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.....