ha ha look at the niggers!"  it would still be OK...

Yet in another instance, while in one clinical rotation in nursing school, a caucasian classmate asked me, "So..why are you here?" Not like why am I in nursing school or in the program or that particular room... She meant to ask why I was living in the United States  because obviously I am not "American"by my looks and the sound of my name - never mind I am a US citizen and have been here most of my life and consider this my home and country.  She made me feel as if I needed to give an explanation and rationale for my being.  Is it OK to ask a white American the same question?

After 3 years of working as a legal secretary at a workers compensation law firm, I was fired for having "poor English skills". It didn't matter that I took dictations for over 20,000 correspondences that were mailed out to clients.  Forget the fact that English is my primary language. Someone did not like me and wanted me fired but using my "poor English"  as an excuse was the last reasoning I thought they would use against me.

African Americans were outraged this year because the Oscars had no black nominees.  They brought up the issue of discrimination of blacks in Hollywood and some even boycotted the ceremony.   Chris Rock, an African American who hosted the show, lamented the injustice throughout the show but yet saw no issue of using racial stereotypes about Asian Americans.  Here is an article about the uproar. Here

There are many instances of derogatory words or gestures about being Asian I have encountered throughout my life living in the States for over 35 years and it was hurled from all kinds of people from whites, blacks, hispanics and other races (!) and these experiences have made me a bit less trusting and willing to get close to people. These uncomfortable incidents have become less as an adult but having experienced these in the formative years of childhood definitely imprints an impression on the mind and soul about how to interpret the world and people around you and it is hard to reinterpret it another way as an adult.  My conclusion was that everyone is a little racist in one way or another.

On one facebook post, a Dup15q mom shared the discomfort she felt at a mall as passerbys stared and whispered under hushed breaths about her developmentally delayed daughter in a over-sized stroller for disabled children.  She felt they were judging her and her daughter and putting her down.  In a comment, another mom of a child with a disability in a similar situation shared how people passing by yelled out to her and her son that he needs to grow up and shouldn't be in a stroller at such an age.  The boy, upon hearing the remarks, started to cry.  It is heartbreaking to hear such incidents.  I am more worried about the treatment L will receive from adults in his life than by the behavior of children around him.  Age is just a number and there are so many immature and "developmentally delayed" adults who lack a sense of morality, compassion or empathy. This "developmental disability" is truly more unfortunate than what L will ever have!!

Racism however dressed in different forms is something I've just grown accustomed to and even have come to accept over the years.  There is just so much I can fight and I've had to learn to choose my battles.  I've reasoned that it comes with the territory of living in a diverse society and brushed things aside as ignorance and stupidity.  My hope was that people will learn someday and become better in the future.  Is it OK for me to have such a complacent attitude when insults are hurled at L for his disability???  How will I react?  One day, I know a situation will present itself.  Should the day come, I hope I don't go crazy and land myself in jail.

Is It or Isn't It?

This morning, Luki fell off his cat tree smack onto his back and head.  Thank God I recently purchased a rather expensive 4x6 cushion for the hardwood floor.  He is usually very good at holding onto thing when he is about to fall.  This morning, however, he lost his grip.  Unfortunately, I did not witness the actual situation that led up to the fall.  He did not cry but just lay on the floor looking up at the ceiling.  I left him there thinking he would get up and climb right back to his cat tree where he left Scout, his favorite teddy bear.  He did not.  I picked him up and transferred him to the sofa thinking he would be his active self but he was very quiet and fell asleep.  I went to finish fixing breakfast in the kitchen but something did not bode well with me.  I went back to check up on him and he was sound asleep.  This was 730 in the morning and he never falls back to deep sleep so early after waking up from the night.  I held him in my arms and shook him to wake him up.   He seemed so lethargic and hard to arouse.  I had never seen him like this before and was now panicking that perhaps he had experienced a seizure.

This is the timeline of what happened:

720:  Fell from cat tree (where he lives)
725:  Transferred to sofa where he fell into a deep sleep.  I held him in my arms and tried to gently coax him awake.
745: He finally wakes up but remains very quiet and withdrawn.

