"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.
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!!!
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| 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-epilepsyhttp://www.dhaomega3.org/Nervous-System/Epilepsy-and-Omega-3-Fatty-Acids
http://www.ncbi.nlm.nih.gov/pubmed/24662925
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)
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.
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.
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