Please Help My 3 Year Old Son Who His Suffering From Epilepsy

agnostic

Member
Joined
Dec 15, 2012
Messages
81
Dear forum members

I would be highly grateful if some of the experts on this forum could give their opinion on the case of my poor 3 year old son who is currently suffering from frequent nocturnal grand mal seizures. I’m currently at my wit’s end and I don’t know how to deal with the following situation. I apologize in advance for my long and detailed posting.

My son had a relatively normal development until the age of 14 months, when he suffered from this first tonic-clonic seizure. There were no birth complications and he was breastfed until 9 months of age. After that we sometimes gave him the WAPF milk formula (which is made from raw milk) but more frequently an organic powder formula with no nasty ingredients. When he was old enough to drink cow’s milk directly, we gave him good quality raw organic cows milk about 3 times per day. We gave our best to feed him well following principles of the WAPF and Ray Peat. He was not a good sleeper from the beginning and tended to be rather uneasy and agitated, but apart from that he was a very joyful and curious little boy who was always very outgoing and playful. He had good motor development and could walk at the age of 12.5 month.

A few days before he had his first seizure he was sick for a few days (probably the flu, since he had fever). He didn’t eat much during the period of sickness and basically drank milk. Interestingly, he never lost the appetite for milk even when he was sick. About 2 days after he finally ate solid food again, he suddenly and totally unexpectedly had grand mal seizure while he was playing in his room. My wife and I were eating breakfast in the kitchen when we suddenly heard strange noises coming from his room. We immediately rushed into his room and found him lying on the floor. He had a classical grand mal seizure that lasted about 2-3 minutes, but at the time we didn’t know what it is and feared that he is going to die. We first thought that he might have swallowed something. It was totally terrifying. Of course, we immediately called the ambulance. The people from the ambulance thought that it might be a febrile seizure, because it is quite common at this age. However, when they measured the temperature, it was quite a bit below normal (35.5° Celcius). They later brought us to the children’s hospital and we stayed there for two days. During the first day my son suffered another two grand mal seizures. A full medical examination, including EEG, brain structural MRI, and blood work was conducted, but they couldn’t find anything. Therefore, they didn’t want to draw the diagnosis of epilepsy yet. Given that my child was sick the past few days and still had a cough, they interpreted it as kind of a febrile seizure. I should also say that these events occurred at the end of December, when the darkness stress of winter was at its peak.

Unfortunately, a month later my son had another isolated seizure and two months later (in mid of February) he had a period lasting about 5 days where he had a seizure practically every day. Almost all of these seizures occurred at night while he was asleep (typically in the early morning hours) or shortly after getting up. The doctors had told us to go to the emergency room if two grand mal seizures occur within 24 hours, which was the case by the end of the above described period. After we went there, they told us that the diagnostic criteria of an epilepsy are now fulfilled and they prescribed an antiepileptic (Sodium valproate). After my wife and I came home and had read the list of side effects that this medication can have, we were strongly determined to first try all possible natural alternatives.

I immediately did a thorough internet research on the topic and of course I also read everything that Ray Peat has ever mentioned about epilepsy. I came to the conclusion that it would be worth to try Magnesium, B6, Vitamin E and natural desiccated thyroid extract. I knew that the seizures had to be controlled immediately not only because they are highly stressful l and potentially harmful for the brain, but also because relatives and friends would put huge pressure on us to medicate him as long as seizures are still ongoing.

Consequently, I didn’t have the time to introduce these supplements sequentially. Luckily, I had all these supplements already at home. I decided to try magnesium in the form of magnesium chloride as it is easily soluble in milk and is highly absorbable. I also put Vitamin E (Unique E), a very small dose of Vitamin B6 (Pyridoxal-5-Phophate) and a quarter grain of thyroid (PimPom Products) into his bottle of milk that he drank before going to bed. Additionally, I gave him an Epsom salt bath before going to bed. The first night I could hardly sleep since I expected a seizure to occur at every minute. Luckily, the seizures stopped already in the first night! The next seizure he had was about a month later (probably caused by lack of sleep) and then it stopped completely for over 8 months! I was so thrilled. After introducing these supplements, we also observed in the next few days and weeks that his sleep improved and that he became quieter and less irritable.

