Dietary changes and seizure control

[Jay1]

Bacopa Monnieri

This plant grows in Hawaii and India and possibly other places also.

http://www.nativeplants.hawaii.edu/plant/view/Bacopa_monnieri

Published Medical Research papers


(1) Protection from phenytoin-induced cognitive deficit by Bacopa monniera, a reputed Indian nootropic plant

http://www.ncbi.nlm.nih.gov/pubmed/10940574



(2) Decreased glutamate receptor binding and NMDA R1 gene expression in hippocampus of pilocarpine-induced epileptic rats: neuroprotective role of Bacopa monnieri extract.

http://www.ncbi.nlm.nih.gov/pubmed/18086456



(3) Neuroprotective role of Bacopa monnieri extract in epilepsy and effect of glucose supplementation during hypoxia: glutamate receptor gene expression

http://www.ncbi.nlm.nih.gov/pubmed/17940877


(4) Bacopa monnieri and Bacoside-A treatment reverses epilepsy associated changes to near control suggesting that decreased GABA receptors in the cerebral cortex have an important role in epileptic occurrence; Bacopa monnieri and Bacoside-A have therapeutic application in epilepsy management.

http://www.ncbi.nlm.nih.gov/pubmed/22364254


(5) Results suggest that decreased GABA receptors in the striatum have an important role in epilepsy associated motor learning deficits and Bacopa monnieri and bacoside-A has a beneficial effect in the management of epilepsy.

http://www.ncbi.nlm.nih.gov/pubmed/20451596


(6) Treatment with B. monnieri and bacoside A prevents the occurrence of seizures thereby reducing the impairment of GABAergic activity, motor learning, and memory deficit.

http://www.ncbi.nlm.nih.gov/pubmed/20153260


(7) Effects of a standardized Bacopa monnieri extract on cognitive performance, anxiety, and depression in the elderly: a randomized, double-blind, placebo-controlled trial.

http://www.ncbi.nlm.nih.gov/pubmed/18611150

 

[masterjen]

These studies all refer to mice and rats! Sorry but for me I need to see evidence from studies done on humans before I will take some kind of herb or other supplement. It's a bit leap to apply studies on rodents to what can be expected to be seen in humans. I can appreciate that MAYBE the effects will be similar in humans. Try finding published studies involving humans and that may capture my attention

 

[Bidwell]

Ohhhh what a world we live in!

 

[AlohaBird]

To be fair, at least this time Jay's links actually do indicate what he says they do. Well done, Jay.

Yes, these are all on rodents *so far*. All fairly recent papers.

But then there are the thousands of years of Ayurvedic practice on humans. That is not rigorously documented but that doesn't make it worthless.

 

[Jay1]

Hing (Asafoetida)

It has a very strong sulphur smell before it is cooked and should be kept in a small glass jar with a tight fitting lid.



https://en.wikipedia.org/wiki/Asafoetida

Published Medical Research papers



(1) Influence of Asafoetida on Prevention and Treatment of Memory Impairment Induced by d-Galactose and NaNO2 in Mice - Findings indicate that asafoetida could prevent and treat amnesia.

http://www.ncbi.nlm.nih.gov/pubmed/25788433



(2) Ferula Assa Foetida gum extract, in specific doses, is able to show an anti-epileptic effect because of its antioxidant properties, probably acting through an enzyme activity mechanism.

http://www.ncbi.nlm.nih.gov/pubmed/25337361



(3) Asafoetida could prevent seizure in both chemical and electrical kindling model and this effect may partially be related to the terpenoids compounds.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4158650/



(4) Ferula asafoetida: Traditional uses and pharmacological activity

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459456/

 

[KarenB]

The mice and rat studies are preliminary. The next step would be safety studies on human beings, and then efficacy.

I lived in Asia for over a decade, and did use some of the traditional meds for some things, and found that some of the traditional approaches were more effective than western meds. However, for treating Jon's epilepsy, I held back, because I wanted to know exactly what they were giving him, and whether or not it was safe. Plants may be "natural" -- but just like medications, they can have side effects. And some of the traditional meds contain stuff like snake bile that can be toxic. Plus some of the philosophy behind some of the treatments is nonsensical -- for instance, because the snake is flexible, eating medicine with snake in it can cure stiffness.

 

[Bernard]

I received a call from the hospital. They wanted to schedule a 24 hour Video EEG for my son to see if his brain shows any kind of seizure activity.

...

I have already exhausted my deductible and there is no cost to me.

That's a no brainer. 24hr vEEG is a really useful diagnostic tool. Sounds like you have nothing to lose and much to possibly gain from doing it.

