An Unforgettable Thanksgiving Holiday. Part 1: Labor and Delivery

In the early morning of November 22, I made my way over to Kaiser Montebello clinic for my regular prenatal checkup at 31 weeks gestation.  I had been feeling pretty tired the past few days with more swelling in my feet, face and hands but just brushed off the discomfort as normal symptoms of pregnancy; although, I had been complaining for a while to my OB and anyone who cared enough to ask that this pregnancy felt a little bit harder than my first with Lucas. I was looking over at our family Christmas picture for our holiday cards taken only two weeks prior and remember thinking to myself that I didn't look myself but looked so so tired and heavy like someone about to pass out.  Again, I rationalized that perhaps due to my "advanced maternal age" pregnancy is just a bit harder for my body. I had asked for work excuse notes on a couple of occasions after my prenatal visits only to be told that I was "just fine" and that I wasn't really sick enough to warrant a day off from work. The nose bleeds, the tiredness, backache, swelling were all just part and parcel of being pregnant is what I was told.

  My OB had a family emergency so I was seen by another OB, Dr. Perez, who had the look of alarm on her face after reading by blood pressure and urine dipstick results.  My systolic BP was 146 compared to my normal SBP of 90-100's.  I have been spilling protein in my urine (+4) and had considerable weight gain (10 lbs in 2 weeks) which showed through in the edema on my feet, hands and face. Just a few days earlier, we had gone to Big 5 to buy compression stocking for my arms and ankles.  I told Dr. Perez that I don't ever remember having hand swelling accompanied by hand joint pain upon awakening in the morning with my first pregnancy. She ordered me to drive to the hospital right away and check myself into the L&D department at Baldwin Park saying that they may keep me there for a day or two for closer monitoring.  Even at this point, I didn't feel any alarm thinking they just need to do a NST on the baby and everything will be OK.  Fortunately, I had already packed by hospital suitcase a few days earlier along with my cord blood kit.  I had casually commented to Gabriel a few weeks prior that I had a very strong gut instinct that I didn't think this baby will make it to full term and that I had a feeling he was going to make his entry earlier; although, I didn't think it would be dangerously early.  After dropping Lucas off at school, Gabriel met me at home, loaded my luggage and we headed off to the hospital.

The nurses set up a room for me, rechecked my urine protein level, drew some labs to check my liver enzymes and did a set of vital signs.  I was a bit disappointed that we had to check in at Baldwin Park as I had hopes of delivering at Kaiser Sunset to be closer to my in laws who can watch Lucas so that Gabriel can be with me during delivery.  The liver enzymes were a little bit elevated by not too bad.  My BP was still in the 140's but slowly creeping up and my urine protein was at a +4.  At this point, the doctor decided to start me on a magnesium drip for 24 hours after a bolus dose.  We were told that the baby will not make it to full term and at the latest would have to delivery at 35 weeks gestation and I would have to stay at the hospital for three weeks prior to delivery for close monitoring.  We were anticipating a long wait and 3 boring weeks of hospital stay but my main desire was to keep the baby in my womb for as long as possible. We had heard that a day in the womb is equal to 3 days in the NICU.  We also tried to make arrangements with Gabe's parents to babysit Lucas after school but we found out that at the week of delivery, they had already made plans to go on a cruise to Mexico.  Of course, we can't just get any babysitter for Lucas and his usual nanny was already too busy taking care of her new granddaughter to help us out. At this point, this was our main concern above any concerns related to complications of the birth since we were still hopeful we had time.

On the third day, my liver enzymes had tripled and my SBP was now in the 160's so they gave me another 24 hours of magnesium and an iv push of a dose of labetolol to control the BP.  I also received two shots of a steroid injection to help speed up the development of the baby's lungs after delivery.  Being on an uncomfortable gurney for 48 hours on a magnesium drip while pregnant is by far one of the most uncomfortable experiences I have ever had.  On Thanksgiving Day, my brother--in-law's family came down from San Jose to spend the holiday with us and have dinner at the Sheraton in Universal City as we had done last year.  The following day, Black Friday, the doctor informed us that due to my unstable condition, they will have to do an emergency C section that very afternoon so that I will not develop the HELLP syndrome compromising my health and that of the baby.  From this point forward, everything seemed to happen so fast and yet it felt as if time moved in slow motion.  All the specialists like the anasthesiologist, neonatologist,and OB came and spoke to me about the risks and complications so as to obtain informed consent in writing before the scheduled surgery at 3PM.  My in laws and Gabe's family from San Jose  were coming to the hospital around 2 PM just to visit, not knowing at this point that delivery was going to happen an hour after they arrived.   Around 1PM the doctors said they were going to do the surgery right away because my labs were looking even worse.  We worried about who would watch Lucas during surgery and if Gabe would be able to be in the OR with me to witness the baby's birth. Fortunately at this time, as if by a miracle (to me, at least) Gabe's family had already arrived early to the hospital and within an hour of their arrival, the baby made his entrance into the world at 1:55 PM with daddy's presence in the OR.  Tears of joy flowed after hearing the baby cry and learning that he had good APGAR scores.  