However, after about 1-2 month being on these supplements he started to have myoclonic jerks, particularly when he was getting tired. Our neurologist was not very concerned about these jerks. He said that they can occur as part of an epilepsy and they do not have to be treated. Although he was sceptic about our nutritional approach (or I should say uninterested), he was ok with it as long our son was seizure free.

After a while we stopped the supplements one after another starting with those that I considered the least important. Based on the literature and reports on forums, I was convinced that magnesium was the most important factor. So, I dropped everything after a while and only kept magnesium. Unfortunately, he still suffered from myoclonic jerks and it became more and more obvious that he is delayed in his speech development. I therefore started to look further for potential remedies. Accidently, I stumbled across a book about B12 deficiency (Could it be B12? – Sarah Pacholok). I was highly intrigued by this book since it also has a chapter about B12 deficiency in small children. Among other things I found out the B12 deficiency has been described in the medical literature to cause all kinds of movement disorders and also epileptic seizures. I later found out that the author has another book that specifically addresses the consequences of B12 deficiency in small children. After reading that I was even more intrigued. I developed the theory that my wife, who has celiac disease and other intestinal problems, had a problem with absorbing B12 and therefore could not provide enough B12 to my son while exclusively breastfeeding him. I decided to make a therapeutic trial and started to give 500 mcg liquid methylcobalamin to my son. At first my son appeared to respond very well to this supplement. The jerks almost completely stopped after a few weeks. However, they reappeared during the next few months while still taking the methylcobalamin.

In November, about 8 months after his last seizure, while still being on magnesium (albeit a smaller dosage) and methylcobalamin , he started to have seizures again. During November and December he had 3 seizures in total. Luckily, we finally managed to control it by increasing the dose of magnesium and adding B6, Vitamin E and Vitamin D/K2 (Thorne Research product). I started the vitamin D, since I realized that he is more seizure prone in winter time and since there were two reviews published about Vitamin D and epilepsy in the mean time. After that he was again completely seizure free for 9 months! Again, we dropped the supplements one after another. The last supplement we dropped was magnesium around end of June this year. I was quite nervous about that because I always thought that magnesium was the most important factor in our concoction. To my amazement nothing bad happed. Not only did he not a have a relapse, the myoclonic jerks started to diminish and finally vanished completely! I was totally shocked. I would never have imagined that a relatively small dose of magnesium (around 100 mg elemental magnesium spread across the day) could cause that. I’m still puzzled at this day how this could have occurred. If anyone knows the answer, please tell me. I guess we had either used a bad form of magnesium or we had dosed too high.

Anyway, by mid of September, after he had been seizure free for 9 months and we already had thought that he has outgrown it, he suddenly had a seizure again in the early morning. In the weeks before we had already noticed that something is starting to change. Whereas before he would constantly wake up at 7 am, he started to wake up earlier and earlier every day until he woke up as early as 5.30, which led to more and more sleep deprivation on my side.

We first considered the seizure an isolated event and did not want to start our supplement regime again. Besides, after having realized that we had caused the myoclonic jerks ourselves, my wife became more and more suspicious about supplements in general and did not want to make further experiments. Nevertheless, I felt that I have to do something and started to give him small doses Vitamin E (Health Natura Brand) several times per week. I chose Vitamin E not only because it should protect against seizures but also because I felt that it would boost the immune system of my son. This speculation was based on the observation that my son was almost never sick earlier in the year while being on Vitamin E, but had almost constantly a cold between about April and July.

However, about two weeks later he had a seizure in the late afternoon, which is a highly unusual time for him. About another three weeks later he had two seizures early in the morning within only two hours, which again is highly unusual. My wife still did not want to give him supplements and thought that our earlier success was a coincidence. Unsurprisingly, his seizure grew further out of control in the following weeks such that he had 8 seizures this fall until this day. About 10 days ago, my wife agreed to give him supplements again. We agreed that if the seizures are not controlled within one month we would start antiepileptic medication.