 

[Jay1]

The mice and rat studies are preliminary. The next step would be safety studies on human beings, and then efficacy.

I lived in Asia for over a decade, and did use some of the traditional meds for some things, and found that some of the traditional approaches were more effective than western meds. However, for treating Jon's epilepsy, I held back, because I wanted to know exactly what they were giving him, and whether or not it was safe. Plants may be "natural" -- but just like medications, they can have side effects.

As for plants, lot of people are already taking them and their opinions are available on Amazon.


Effects of a standardized Bacopa monnieri extract on cognitive performance, anxiety, and depression in the elderly: a randomized, double-blind, placebo-controlled trial.
http://www.ncbi.nlm.nih.gov/pubmed/18611150


Links for reviews on Amazon - I am wary of the contents of supplements and have not used this product. The link has been provided only for reading reviews.
[ame="http://www.amazon.com/NutriGold-Bacopa-GOLD-Vegetarian-Supplement/dp/B004S5SN66/ref=sr_1_1?ie=UTF8&qid=1437067705&sr=8-1&keywords=bacopa"]Amazon.com: NutriGold Bacopa GOLD - 500 mg, 90 Vegetarian Capsules (Pure Bacopa Monnieri Extract Memory Supplement): Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51WzKqOgWaL.@@AMEPARAM@@51WzKqOgWaL[/ame]



I have ordered the real plants and will test on myself for one week by eating the leaves and then give them to my son. I will update everyone on how it affects me or my son.

Bacopa is a native plant of Hawaii and AlohaBird can probably get more information from traditional Hawaiian healer and then share with all of us.

And some of the traditional meds contain stuff like snake bile that can be toxic. Plus some of the philosophy behind some of the treatments is nonsensical -- for instance, because the snake is flexible, eating medicine with snake in it can cure stiffness.

I found your comments about snakes quite interesting. Which country do they use snakes? I am a vegetarian and do not even want to think of any slimy creature around me. Personally, I find it repulsive and will not ingest anything snake related in any situation.


Published medical papers on snakes.


(1) Anticancer Activity of Cobra Venom Polypeptide, Cytotoxin-II, against Human Breast Cancer Adenocarcinoma Cell Line (MCF-7) via the Induction of Apoptosis

Results show that cobra venom-derived cytotoxin-II has potent anticancer effects in a breast carcinoma cell line. Cytotoxin-II induced these effects via the induction of apoptosis through lysosomal damage, release of lysosomal hydrolases such as cysteine cathepsins, production of intracellular ROS, mitochondrial damage, and activation of caspases. Future studies are warranted to further explore the potential of this toxin as a breast cancer treatment.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278049/



(2) Anti-cancer effect of snake venom toxin through down regulation of AP-1 mediated PRDX6 expression

Data indicates that Snake venom toxin (SVT) inhibits tumor growth via inhibition of PRDX6 activity through interaction with its transcription factor AP-1.


http://www.ncbi.nlm.nih.gov/pubmed/26061816


(3) MmTX1 and MmTX2 from coral snake venom potently modulate GABAA receptor activity

http://www.ncbi.nlm.nih.gov/pubmed/25675485


(4) Anti-tumor effect investigation of obtustatin and crude Macrovipera lebetina obtusa venom in S-180 sarcoma bearing mice.

http://www.ncbi.nlm.nih.gov/pubmed/26169565


(5) Inhibition of pancreatic tumoral cells by snake venom disintegrins.

http://www.ncbi.nlm.nih.gov/pubmed/25450798


(6) Inhibitory effect of snake venom toxin on NF-κB activity prevents human cervical cancer cell growth via increase of death receptor 3 and 5 expression.

http://www.ncbi.nlm.nih.gov/pubmed/25417048

 

[AlohaBird]

I think Karen's comment about snakes links to a general caution that I live by when researching traditional medicines. Just because something is "traditional" and/or "Eastern" does not automatically make it wise or good or even helpful.

Traditional Asian medicine has included such things as ground rhino horn as a cure for erectile dysfunction and tiger testicle extract in order to make you brave and strong. Reasons why two wonderful creatures are on the brink of extinction.

If however, an actual plant can be shown to have an actual component that has an effect on actual physiology, then terrific. An example is the bark of the willow tree. When refined it is called aspirin and it actually works on pain.

I have seen the bacopa plant in a lot of places around here. It is widely used as a ground cover in landscaping. I will ask my Hawaiian healer about it when I see him next. He formulates teas for individual clients.

 

[lnsiu]

That's a no brainer. 24hr vEEG is a really useful diagnostic tool. Sounds like you have nothing to lose and much to possibly gain from doing it.