A Broken Hallelujah, A Shattered Praise

About a decade ago, when I moved back home to care for my dad in the end stages of liver cancer, my dad and I had gotten into an argument as we often did those days.  He was irrational and I was frustrated and stressed from the worries of my future and the fatigue of being his caregiver.  I remember how the neighbors laughed at overhearing our family discord and I thought how callous people are and how foolish is all of life.  And, it made me conclude that the majority of people are not idealists with lofty ambitions to better humanity and help the plight of the suffering, but  rather, petty, self centered, greedy beings here to satiate their own immediate needs which includes only their own kin and kind.  A decade later, as a mother of a child with special needs, I reflect back on that time and wonder to myself what chance in hell my son has in the world.  It is no wonder the world has all the problems that it does which seem insurmountable; humanity is not this noble race of people who are yet capable of divine ambitions.  We are slaves to our own biological imperative, the law of nature which can be cruel and merciless.  On a radio show, I learned of a type of wasp that would take "hostage" a cockroach for months as its larvae suck all nutrients from the cockroach's body until it dies as a shell of emptiness.  And, I wondered how a loving God could create such an evil mechanism for life as this?

And still, I cling to the hope of an all loving being that cares for everyone and is available to everyone who needs spiritual nourishment.  I've given up the hope that this God can solve all our problems and heal all wounds; no, the only assurance I have is that He loves us unconditionally until the ends of the world and I have accepted that that is enough.  It has to be enough for all other expectations lead to despair and disappointment.  "Hope is the bane of the idealist."

So, I can still sing and praise God albeit the song is tinged with a hue of melancholy and all I can sing is a "broken hallelujah and my offering is but a shattered praise".  It may not sound the prettiest but I refuse to give up hope that He listens and consoles me in my darkest hours.

"How does the Truth that your Child is Made in God's Image Compare with your Experience in the World as a Parent with a Child with Special Needs".

Disability service (click for link)

A few weeks back, Evergreen Baptist church held a disability awareness service led by our Journey's group leader, pastor Julie Ono.  Unfortunately, I was unable to make it as it was my weekend to work.  Although I encouraged Gabriel to attend, he seems a bit reluctant to attend church without me.   Fair enough, I think he still identifies more closely with his Catholic faith.  Children and young adults living with disability in the church community got up on stage and read bible passages or sang songs.  Videos of some family members were also showcased and Julie shared stories of families who were treated unkindly by other church members for their childrens' disability.  In one story, she recounts how a pregnant mother with a child with dwarfism was approached by another church member and admonished for trying to have another "deformed" child.  Hopefully, stories like this helps others to be more sensitive and careful in what is spoken to families living with a disability.  

This sermon was also a "coming out", if you will, for pastor Julie to share her struggles living with ADHD.  It was very brave of her to share her own struggles and expose her vulnerability and I appreciate how truly  authentic she is with everyone and in my mind, it gives greater credence to her as a leader.  

In one segment, a videographer visited one of the Journey's meeting to discuss the question of  "How does the truth that your child is made in God's image compare with your experience in the world as a parent with a child with special needs". 

 You can see the video on the link here: 
Journeys testimony  password is defy123

We have yet to experience unkindness from strangers for Luki's disability.  I think most people just don't care.  We live in a huge impersonal metropolis of LA with over 20 million people and I think people  are just too consumed by their own lives, their own problems and worries to take notice of us.  Which is a good and a bad thing.  We tend to sequester ourselves to our own little sphere of family, friends, church and the invaluable online Facebook community of other families living with Dup15q Syndrome.  

The thing I am recognizing is that everyone can learn something about themselves from people living with disabilities and their families.  It is not just the person with the highest IQ living in the loftiest ivory tower of knowledge who can impart wisdom and truth.  We can learn from everybody and encounters with people that have disabilities shine a mirror into our own hearts in a very visceral and immediate way.  Perhaps, everyone we meet, whether they have a disability or not, serves the purpose of helping us define and figure out who we really are at our core.  In the case of encountering disability, for some, it stirs up feelings of  disdain and the urge to reject or express disgust.  For others, it may be a sense of  pity and relief that it is not them or theirs that have to go through such difficult ordeals. But,  there are those more refined souls who have great compassion and understanding for God's deeply loving purpose for sending His children in such tortured bodies and minds. 
I am not saying those with a disability are all knowing and above others as some would like to claim and it would be a disservice to treat them as such as it ostracizes them even further as being "other" and "different".   They are just people like everyone else with their own issues, weaknesses and faults and they should be allowed to experience their humanness just like everyone else without ridicule or shame.  But having said that, as Lacey's mom noted in the video, I can't help but agree that people like Lacey are free from racism, sexism, hatred, resentment,classism, etc that most typical people are captive to.  Lacey just smiles at everyone without refrain which  leads me to believe that perhaps people like Lacey are more closer to the divine than human.  
Hopefully, this attitude of understanding becomes habit and spills over among all people, not just those with a disability. Can you image what a wonderful world we would live in if that were the case?  It is to reach this state of understanding , acceptance and love among all people that perhaps serves the purpose of having disability in our lives.  

Our Latest Adventures in CAM (Complementary Alternative Medicine): Herbs and Accupuncture.

L gets accupuntrue in the head, or at least we tried.

L doesn;t like to be fussed with today.