Besides giving him a small dose of Vitamin E daily (one bump of the Health Natura Brand), I also started with magnesium again. However, due to fears of causing myoclonic jerks, I started slow and chose another form of magnesium, namely, magnesium glycinate (Metabolic Maintenance brand). Additionally I put him on a small dose of Pyridoxal -5-Phosphate (about 1mg) and Vitamin D (1000 I.U.) /K4 (400 mcg) (Thorne) . The first few days I gave 65 mg elemental magnesium once per day. Then I switched to Magnesium Bicarbonate with about the same dose. I thought it might be more effective and is easier to give as it has a better taste. However, after he still had a seizure, I switched back to magnesium glycinate and doubled the dose. I reasoned that magnesium glycinate is not only one of the least laxative forms of magnesium, the amino acid glycine to which it is bound might have additional calming and neuroprotective properties.

Unfortunately, this morning, after having received 130 mg magnesium glycinate the third day, he still had a seizure in the morning. I had hoped that would work better and earlier. Now, the time is running out. People around us are pushing us towards giving him medication. My wife also has lost hope that we can treat it naturally and starts to favor medication, particularly since its becoming more and more obvious that our son is developmentally delayed (especially in terms of speech). She thinks we can no longer carry the risk of not treating him properly and I tend to agree. I’m writing this because I still have a small hope that we can turn things around and treat my son naturally and without exposing him to potentially severe side effects of antiepileptics.

My current view is as follows:

Based on my reading of the literature, magnesium has the biggest potential to treat epilepsy naturally and in many cases epilepsy is simply a form of magnesium deficiency. I think it is not a coincidence that my son was seizure free while being treated with magnesium. I guess he had a decent magnesium status when we stopped supplementing it by the end of June and it took several months until his magnesium reserves were depleted enough to have a relapse. Of course, the shorter days and lower temperatures might also have contributed to this. The reason why he still did not sufficiently respond to the re-introduction of magnesium might be because we did not give it long enough and in a high enough dose. I might also be that magnesium glycinate is less effective than magnesiuim chloride that we used earlier. His other symptoms perfectly fit a magnesium deficiency state. For instance, he tends to have slightly trembling hands and his muscles appears rather rigid and stiff. Also, he still has problems to sleep through and frequently wakes up. He also gets a hiccup every time a tickle him. He is also very agitated and hyperactive at times.

The big question is, why would a small child that has a relatively good diet develop magnesium deficiency? My most recent suspicion is that he drinks too much cow’s milk, which has a very high calcium to magnesium ratio and thereby can lead to magnesium depletion. I realized this after reading the following site:

Magnesium, The Nutrient That Could Change Your Life: Chapter 7. Epilepsy

It describes how Doctor Dr. Lewis B. Barnett successfully treated children with epilepsy using magnesium gluconate. He observed that 9 out of 10 children with epilepsy were milk drinkers. He always advised his patients to eliminate milk from the diet and apparently this was an important part of his success.

My suspicion was further fueled by reading the recent discussion in the following thread:

Our Tarot Reader On The Antagonistic Effects Of Magnesium On Calcium

My son was always a heavy milk drinker. Up until recently he drank about 2.5 dl two to three times a day. We mostly use organic raw milk that is only heated up to body temperature in a pan.

Another possible explanation for his low magnesium level is that he has a low thyroid function and therefore has problems to retain magnesium. I originally suspected this after observing that he tended to have quite a low body temperature immediately after a seizure. We had requested a thyroid test when he got the diagnosis of epilepsy. He had a TSH of 2 [mlU/l], free T3 of 6.8 [pmol/l] and free T4 of 16 [pmol/l]. All values were well within the reference ranges, although I guess a TSH is too high by Peat standards.

Finally, according to Peat, not enough salt can lead to magnesium loss. I’m not sure if this is a problem. We use salt freely and don’t restrict it.