I called Kaiser to make a same day appointment to see his pediatrician but the lady on the phone advised that I take him to the ER.  I rushed to get his Dup15q information packet and we were out the door to Downey ER.  He was triaged immediately into a room probably because they felt he might have a brain hemorrhage from the fall.  I was more concerned about a possible seizure than any injury from the fall.  The doctor offered a CT scan of the brain but after reviewing the possible side effects, we decided his injury doesn't really require it.  The rays from a CT are 300 times that of a regular x ray and for a child whose cells are developing rapidly, a mutation can lead to greater problems down the line.  I requested an EEG but upon consulting with an on-call neurologist, we were told that an EEG after a seizure will not really reveal a whole lot.  I was given a referral to our regular neurologist for a follow up appointment.

Around 930 AM, L seemed to be back to his old self.  He ate some oatmeal, a dinner roll and half a banana and seemed alert and inquisitive of his surroundings.  I decided to send him to school today and advised the teacher to keep a closer eye out for him.

I am not sure what exactly L experienced this morning.  My gut is telling me he might have had an absence seizure.  I am hoping this is an isolated incident and that he won't be having these on a regular basis.  My sweet precious boy...I love him so much. My heart breaks today.

UPDATE:  I received a note from his teacher that L fell asleep from 12:00-1:10 during circle time.  Highly unusual for him unless he has been fussy crying and sick.

  I have reordered the CW Hemp oil.  I gave him a double dose of fish oil and the CW hemp oil today.  I reordered a 5000 mg bottle  and will be dosing based on the company's dosing guideline.

The Brave and the Brokenhearted

"We are the authors of our lives. We write our own daring endings.  We craft love from heartbreak, compassion from shame, grace from disappointment, courage from failure. Showing up is our power. Story is our way home; truth is our song; we are the brave and brokenhearted, we are rising strong."  

Life Manifesto by Brene Brown 

As I scrolled down my Facebook feed yesterday, I was bombarded by people posting pictures of themselves wearing blue to bring awareness to Rare Disease Day and Dup15q Syndrome.  I was blown away by the whole student body of one Alaskan Elementary School who showed up wearing blue in support of a fellow schoolmate with Dup15q Syndrome.  As happy as I was to see so much support and awareness being brought on by so many people throughout the world, my heart was heavy with a sadness that my own kin are not capable of showing such support for L. My siblings seem too preoccupied with their own lives and problems to even consider L.  I'm not sure they are even aware of his condition.  I wonder what they live for and what matters to them in life.  We have grown so distant over the years that they are no more than strangers in my life.

I also wonder about the fate of people with intellectual disability in the third world.  I have heard that autism doesn't exist in parts of Africa and other third world countries but  I wonder if that is really true.  When one can barely feed oneself and put food on the table for the family; when sanitation wreaks disease and life and death is a pulse of everyday worries, can people really take valuable resources to care for someone with a disability?  Every day is a battle for survival and when even one's neurotypical children are in want, how easy it must be to give up the child with a disability.  What happens to them?  In the society I live, I am fortunate enough and feel it even an indulgence to raise an intellectually disabled child.  Would I be afforded the same privilege had I been living in a mud hut in a third world country with no health care, poor sanitation and lack of food and education?  I wonder what happens to these children/ Are they murdered?  Given up for adoption?  Where do they go? My mind is haunted by the questions. The web site Two Thirds of the Planet does a wonderful job of sharing stories of how people with disabilities are treated around the world - "without the inspiration porn".  (Thank you, Adelaide DuPont for the link!)

In Canada (see video below), a father of a child with Down's Syndrome purges his guilt online after not being vocal about educating strangers about his son's condition.  I empathize with this father.  There are so many opportunities for learning and teaching but not all occasions are appropriate. When we stumble, sometimes we can become our own worst critic.  I hope he found redemption through making this video.  I, for one, have learned so much about the meaning of learning and teaching. God bless him.