After seeing amazing seizure control with my "miracle oil concoction" for almost 60 days straight, I got inspired to further investigate into this world of CAM. After contracting the "summer flu" from me, L started having seizures again.  The physician advisors for Dup15q mentioned in one of their science conference presentations that an illness such as the flu can trigger seizures even when  once dormant.  L is still congested and coughing and so am I for over  a month from whatever this nasty bug is.  I've tried the "z pack" with not much improvement.  Really, I think this is viral in origin. I am hesitant and scared to start any cold medicines as I've heard from some Dup15 parents that antihistamines have triggered their child's seizures.  I have L on a homeopathic remedy but using it sparingly. 

After almost 60 wonderful days of seizure control,  he started having one every 5 days, then every 3.  We are now back at one a day in the morning after he wakes up from sleep.  The only known trigger to his seizures seem to be deep sleep.  Now, where he never had afternoon seizures, if he naps in the afternoon for a long period of time (2 hours or more) he is more likely to have a seizure.

Last Monday, I took L to see an acupuncturist and an Oriental Herbal Medicine doctor at Dong Guk University of Oriental Medicine in Los Angeles in hopes of really stopping the seizures once and for all and getting him off  all AED's.  There are three campuses for this university that specializes in oriental medicine and one happens to be located in the city I was born in Korea, KyungJu.  It is a reputable university that works with western medicine to treat patients.  I've even heard of surgeries being performed with no anesthesia  with complete pain management only with acupuncture.  Although at times I have a disdain for the impersonal urban sprawl connected by congested freeways that is the metropolis of LA, I am grateful for its diversity where I can get access to things like Dong Guk University or anything else from around the world. People living in other parts of the country or the world can't say the same.
I remember a scene from my childhood in Korea in one of the rural villages, an elderly grandmother was brewing her herbal tea on an open fire outside her front yard.  The smell is so distinct and no child ever likes to drink the bitter brew.  In my own  household, my aunt would occasionally see her herbalist, come home with bits and pieces of barks, strange exotic looking leaves and fruits in paper packages and make her brew in a ceramic kettle on the kitchen stove and stink up the whole house (if not the whole block) for days.   At times, I would find what looked like centepedes and deer antlers.  She would sometimes have the kids drink it and it was horrible.  As I get older though, the rare occasions that I smell the Korean herbal medicine, makes me nostalgic and long for "home". 

Late in the evening when everyone is asleep and I am on the University of Google, trying to find what would help control L's seizures, I came upon this research paper Effect and Safety of Shihogyejitang for Drug Resistant Childhood Epilepsy.  The researchers claim they had great seizure control which was even better than the ketogenic diet.  I decided to take this paper to an herbalist at Dong Guk University in LA and have her mix the herbs exactly as specified in the paper.  The clinician, Dr. Lim, also a lecturer at the university said she is very familiar with different recipes for seizure control and has even gone to China to study the latest CAM for seizure control in children.  I handed her the paper and showed her the recipe and she said she needed time to translate it as it is all in Latin.  She told us to come back in two days and she would have the herbs ready.   I was expecting little pieces of barks, wood, leaves and such wrapped in little paper origamis but to my surprise, they were small pellets in powder.  She told me to dissolve it in a little bit of water or juice  and give it to L twice a day.  I mix the powder/pellets in his liquid resveratrol and a few drops of water then administer it in a syringe.  No more bitter teas to drink which is good because I worried whether L would take it.  The only thing she said she took out of the formula was the ginseng because it was "too hot" for an active 5 year old boy with lots of energy.  L does get winded after school and still requires at least an hour nap to get through dinner and bath at night.  She said to call her after 7 days at which time we should see some improvements.   Maybe the ginseng would have made it a lot more expensive, too. 

This is the formula specified in the article:
7.0 g of Bupleuri radix (Bupleurum falcatum L.), 4.0 g of Pinelliae tuber (Pinellia ternate (Thunb.) Breit.), 2.0 g of Scutellariae radix (Scutellaria baicalensis Georgi), 2.0 g of Zizyphi fructus (Zizyphus vulgaris var. spinosus), 2.0 g of Ginseng radix (Panax ginseng C.A. Meyer), 1.5 g of Glycyrrhizae radix (Glycyrrhiza uralensis Fisch), 1.0 g of Zingiberis rhizoma (Zingiber officinale Roscoe), 2.5 g of Paeoniae radix (Paeonia lactiflora Pallas), and 2.5 g of Cinnamomi cortex (Cinnamomum cassia Blume). The herbal decoction was made in the hospital pharmacy. All the herbs comprising SGT were mixed with 120 mL of purified water and then decocted for 120 minutes at 102°C to 103°C until half of the original amount of liquid was left. 20 mL of the decoction was packed into each vacuum pouch by an automatic packing machine. Patients of age five or older were asked to administer one pack of the decoction 30 minutes after each meal, three times a day. For patients under five, the daily dosage was adjusted based on the conversion table of von Harnack.



This table shows how the herbs work better than the ketogenic diet.
Table 5

Comparison to studies on ketogenic diet in patients with refractory epilepsy.