Now, if my assumption is correct that his main problem is low magnesium, how would you treat him? Remember that the treatment has to be fast and highly efficient. We can no longer wait. What magnesium form do you think is the most efficient one to treat epilepsy? I don’t want to use magnesium chloride anymore for reasons described above – at least not orally. Do you think magnesium glycinate is a good form for this? What do you think of magnesium gluconate? From what I’ve read it is highly absorbable and it has the advantage that we know from the case histories of Lewis Barnett that it works. Magnesium threonate also looks very promising as it seems to increase magnesium in the brain more efficiently than other forms of magnesium. I also read several reports in the internet that is very calming and relaxing, which is definitely a good sign. On the other hand, few independent research exists on this magnesium form . So it’s hard to say whether its only marketing hype or not. Magnesium sulfate looks quite promising as a recent randomized controlled trial from Egypt has used this form to treat epilepsy in children.

Effect of Magnesium Supplementation for Children With Drug Resistant Idiopathic Epilepsy - Full Text View - ClinicalTrials.gov


I could not find a published paper from this study yet, but I found an abstract from a master thesis that is apparently based on the data of this trial and it says in the conclusions that magnesium reduced seizure frequency.

Application Control Violation


Magnesium sulfate was also recommended for the treatment of epilepsy by Adelle Davis. She recommended half a teaspoon in orange juice every morning. People on earth clinic report that it is highly effective:

Natural Treatment for Epilepsy


Magnesium sulfate(i.v.) is also used to prevent seizures in pregnant women.

However, magnesium sulfate is highly laxative and has an awful taste. Therefore, I don’t think giving it orally is good idea. I think it’s a good idea to apply Epsom salt bathes instead.

How much magnesium per day do you think is safe to give to a 3 year old child? He weighs about 15 kg.

What do you think of my suspicion that his high milk consumption promoted the lack of magnesium? Do you think it would be good to eliminate milk completely at least for while or do you think it’s enough to reduce the amount?

What do you think of the medication they prescribed to him (Sodium valproate)? Do you think it’s worth the risks?

What other things can we do that are both safe and effective to reduce the chances of having a seizure at night?

Thank you for taking the time to read all this.
 

HDD

Member
Joined
Nov 1, 2012
Messages
2,075
Progesterone has been used to stop seizures, but I agree with @jitsmonkey that you should email Ray Peat since your son is so young.
 

Peatful

Member
Joined
Dec 8, 2016
Messages
3,582


I'd recommend asking Ray directly


Progesterone has been used to stop seizures, but I agree with @jitsmonkey that you should email Ray Peat since your son is so young.

Yes to both of these.
Your son is so young, please reach out to Ray.

Also, gut health was my first thought with salt wasting being a second. (CSWS?)

Lastly, I am sorry you are going through this with your little one. But, I rest in knowing what an awesome fighter Mom he has in you.

Cswsepilepsy.org
(ESES)
 
Last edited:
OP
A

agnostic

Member
Joined
Dec 15, 2012
Messages
81
@Peatful
Thanks you for your kind words, but I'm actually a fighter dad :):

@HDD
I know that progesterone is probably the ultimate weapon against seizures but I wouldn't dare to give it to a three year old child. You're right I should reach out to him. Can anyone send me his email adress?

@jitsmonkey
Thanks, I forgot about the importance of avoiding gut irritants. Unfortunately, today my wife gave him some nuts to eat as a snack. Yikes!
 

Zpol

Member
Joined
Apr 14, 2013
Messages
929
Age
45
So sorry to hear about your little one.

I read this post this morning and didn't think that I had anything to contribute, but after going about my business, a thought came to me about how a virus coincided with the onset of the seizures. Viruses can linger in the body, become dormant, and then flare up again for a plethora of reasons and furthermore, the symptoms of the flare up can vary. Perhaps it is this situation that is happening with your son and seizures are the symptom of the virus. Certain viral diseases are known to have neurotropic effects including seizures. Lysine supplementation has been shown to be very helpful with viral diseases, especially in combination with reducing Arginine in the diet. Maybe you've already considered this possibility, but if not, you could possibly start your research search in the realm of viral diseases like HIV and Herpes viruses. To be clear, I'm not saying he might have those diseases, just saying you might get some clues from them as far as lysine dosages and safety for children info.
 