That would depend on the quality of the EEG and the interpretation of the EEG.
What should one do with "abnormality" and the like?

Doesn't that mean they cant read the data?

just curious...

 

[KarenB]

As for plants, lot of people are already taking them and their opinions are available on Amazon.

I have ordered the real plants and will test on myself for one week by eating the leaves and then give them to my son. I will update everyone on how it affects me or my son.

I found your comments about snakes quite interesting. Which country do they use snakes? I am a vegetarian and do not even want to think of any slimy creature around me. Personally, I find it repulsive and will not ingest anything snake related in any situation.

I wouldn't take a herbal treatment, based only on other users' opinions, Well, maybe I would, if a safety study had been done. Or it was something that was commonly eaten anyway, like cinnamon or tumeric, and known to be safe. But, as far as efficacy (or even safety), if all we have is the opinions of others, which might be subjective, then we don't have much.

I have heard of parents "testing" various treatments on themselves (in fact, my husband and I often do so) -- however, important to remember that what might be safe for an adult, may not be for a child. Here's a link to potential side effects: http://www.webmd.com/vitamins-suppl...eingredientid=761&activeingredientname=brahmi

Also, i was wondering, since your son isn't currently having seizures, what are you hoping the Bacopa will achieve? I did find this study of healthy adults that demonstrated improvement in memory -- specifically retention of new material. http://www.nature.com/npp/journal/v27/n2/full/1395862a.html

China is the country that's big on snake medicine. It's common to see the traditional medicine practitioners on the sidewalk, with their wares spread out. Bottles of wine with lizards floating in them. Or seahorse wine (I tried that -- it tasted pretty good -- had some cinnamon and other spices in it -- but have no idea what it was good for). Big jars full of some sort of liquid with snakes floating in them. Apparently, just having some creature floating in the wine makes it helpful. Or so they say.

What really bugs me is the Tibetan practitioners, because they have tiger paws and parts of other highly endangered animals spread out on the the sidewalk. Not sure how they reconcile that with Buddhism.

 

[Andrew]

I find alternative, natural treatments interesting. Here are some URLs you may find interesting:

http://cdn.intechopen.com/pdfs-wm/35742.pdf

http://www.biomedcentral.com/1471-2105/10/273

http://discovery.ucl.ac.uk/1413008/

And here is a little about me:

Here is my story posted 02-20-2011: http://www.coping-with-epilepsy.com/forums/f23/40-years-vitamin-b6-11674/

I have also had a late diagnosis of both Dyslexia and Asperger's Syndrome. A genetic test has confirmed that I have a condition known as 'PNPO Deficiency'. I am the only person in my family/known family history with 'PNPO Deficiency'. It has now been over 44 years since my paediatrician first prescribed vitamin B6. Apart from an Absent 'type' seizure I remain seizure free. I need to continue taking B vitamins on a daily bases for the rest of my life to prevent my many different types of seizures, including Status Epilepticus. My seizures are refractory to Anti-epileptic drugs.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

PNPO Deficiency is extremely rare. Vitamin B6 may cause Peripheral Neuropathy (nerve damage). B vitamins may also interfere with medication(s) you are taking.

 

[Jay1]

I wouldn't take a herbal treatment, based only on other users' opinions, Well, maybe I would, if a safety study had been done. Or it was something that was commonly eaten anyway, like cinnamon or tumeric, and known to be safe. But, as far as efficacy (or even safety), if all we have is the opinions of others, which might be subjective, then we don't have much.

Did you see the link for double blind randomized study done on elderly folks?

I have heard of parents "testing" various treatments on themselves (in fact, my husband and I often do so) -- however, important to remember that what might be safe for an adult, may not be for a child. Here's a link to potential side effects: http://www.webmd.com/vitamins-suppl...eingredientid=761&activeingredientname=brahmi

Thanks for the link. I am going to consult a Ayurvedic doctor. They also go to school for 5-6 years before becoming doctor.

Also, i was wondering, since your son isn't currently having seizures, what are you hoping the Bacopa will achieve? I did find this study of healthy adults that demonstrated improvement in memory -- specifically retention of new material. http://www.nature.com/npp/journal/v27/n2/full/1395862a.html

Even though my son is currently not having seizures but his previous two prolonged status epilepticus has scared the hell out of me. I can not let my guard down. As of now, it is probably the ketones from coconut oil that is keeping the seizures away. What happens if he does not get coconut oil for 1-2 days? I can not take him on a flight because airport security will never allow someone to take a big jar of coconut oil. What happens if I can not readily find coconut oil in another city or another country?

