It's Dinnertime at the Ahn Household.

My very responsible and dependable husband who always pays the bills on time and makes sure we are kosher with the IRS every year, has an annoying habit of sometimes repeating what I stated back to me.  As one example, the other night I stated that I have an EKG test in the morning as I checked the wall calendar.  A few minutes later, he repeated the obvious to me and said, "you have an EKG test tomorrow" as if I needed reminding or as if he wanted to claim that he knew before me.  This happens periodically and it annoys and baffles me as to his motivation but still, he has enough redeeming qualities for me to overlook this pet peeve of mine and keep him.   My little seven-year-old son cannot finish a meal by himself unless he is near starving without me having to feed him.  He sees Lucas, my 13-year-old special needs son being fed every meal and assumes that it is the parents' job to feed him, as well.  I have stated many times that he is quite capable and different from Lucas who needs extra help but at every mealtime, he starts eating independently but then refuses to finish his meal and would rather play or watch videos.  This kid just doesn't eat much to begin with.  Not wanting to waste food, I end up feeding him until he is done. Otherwise, his leftover becomes my dinner and many times I have felt like the human garbage disposal and although I could get a fresh plate of food for myself, the thought of waste doesn't sit well with me. The beneficial consequence of this habit, beside not wasting food, is that I have lost weight as my portion size has shrunk. 

Yesterday, Lucas came home with a note from school suggesting that he may have had a seizure in class and that he was very upset and screaming for a few minutes.  Doctors may not have classified his screaming fit as a type of seizure but I am convinced the times he stomps, screams (as if it pain or in abject torture) and biting his finger are a yet unclassified seizure type.  It isn't what is already known such as absence, tonic-clonic, head drop or myoclonic.  If I had to name what I witness, I would call it the scratch-and-pull-mommy's- hair- as-I-hit-scream-and-stomp-and-as-if-I-want-to-crawl-out-of-my-skin seizure type. That is quite the adjective no professional would use so maybe the closest could be "tonic-clonic, type 2" or some such nondescript clinical name which absolutely does no justice to what actually transpires during one of these spells. 

 Before dinner, out of the blue and unexpectedly, Lucas had one of these seizures which lasted for 30 minutes.  We are closely surrounded by houses on all sides and so to prevent any suspicion of child abuse (God forbid some Karen would call CPS) we immediately shut all windows and doors. I should know better than to try to hold him or calm him down but doing nothing and just watching makes me feel so helpless and useless and within seconds he has grabbed my hair and pulling it ferociously and has scratched my legs and arms.  Imagine someone drowning in the high seas and they are grabbing onto any raft for dear life.  That is exactly how I would describe Lucas in this seizure type.  Einstein was right, time is relative and 30 minutes can feel like an eternity with no end in sight.  Usually, I can accept his condition with a sense of defeat and resignation but this time, I felt enraged that he has to suffer so horribly, and I have to be injured; his little brother has to be startled and scared and his dad has to feel helpless.  Without meaning to or even conscious of my actions, I projected all my rage and anger to the two people I love the most beside Lucas which is Tae and my husband. My short Korean temper got the better of me and I yelled at Tae for not ever finishing his meals by himself and not cleaning up after his toys.  I screamed at Gabriel for stupidly repeating things I have already stated.  I might have kicked a few items on the floor, too for added effect. They both fell to silence, stared at me and proceeded to quietly finish their food. Gabriel didn't try to calm me down, drown out my tantrum or match my energy with his own but allowed me to ride it out on my own terms and for that I am forever grateful.  

This is the first time I really wished his syndrome away.  The first time I said I wish he never had Dup15q Syndrome and all the crazy seizure crap that goes with it and that he were just a normal boy who says things like "I love you, mommy". He is 13, almost as tall as I am and with a kung fu grip that gets powerful during fight-or-flight situations such as fighting for your life during an electrical firestorm in your brain. How will I manage him going forward as he continues to grow?  

When the ordeal was done, Lucas was back to his sweet self and even gave me his beautiful trademark smile and a few giggles.  I was so relieved to see him back to his cheerful self but I was still very angry, angry, angry.  It was as if a switch had been turned off and as if the incident never happened to him.  I couldn't and didn't do much for him but I wanted to make sure I was there for him no matter what, even if I got injured because that is all I can do, just be there as a standby witness to the torture so he wouldn't have to endure it alone.  That is the highest manifestation of how I can show my love for him.  Witnessing a loved one going through something horrendous can be just as tortuous as for the one going through the ordeal.  And it wrings my heart that I can't do more.  The happy ending for me was seeing him smile and although he can't talk, it was as if he were saying, "thank you for being with me through this".  

The next day I apologized to Tae for yelling at him during dinner and explained that it's because mommy doesn't like to see Lucas sick and having seizures and he replied, "It's ok mom. Don't worry, I understand.  I forgive you." For being 7, he had to grow up fast and develop deeper insights into situations than I had wished.  Hopefully, though, that is a good thing.  

So, there you have it, an exciting dinner time at the Ahn household with me, my husband, two boys and Dup15q Syndrome.  If I host a supper party, would you come?

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.

Realm of Caring's Charlotte's Web Hemp Extract and what It Can Do for Us.

Recently, I purchased Charlotte's Web hemp extract through Realm of Caring, a company that specializes in producing medicinal marajuana products such as endocannabinoids.  The hemp strain used to extract the oil is the same as that featured in the Sanjay Gupta CNN special report on the medicinal uses of marajuana for seizure control.  It is a strain that is high in CBD content and very low on THC hence making it not so alluring for recreational use but extremely potent in its effect on neurogenerative disorders such as seizures, autism, cerebral palsy and other brain related disorders.  In fact, the product is named after a little girl, Charlotte, in the documentary whose seizures were almost completely reduced after taking the oil.  Anecdotal studies show it  helps in seizure control, tics brought on by Cerebral Palsy and  mitigates symptoms brought on by other neurodegenerative disorders.

No studies are currently underway to see the benefits of endocannabinoids in neurodevelopment in cases such as autism. I have relayed contact information for GW pharmaceutical's [a British company that currently supplies pure endocannabinoids for clinical trials at UCSF and New York University] public relations director to Dr. Gargus, director of the new Center for Autism Research and Treatment center at UC Irvine to possibly start a line of clinical trial studies to see its effect on autism.  I am not sure what he did with the lead; hopefully, one of his colleagues has grabbed the idea and is running with it.  Anecdotal stories of endocannabinoids having neurogenesis effects is the bit of hopeful information that led me to run out and get the hemp oil extract for Luki's Dup15q syndrome. 

I am quite surprised by how easily accessible it is to get this stuff.  I just ordered online even without a prescription from a "weed doctor".  This just goes to show how safe the product is and even with over dosage, there is no need to call poison control unlike most prescription antiepileptic drugs currently on the market. 

Mr.L is currently on day 3 of use.  I am slowly titrating it up from 5 drops a day to 10.  Recommended usage on the bottle suggests 30-40 drops a day, three times a day.  Not sure if this recommended dosage is for seizure control but I plan to just give 5 drops b.i.d. and see what, if any, cognitive progress he makes.  As for cost, the 200 mg bottle cost $50.  I have read somewhere that in order to get successful seizure control, $100-$600 per month would be the cost for treatment, depending on the patient.  10 drops a day may last a month or two. 

We are not seeing any effects, yet, of course, it is too early.  But, maybe in a week or a month, a light bulb will go off in his little head. Crossing my fingers and hoping for the best.