	Treatment	Number	Median ageat start of treatment	Response rate						Retention rate
				At 3 months		At 6 months		At 12 months		At 3 months	At 6 months	At 12 months
				>50% reduction††	Seizure-free	>50% reduction††	Seizure-free	>50% reduction††	Seizure-free
Our study	SGT	54	16.5 months	68.5%	35.2%	44.4%	24.1%	22.2%	14.8%	81.5%	53.7%	22.2%
Kang et al., 2005 [18]	Ketogenic diet	199	57.9 months†	61.8%	35.2%	57.8%	33.2%	41.2%	25.1%	87.9%	68.3%	45.7%
Sharma et al., 2009 [19]	Ketogenic diet	27	2.5 years	59.3%	11.1%	48.1%	14.8%	37.0%	18.5%	88.9%	55.6%	37.0%
Suo et al., 2013 [20]	Ketogenic diet	317	39.6 months†	35.0%	20.8%	26.2%	13.6%	18.6%	10.7%	62.8%	42.0%	24.3%

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^†Mean age.

^†† >50% reduction included seizure-free cases.

SGT, Shihogyejitang.

Can Accupuncture help Epilepsy

We also bought an accupuncture wand which simulates accupuncture through mild electric currents.  L seems to tolerate it OK.  One can even purchase such a devise on Amazon. Link here.   We tried this for 20 minutes at night time.  Not sure exactly what it is doing for him though.... I think this would work great for my headaches.


Update: After 5 days of the herbs, L's seizure seem to have gotten much much worse.  They progressed from loss of consciousness to almost tonic clonic so we stopped.  These herbs don't seem to be good for L's seizures. May or may not go back to the clinic to give updates.

Back to square one.  Keppra increased to 1 gram a day with no real benefits noted.  L has developed a weird rash on his left cheek which I think is probably from the increased keppra.  sigh.....

2016 Scientific Symposium Two Sides of a Coin: Deletions and Duplications on 15q

Finally got a  hold of the  2016 Scientific Symposium (click for link) Two Sides of a Coin: Deletions and Duplications on 15q.  Dr. Shefali Jeste's presentation had a snippet of Lucas during a clinical trial study (at point 36:00).  It is amazing how far he has come in the last two years.  Looking back, he wasn't even able to sit on his own without support. He still has hypotonia and poor gait but has improved a lot since then.  He also did not have any seizures back then. For the last 40 days, he has had one day of seizure which I think is pretty good compared to daily seizure activity for five months straight. Hoping this trend lasts for a long time.  

Sleep Study

The above video presentation by Dr. Thiebert worries me a bit about possible seizures occurring during sleep in the night.  Although waking hour seizures are under control for L, I have no idea what is happening during sleep in the night.  He does occasionally wake up in the middle of the night but tends to go back to sleep on his own within 30 minutes to an hour.  Do seizures wake him up?  Seizures in the day time had the opposite effect wherein he would fall asleep for an average of 1 hour, post ictal.  An overnight EEG sounds like  a good thing to do.  Our neurologist hasn't gotten back to me about stopping keppra.  I am assuming no response is a good response as he usually got back to me almost immediately when things were getting worse.  

 We are going in for another similar study mid September at UCLA with Dr. Jeste.  

First Week of Kindergarten. New School. New Teacher.

New school.  New Teacher.   The kindergarten teacher at the new school who had been teaching for over 30 years just retired this year and we have a new teacher who has never taught special needs kindergarten before.  She said she has only taught second graders.  She seems a bit confused and nervous.  I asked for a class schedule and was told she hasn't made one yet... This is the second week of school.  She seems awfully worried about Luki's safety and insists on him having his helmet and knee pads on at all times.  I told her I want him to feel a bit more independent and not so restricted. They can get itchy sometimes and I don't want him having a meltdown due to discomfort.  We compromised by him wearing them on the playground only and not in the classroom. He has been having a tough time adjusting to kindergarten (crying at separation).  The new school time is 2 hours earlier than his PreK and early morning is the most vulnerable time for seizures, which doesn't help.  One time, the school nurse even called me to pick him up due to non-stop crying for 2 hours.
The new teacher and staff seem a bit baffled by Luki so I wrote up a little care plan and information  to help the teacher and aide feel less anxious and worried about him and to better understand his needs.  Hopefully, this helps.  

A little information about Lucas 

Lucas has a rare genetic condition called Dup15q syndrome which causes developmental delays, poor gait, speech delays and autism.  Here is a description of his condition:

Sensory issues: He has sensory seeking behaviors like rubbing his hand against the carpet or different textures. His chew toy necklace helps me calm down and feel safe. And, he uses it quite often.

Motor issues: poor motor planning, ambulatory with unsteady gait, hypotonia.

Therapies he receives:   physical, occupational, and speech therapy at school twice a week,

Special Diet:. Soft, easily digestible foods. Has difficulty chewing hard foods such as carrots, candy; learning to bite into a whole apple.   Needs assist with meals. Can use a sippy cup but not an open cup.  Needs practice putting cup down without spilling. Can use spoon once food is on the spoon but unable to scoop food independently. 

Medical conditions: Propensity for seizures; irregular EEG patterns.  His seizures have been controlled for the past month but we keep an extra close eye on him in the morning right after he wakes up which is when his seizures happen the most.  He has never had seizures in the afternoons or after about 10AM.  We are on a modified schedule in the mornings where he will be dropped off between the hours of 8AM to 9AM – depending on how he is doing upon awakening. 

Verbal: NO

Ambulatory: YES with supervision especially in the playground.  He loves to climb on top of things at home.

