"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.....