I want to raise his seizure threshold using multiple ways.

China is the country that's big on snake medicine. It's common to see the traditional medicine practitioners on the sidewalk, with their wares spread out. Bottles of wine with lizards floating in them. Or seahorse wine (I tried that -- it tasted pretty good -- had some cinnamon and other spices in it -- but have no idea what it was good for). Big jars full of some sort of liquid with snakes floating in them. Apparently, just having some creature floating in the wine makes it helpful. Or so they say.

What really bugs me is the Tibetan practitioners, because they have tiger paws and parts of other highly endangered animals spread out on the the sidewalk. Not sure how they reconcile that with Buddhism.

Excellent information. Thanks a lot.

 

[Blonde Angel]

Jay
regarding the prospect of doing a video EEG for your Son, how is he going to be exactly compliant?
Autism is varied between individuals and the common denominator is the fact there is a level of anxiety that exists in the first place. Verbal or not verbal, differences in routine, enviroment and people will increase anxiety.

EEG was hell for my girl, we tried two different times, even with some oral sedation she would not let the tech apply anything to her head, she was very anxious and it was a lost cause really.
When we got home she relaxed and went to sleep, I decided not to let her go through that trauma again.
Blood test is a battle and she now has a General Anaesthetic for the MRI scan and with dental procedures, that's the time to get the bloodwork done.. oh and forget the finger jab she will go ballistic.

 

[Blonde Angel]

It's an interesting thread and the main thing I set my goal as a parent is to find what is going to benefit my daughters quality of life. I have been fortunate to see a Medical Practitioner that also specializes in nutritional medicine. He also lectures in Oz and researches. He considers there is "brain food" and "brain poisons" and describes how Autism is a case point.

There is still a lot to learn about Autism and Epilepsy. There is genetics, toxins, nutritional, and enviromental factors that some do not realize it just be all connected to the puzzle.

There is no quick fix, I do find another issue pops up and its about constant problem solving.. just doing the best you can really.

No one should do the blame game, but it happens, its easy to think "if I did this or did not do this"... get over it and move on to understand and learn not just your child but for all quality of life and be happy as possible.

There is still some very ignorant people when it involves epilepsy and autism and we have all met them somewhere.. and some do work in the area as health professionals and yes even in education.
I have had to learn to be assertive and will not take crap, when my girl broke her arm in 2 places whilst riding a trike at the special school, I had to deal with ignorant Drs who thought they "knew best" by getting off her plaster too early and the the screw dislodged and she needed a repeat surgery. I threw that damn xray at them and I said "you never listened when I explained that I not have a "normal" kid that will listen and understand." I decided to make a formal complaint and I saw another ortho specialist who repaired her arm and there was no further issues. She has a scar that is bigger than it should because of the screw dislodgement.

I have learned that if you are not happy with any consultation you have the right to question and see someone else. If they do not like being asked qns I will move on to better people.
Simple as that, I am not there to be a friend I want possible answers for my child.

 

[Blonde Angel]

Jay
What you experienced with you Son in Status E is something no parents would want to go through and you are just trying to do the best for your Son. Any parent dreads when a child needs to go to hospital because its simply out of your control and promotes awful feelings of stuff being done and you are terrified.
I hated spending time in hospital because there exists some good and some ignorant, they need to listen to the parent and respect that. One is dependant on a Dr doing their best job for their child.. which does not always happen.

Please do not forget others in your family and do not get obsessed in finding the answers for your son. You all deserve quality of life and just find the time to enjoy simple things and work on social skills and whats appropiate.
Its about overcoming your own grief and struggles.
Just love those who are important to you and you will be rewarded..
I get a very nice smile from my girl and when she leans towards me when I ask "kiss?" It makes me so proud.
Just the little things to someone else .. but it means a lot to me..

 

[KarenB]

Even though my son is currently not having seizures but his previous two prolonged status epilepticus has scared the hell out of me. I can not let my guard down. As of now, it is probably the ketones from coconut oil that is keeping the seizures away. What happens if he does not get coconut oil for 1-2 days? I can not take him on a flight because airport security will never allow someone to take a big jar of coconut oil. What happens if I can not readily find coconut oil in another city or another country?

I want to raise his seizure threshold using multiple ways.
.

I totally get your desire to raise his seizure threshold. We've been working on that with Jon now for about 2 1/2 years. Of course, the longer he's seizure free, the higher the threshold, but we don't want to take any chances.