Dysphagic: NO

Emotional disturbances:  NO, very mellow personality but experiences high anxiety in unfamiliar places and situations.  He gets very scared and anxious at the sound of leave blowers, lawn mowers and vacuum cleaners. 

Favorite Food:  not a picky eater, eats almost all foods well as long as it is soft and easily digestible. He likes hot dogs, hamburgers, French fries, burritos, rice and beans, cut up apples, oranges, blueberries, grapes. We try to limit his intake of sweets (candy, cakes, sugary drinks) due to seizure risk.

Favorite toy: Scout, the talking dog. Toys that light up and make music.

Favorite DVD/tv shows: Baby Einstein videos, Preschool Prep learning DVDs, My Talking Toddler videos, Any children’s program with bright lights and lots of music. In pre-K, his favorite time was circle time when everyone sang songs. 

Special equipments:

Lucas does not wear leg braces; he sometimes wears knee pads just in case in falls on his knees but is not a necessity.  He wears glasses.  He wears a helmet which helps him to keep his glasses on. Otherwise, he likes to fling his glasses off. He likes to take his shoes off, too. Usually, he wears high tops. On very hot days, we try not to keep the helmet on too long. 

Goals:

1.We would like Lucas to gain as much independence as possible.  In preK, the teacher felt he did not need a 1:1 but one may be helpful for safety. 

2.We would like him to improve more in his hand – eye coordination like placing tokens in piggy banks, puzzles, using utensils to eat.

3.He is incontinent of urine and stool.  Potty training is a big goal we have in place. 

Dosage calculations of CBD, DHA and MCT for Optimal Anticonvulsant Properties.

Found an interesting article about the benefits of caprylic acid found in MCT oil I am supplementing L. I want to do some calculations to see if I am giving the right dose for optimal anticonvulsant effect found in this study.

Optimal anticonvulsant range was found to be 10-30 mmol/kg which showed reduced myoclonic and clonic but not tonic convulsions.  Higher doses seem to not be good. 10-60 mmol/kg actually impaired motor performance and lower doses showed little anticonvulsant effect.  So, I want to make sure I am not over or under doing it with this stuff for L.

If I were to give 10 mmol/kg (trying to stay at a conservative range) for L this is the calculation:

Caprylic acid molar mass = 144.21 g/mol

(144.21g/mol)(10mmol)(mol/1000mmol) = 1.4g in 10 mmol of caprylic acid:

This states that 1.4g is equivalent to 10mmol.

There is 7.6g/15ml of pure MCT oil per the bottle.

Therefore,

7.6g/15ml = (x)/1.4g;

x=0.71ml    This means there is 1.4g of caprylic acid in 0.71ml of the MCT oil.

Now, I need to calculate how many mls I need to give for his weight in kg.

Luki weighs 15.42kg.

0.71ml (x) 15.42 kg = 10.9 ml or approximately 11 ml (or little less than one tablespoon) of MCT must be given daily for optimal anticonvulsant effect.  

I am currently  only giving him approximately 4 ml per day so I can definitely double the dose but right now his seizures are well controlled.   I don't have access to the full article so I don't know how long the study lasted and the duration the caprylic acid was given.

____________________________________________________________________________-
 how much DHA I am actually giving L .

Molar mass of DHA: 328.488 g/mol

I administered 1.6g of DHA per day.

(mol/328.488g)(1.6g)= 0.00487mol(x)1000 = 4.87mmol total administered per day.

4.87mmol/15.42kg = 0.32mmol/kg

Wow, didn't realize I am giving him so little yet it makes such a huge and drastic difference!

_____________________________________________________________________

 how much I am giving L of CBD:

CBD molecular weight is 314.4617g/mol

I am currently giving him 16 mg divided into two doses as recommended by the pediatric dosage guidelines from theroc.org. Click here for details.

(mol/314.4617g)(16mg)(1g/1000mg)=0.00000508mol or 0.05mmol/15.42kg=3.3x10(3) mmol/kg

That is very little compared to the caprylic acid! Hmm.maybe I can administer a little more of this stuff..

__________________________________________________________________________
how much resverotrol I should be giving for the kind of seizure control found in this study:

The bottle of reseverotrol I purchased states there is 130mg/5ml.

I usually give about 3ml twice a day for a total of 6 ml per day..

 (130mg/5ml)(6ml) = 156mg per day is what I am giving now.  

The paper states 40mg/kg was administered for seizure control.

So, according to the paper, I should be administering (40mg/kg)(15.42kg)=616.8 mg!

(616.8mg)(5ml/130mg)= 24ml per day or 12 ml twice a day is what I should be giving him! That's a lot!

There is only 148ml in the bottle and this stuff is not cheap!  148ml/24ml =6.  A bottle will only last me 6 days!!

****The study involved a one time administration of  resverotrol before seizures were induced.  They don't offer any recommendations for a daily maintenance dose which is too bad.    But, at least it lets me know how much resverotrol I should give should he have a seizure.   

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I would like to add to the regimen some curcumin.  Here is an article that addresses the protective effect of curcumin against seizures and cognitive impairment in seizure induced rats.  They found that an optimal dose of 300mg/kg given for 30 days "significantly increased the latency to myoclonic jerks, clonic seizures as well as generalized tonic-clonic seizures, improved the seizure score and decreased the number of myoclonic jerks".  They also found reversal of cognitive impairment and oxidative stress when pretreated with curcumin before seizures were induced.


(300mg/kg)(15.42kg) =   4,626 mg for L per day.


I really like this brand of curcumin.

There is 750 mg per capsule.

4626mg/750 mg = 6 capsules per day or 3capsules, bid.


**This study only used curcumin as a source of anticonvulsant but since I am adding others (CBD, MCT, DHA and resveratrol), I am wondering if I can use a little less than this amount...

How I stopped L's seizures with DHA.

Disclaimer:  This blog post is an account of how DHA has helped in stopping seizures for my own son.  It is in no way an instruction for treating seizures in anyone else.  I do not receive any reimbursement for promoting any of the products mentioned below.  



"Seizures involve a complex array of factors, so I don't wish to offer fatty acids as a simple solution.  Indeed, we don't really know much at all about fatty acids and seizures. Yet our growing knowledge of the importance of fatty acids in the brain may lead to some important breakthroughs in helping people with seizure disorders."

 -Michael A. Schmidt, PhD author of Brain-Building Nutrition

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A couple of weeks ago, our little family went on a short summer trip to Bishop and Mammoth. We tagged along Gabriel who was assigned to audit the power dams at one of the lakes near Bishop and although it wasn't officially a family vacation, Lucas and I had a great time during the day while daddy worked. In the evening, all three of us enjoyed local cuisines for dinner once Gabe returned to the hotel after work. Surprisingly, our favorite restaurant was the one inside a local bowling alley that had great reviews! Nothing fancy, but the service and food was great.     

On the second morning, I was late in administering L's keppra.  Usually, he gets a teaspoonful (500 mg) as soon as he wakes up around 7:00 am but on that particular day, he didn't wake up until 9:00 am.  Five minutes after receiving his keppra, he had the most severe seizure he has ever had.  It was a full tonic clonic with jerking of his whole body and foaming in the mouth.  It lasted for about a minute but felt like an eternity and I was a total wreck.  When we got home a few days later, I ordered an emergency dose of diastat, just in case.  

This is one of his typical seizures. 

I was upset that the keppra was not working and we have had to increase his dose 3 times and yet the seizures were an almost daily occurrence. I almost felt guilty that I was administering something that wasn't fixing the problem but may be contributing to some bad side effects! The seizures would stop for a few days after the increase in dosage then return.  The Charlotte's Web we have been supplementing along with keppra for the past 5 months didn't seem to be making any difference at all.  I am not sure what prompted me, perhaps out of desperation, but I decided to restart the DHA I had been giving L a couple of years back.  I had stopped giving it to him because I didn't think it was having any effect. In hindsight, I realize L never had seizures when he was on DHA the first time at about the age of 18 months.  About a year after I stopped giving him the high dose of DHA, as recommended by Dr. Ron Myers, is when he started with the complex partials.  I doubled the dose this time from 800 mg to 1600 mg a day as he has roughly doubled in weight. The brand I use is Neuromins from Source Naturals which is pure DHA from algae with no EPA or other essential fatty acids. click for link to neuromins    This is what Dr. Myers recommended when I consulted him a few years back.  My calculation of the dosage came out be:
  
We found out L weighs 34 lbs on our last neuro appointment.
 His current weight: (1kg/2.2046lbs) (34 lbs) = 15.42 kg
 1600 mg/15.42kg = 104.76 mg/kg of body weight. 
I give him two doses, once in the morning and once at night.
 104.76 mg/kg divided by twice a day is 51.88 mg/kg per serving. 

We have been seizure free since two days after starting DHA!  That's 11 days straight with no seizures for the first time in 5 months!!!

This log goes back to March 2 with similar entries of almost daily seizure activity.

I continued with the keppra for a few more days but then decided to titrate it down to see what happens.  We are currently at 300 mg in the morning and 400 mg at night.  That is a 30% and 20% reduction, respectively, and still no sign of seizures, yet!!!  I am hoping to slowly titrate down some more but not completely. 

Source Naturals sells various concentrations of neuromins. I purchased the highest concentration which is 200 mg per capsule.  This equates to 4 capsules in the morning and 4 capsules at night.  There are 120 capsules per bottle which means a bottle will last me 15 days.  Amazon sells it for $44.49 per bottle which equates to 0.35 cents per capsule.  At 8 capsules a day, that's $2.80 per day or about $84.00 per month.  The downside is that it can get very expensive and none of this is covered by insurance, of course.  Although, I did mention all this to our neurologist who said Kaiser may supply their own brand of fish oil but will not cover the neuromins. I am hesitant to try other formulations with EFAs that may not be beneficial.  Why mess with a good thing we have right now?  

My method of administering the oil is to break the capsules onto a chinese soup spoon (really useful for squeezing as much oil out of the capsule, I squeeze against the handle) and draw it up in a syringe.  It comes out to be approximately 2.5 ml.  And for good measure, I add 2 ml of coconut oil for the MCT onto another syringe, L hates the taste of coconut oil the most and he won't take too much at once.  I have had to change over to vanilla flavored pure MCT oil I found at Whole Foods which he likes much better.  Then, I chase it all down with Charlotte's Web oil which L likes for its mint chocolate flavor.  And, before he goes to sleep, we give him 400 mg of keppra along with his atropine eye drops.  We are looking for a good source of resverotrol to add to the regimen to "help protect against rancid fats (peroxidized lipids) in the body" (Michael Schmidt, PhD) whenever fatty acid supplements are used.  Who knows what havoc build up of free radicals can cause!  Beta oxidation of  polyunsaturated fatty acids naturally yields free radical ions and although endogenous enzymes like superoxide dismutase act as free radical scavengers, it may not be enough to neutralize all free radicals when supplementing massive amounts of fats and lipids.  