Now, as to travel and coconut oil, etc. We have traveled around the world twice with Jonathan on the Keto diet. We get a letter from his doctor or dietitian of medical necessity, and they let us through security with all his foods, drinks, MCT oil, etc. For the actual overseas plane trip, I make meals with the MCT oil cooked in -- like his flaxseed/almond flour muffin or something like that. That's just in case we run into trouble with getting liquids through security (which hasn't happened yet). In fact, we're leaving on a trip tomorrow, so today, I will bake a lot of muffins for traveling -- an all-in-one meal thats easily portable.

I very carefully pack a lot of stuff in checked luggage for when we reach our destination (usually have a soft refrigerated bag) -- things like olives, avocados, flaxseed meal, almond flour, cheese, etc., and then for carry-on we take enough for the actual trip, with a little extra in case a typhoon or something interrupts the trip partway through. Having about a week supply of food gives me time to figure out where to get his stuff in a new country. And, of course we adjust his meals a bit, depending on what's available. I may not find all the stuff I use here, but I can always find enough to make it work.

 

[KarenB]

Jay
regarding the prospect of doing a video EEG for your Son, how is he going to be exactly compliant?
Autism is varied between individuals and the common denominator is the fact there is a level of anxiety that exists in the first place. Verbal or not verbal, differences in routine, enviroment and people will increase anxiety.

EEG was hell for my girl, we tried two different times, even with some oral sedation she would not let the tech apply anything to her head, she was very anxious and it was a lost cause really.
When we got home she relaxed and went to sleep, I decided not to let her go through that trauma again.
Blood test is a battle and she now has a General Anaesthetic for the MRI scan and with dental procedures, that's the time to get the bloodwork done.. oh and forget the finger jab she will go ballistic.

When Jon has an EEG, we get him engrossed in one of his favorite movies (take a portable player with us) while the electrodes are going on. He hates having stuff on his head, but we've always been able to get them on without too much trauma. Now, keeping them on is another matter.

Jon also has general anesthesia for MRIs. I hate anesthesia, because it's a seizure trigger for him. So far, we've gotten through the dental cleanings without sedation, but it's Hell.

He does pretty good with bloodwork, if, once again, we keep him preoccupied with something. My husband actually does his draws at home and then takes them on in to the hospital. This works great for fasting blood draws and also for being more relaxed, but of course not everyone has a husband who works in pathology.

 

[KarenB]

Another reason for the perceived rise in autism is that a child today can be "somewhere on the autism spectrum" (eg. Asperger's or other mild autism syndromes such as pervasive developmental disorder not otherwise specified (PDD-NOS)) whereas when my mother was a special education teacher 30-40 years ago a child was considered autistic only if they displayed the extreme behaviours (inability to use spoke language, self-injury behaviours such as head banging, strong aversion to human contact, hand flapping, and spinning of self and objects, etc.). Back then there was no such thing as an "autism spectrum", at least not in a way that was ever communicated to the teachers and professionals that worked with and diagnosed these children.

The rise in autism is not perceived -- it is a very real epidemic that is devastating children and their families.

This link is to the CDC report on how they came up with the 2010 figures of 1 out of every 68 children (aged eight) with autism (and 1 in every 42 boys of eight years old).
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=ss6302a1_w

The CDC researchers did not merely depend on reports from parents and doctors. Rather, they conducted an extensive screening of school records, where they identified children receiving special education services. They also did an extensive search of health provider records, where screened for certain behavioral or diagnostic descriptions (according to codes submitted for insurance purposes).

Next, the files of children receiving special ed and children whose health records hinted at the possibility of ASD were reviewed by clinicians experienced in diagnosing Autism. If the data from school records and/or the health records described behaviors consistent with the DSM-IV-TR diagnostic criteria, then those children were listed as having ASD (whether or not they'd ever been formally diagnosed)(80% of the children that CDC believed met the criteria for ASD had a formal diagnosis).

This method of determining prevalence of ASD among children in the U.S. has been used by the CDC since 2000. Therefore, we cannot attribute the exponential increase in Autism in the past 15 years to "greater awareness." It does not explain the 29% increase from only 2008 to 2010 (from 1 in 88 to 1 in 68 children). Or the 123% increase from 2002 when the prevalence was 1 in 150 children.

Something is destroying our children, and we can't hide our heads in the sand any longer.

 

[masterjen]

I'm not saying the only reason for the rise in autism is the change in diagnostic criteria I said it is another reason. Plus as I said in my post I am comparing today to 30-40 years ago, not 2002 to today or 2008 to today.

There may very well be environmental factors at play causing this short time-frame rise in autism diagnoses, or is it some sort of genetic mutation that some children are predisposed to? Only time will tell which it is, and hopefully we find out sooner rather than later.