I can't say DHA is the sole factor that has stopped his seizures which is why I won't stop keppra completely.  Perhaps, it is the cumulative effects from the CBD oil, DHA,  MCT oil and keppra. I've always had a suspicion that beneficial oils will help his condition; afterall, the brain is comprised of over 90% fat.  

 The neurologist actually did not seem surprised at the benefits of DHA.  So why the heck didn't he tell me about it before?!  Allopathic doctors only want to push drugs even if they know natural products may work, too.  Is that due to liability issues or because it's not in their scope of practice?  When I shared L's seizure log starting from March up to present he didn't seem surprised nor debunk the results.  At least, he is on board with my new care plan.  The trajectory we would have followed had I strictly followed the neurologist's recommendations would have been to max out on one seizure medication after another until nothing works and the seizures become "intractable".  Then, perhaps a VNS implantation options would be offered along with very restrictive diets. And, if all that fails, brain surgery would be suggested, all the while experiencing some very bad side effects from the medications and regressions from the seizures.  If all those interventions haven't worn out the body or perhaps because of it, there is the very real and scary possibility of dying from SUDEP.  It seems many children with Dup15q have already gone this route and few have even died from SUDEP.  This is all a dismal prospect, to say the least. 

 I don't have any scientific proof or rationale for how it does what it does but after googling  seizures and DHA online, I found page after page of scholarly articles and empirical data that show increase in seizure threshold both in experimental models and in human clinical trials.  Many allude to the connection of EFA to modulation of voltage gated ion channels (so I wasn't crazy afterall when I blabbered on about calcium channels!).  

Here are some papers I found on DHA and resverotrol: 

http://www.medicaldaily.com/fish-oil-low-cost-intervention-epileptics-whose-meds-wont-work-anymore-301952

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4525390/
http://www.dhaomega3.org/Nervous-System/Epilepsy-and-Omega-3-Fatty-Acids
http://www.ncbi.nlm.nih.gov/pubmed/24662925

http://newsroom.ucla.edu/releases/low-doses-of-fish-oil-may-reduce-seizures-in-patients-with-drug-resistant-epilepsy
http://www.ncbi.nlm.nih.gov/pubmed/21554899
http://pubs.sciepub.com/ijcen/2/2/1/
http://www.ncbi.nlm.nih.gov/pubmed/24896336


Here are articles about seizure reduction using MCT oil:

http://www.hindawi.com/journals/crinm/2013/809151/
http://adc.bmj.com/content/61/12/1168.full.pdf


A quote from one article mentions EFA to ion channel excitability.

"This idea is based on the ability of omega-3 fatty acids to cross the secure blood brain barrier, where it then becomes incorporated in the cells’ layers of fat. Once inside, it’s believed that the fatty acids alter calcium and sodium channels, preventing neuronal excitability, and thus seizures. Whether or not this works has been inconsistent, according to past studies."

Currently, I am reading a book cited in one of the articles above. Brain-Building-Nutrition-Physical-Emotional-Intelligence by Michael A. Schmidt, PhD. Here is an excerpt from his book regarding seizures:

There is also evidence that specific saturated fatty acids significantly improve some seizures....In some patients being treated with anticonvulsive drugs, epileptic seizures were reduced by supplementing the diet with 5 g of a spread containing 65% omega-3 fatty acids at every breakfast for six months.

He then cites another book, Fatty Acids: Physiological and Behavioral Function by Dr. David Mostofsy (next on my reading list):

In a chapter devoted to seizures, the authors review multiple biochemical means by which fatty acids might effect seizures....Of particular interest is the second quote, wherein the authors state."At low-micromolar concentrations, they (omega-3 fatty acids, DHA) exhibit the same effects as well known antiepileptic drugs like carbamazepine, phenytoin, and valproic acid....This quote is in specific reference to sodium currents  and voltage gradients...

There is currently a clinical trial study taking place in Canada called Clinical Trial of the Effects of DHA in the Treatment of Seizure Disorders. (click for link)

If time and money were not an issue, I would like to conduct a study and call it "Dose dependent effect of DHA, CBD, MCT and resverotrol on cognition, behavior and seizures in Dup15q population".

I am super excited that L has been seizure free for almost two weeks now.  But, I worry it may just be temporary.  I pray it lasts.  

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Update:  August 11, 2016.  Seizure free for 16 days.  We have reduced keppra down to 300 mg both day and night.  My goal is to be at 250 mg twice a day which was our initial dose.  So grateful and fortunate to have been able to do this for my boy.  

                       

Update:  August 17, 2016.  We are down to 250 mg keppra twice a day.  Day 22 with no seizures noted.  He has achieved a couple of new milestones.  First, he ate his first whole apple without it being chopped up into wedges.  

Second, he has a porcupine doll  that sings the song "Stuck on You" by Sugarland as it spins around in circles.  I was on the sofa and sang the song for him and he thought for a few seconds, walked over to the coffee table that had the doll and brought it to me!!! I never knew he could make that connection!  So exciting! 



Update: August 22, 2016, 27 days seizure free!!  Keppra down to 200 mg twice a day (that's a 60% reduction!).  What looked like a prelude to a seizure in the morning of the first day of kindergarten may have been that he was just half asleep.  He never gets up so early.  We are on a modified schedule at school wherein he starts one hour later than the regular school time so that we can be as gentle as possible with him in the mornings.  

Update: August 25, 2016.  30 days seizure free!! Keppra is down to 180 mg twice a day.  At this point, I am wondering if we can just discontinue the keppra as the dose is below therapeutic range. The neurologist wanted us to initially start at 250mg twice a day so I am assuming anything below that must be non-therapeutic.  In a few days will stop keppra completely and inform neuro of plan.

Update:  September 1, 2016.  Stopped keppra two days ago (August 29).  Still seizure free.  Emailed neuro of plan but received no response back. Wrote down my "recipe" (calculations) for my oil concoction here. 

Update: September 4, 2016.  Lucas as the "summer flu" (which he caught from me) with lots of congestion.  His appetite is poor but wants to eat sweets.  Two days ago, he had sweets all day (chocolate cake, cookie, yogurt, sweetened instant oatmeal, donut, orange juice, honey and lemon water for the congestion).  What the heck was I thinking??? That evening he had a seizure! Was never really convinced that diet made such an impact on seizure onset but now I am.  Gave keppra 250 mg, post-ictal.  Hasn't had a seizure since.  Crossing my fingers. 

Summer 2016; Seizures, School Bus, Summer School

We have just completed our triennial IEP meeting with the school district to decide on best placement for L in kindergarten.  We had the official meeting last week but have not signed anything as I need plenty of time to review and modify the IEP agreement in order to get everything just right.  As usual, the same cast of players attended the meeting: his teacher, the principal (who showed up late and looked as if she would rather be elsewhere), PT, OT, ST and the school psychologist.  Surprising to us, his PT informed us that he has meet all the goals set out at the beginning of the school year and would like to discontinue PT in the upcoming year.  She said someone will occasionally monitor him but does not think he needs any more physical therapy.  This, in light of the fact that during the meeting, L fell smack onto his tummy as he was racing back and forth in the classroom right in front of everyone.  I admit, he has come a long ways and has met all the goals as outlined in the previous IEP.  Rather than eliminating PT altogether, I hope to set some new goals, like not falling smack onto his tummy while sprinting for his life; or, being able to jump up and down on a trampoline like other kids of his age. Rather than a motor issue, I feel as though he has no depth perception. I so wish I can see the world through his eyes.

We plan to continue on the OT and ST, the two areas he is very behind in.  The school psychologist also suggested that we transfer him to another school within the same school district which provides more life skills.  He has been attending an "autism program" for the past two years for pre-K because that was the diagnosis he received when he took the ADOS test, when they evaluated him at UCLA for a clinical trial study and at UCI for another autism clinical study.  However, because he is more delayed than kids who have "straight autism" per the school psychologist, he would benefit from a program that focuses more on life skills.  He is more behind than the other kids in his classroom and I knew it would be due to his Dup15q diagnosis. A few weeks ago, Gabe, L and I went to Studio City for Stephanie's Day at CBS Studios.  This event is founded by one of the CBS executives who has a daughter with autism.  Many educational, therapy and medical vendors had booths for families with autism.  We spoke with a representative for Villa Esperanza school, a non public school in Pasadena that serve special needs children.  I hope to get L transferred over there eventually and hope the school district will agree it is the best fit for him.  Of course, I am prepared for a huge fight to get this done.  We will tour the school next week and see what steps we need to take.

I will miss his current teacher and the program which seemed so well organized and the kids seemed to be really well treated by the staff. But, I know L needs to go to a program that will serve his needs the best.  I am glad he had the experience in his present school but I also wonder if he wouldn't have benefited from the new program a little bit sooner.   Granted, it is clear across town and we will most likely be busing him. I know, Gabe and I vowed we would never put him on those buses. But, recently the laws have changed and bus safety has been improved.  (Link)  We plan to take him to school in the morning due to his new onset seizures between 7-10 am but plan for him to be brought back home on the bus. I know L is going to love getting on the bus, he used to cry and fret that he was not getting on one with all the other kids.  I always like to make small rapport with the teachers everyday and pick up just a tidbit of info on how his day went.  I think it also sends a subliminal message to the staff that the parents are really involved with this child and that they had better not mess with him. But really, who knows what happens inside the classroom, there are no camera. 

Recently, the Dup15q Alliance published a paper on seizures.  seizures and Dup15q
We have increased his keppra dose twice with some seizure control but after a few weeks, they seem to come back.  I hate that there is no direct remedy and every med is like a trial and error.  I hated that I was giving him keppra everyday with no seizure control for about a month.  Why the hell am I giving it to him for anyway?? One morning, as I turned for 5 minutes to use the bathroom, I found him in the bedroom slumped over next to the trashcan seizing.  This made me so so sad and mad.  I hate to see my baby like that!