Peatful

Member
Joined
Dec 8, 2016
Messages
3,582
@agnostic
Ugh! So sorry Warrior Dad!
Truly.

Landau Kleffner Syndrome
 
Last edited:
OP
A

agnostic

Member
Joined
Dec 15, 2012
Messages
81
Here is brief update:

After my last posting, I did the following: I gave him epsom salt baths in the evenings for about 10 minutes. I tried to stop him from drinking the bath water, but couldn't totally avoid that he had a few sips. I don't think it harmed him as he didn't get diarrhea yet. I also made sure that he gets enough potassium, for example, by feeding him bananas. Furthermore, I increased the dose of magnesium glycinate a litte from 130mg once a day, to two times a day. I know it's a relatively large dose for his age, but the recent trial conducted in Egypt that I mentioned above used 400mg elemental magnesium and Lewis Barnett used to give 450mg. I also reduced his milk consumption a little bit, by partially replacing it with organic oat milk, which has been produced from fermented oats. This was a suggestion of my wife. I'm not sure it was a good idea.

The first night went very well and he slept through, but unfortunately in the second night he had again a grand mal seizure. This is a total bummer. I thought we were on the road to recovery because he had a very good day yesterday. He was definitely less agitated, less stiff and less jittery. He also was in a better mood, sang a lot, and I had the impression that his speech was better.

It's interesting that the seizure again occurred at about 5 am. The last five seizures all occurred around this time. He usually sleeps between 8 pm to 7 am. I wondering whether he has problem with hypoglycemia and cannot sustain blood sugar for so long or whether it's just the stress hormones that peak around this time.

One possible explanation for having a seizure last night but not the night before could also be that I did not watch his salt consumption enough. Since he hadn't much salty food for dinner the day before yesterday, I put a pinch of salt into his evening bottle of milk. Yesterday, he had not much salty food for dinner either, but I forgot to add salt to his bottle of milk. I will watch that more closely in the next days.

While I was searching the internet for answers, I also made a highly interesting discovery. I think I found the answer for why he developed myoclonic jerks while he was on magnesium. It's explained in the following blog post and referenced medical hypothesis paper.
A nutrient deficiency that can lead to mycolonic seizures or jerks? | Nutrition for Seizures

Per the reserach, “epileptics are generally mildly hypocalcemic, especially in the period before the seizure…Stress, which releases epinephrine and corticotropin, results in high serum citrate concentration, which probably contributes to decreased serum [Ca2+] just before a seizure”.

Many of the parents and adults I work with have read the literature on supporting their magnesium levels. However, supplementing calcium, or even vitamin D3 seems to be misunderstood. In this Naturopath’s professional experience he noted that when magnesium was supplemented in excess (often over 400mg) myoclonic seizures increased. It is important to note that when magnesium is used in excess it further depletes the levels of calcium.

If this theory is right, my son did not suffer from an excess of calcium as I speculated above, but rather from a deficiency, which I find highly puzzling given that he drank so much milk. Apparently, he didn't absorb much of all this calcium most likely due to insufficient Vitamin D. On the other hand, I gave him 1000 I.U. Vitamin D from about December 2016 to June 2017 and still had myoclonic jerks during that time, although I think they were indeed less severe and frequent than in the previous year, where I supplemented Vitamin D only sporadically. It's also interesting that the jerks stopped in the summer 2016 for a while and came back in autumn. I previously thought that this was due to the methylcobalamin that we started at that time. Now, I'm more convinced that this was simply due to the higher vitamin D levels in summer. It's also interesting that he never had seizure in the summer months. So, I will definitely start Vitamin D again and possibly give him even more than 1000 I.U. I want to check his vitamin D and parathyroid levels in the blood, to make sure to not overdose. Previously, I was very cautious about vitamin D because I know from my own experience that Vitamin D can cause stiff neck and tense muscles if my magnesium status is low. One person on a forum also mentioned that he had a relapse of seizures after a very high dose of Vitamin D. Hence, I thought it would be wise to only introduce it after having made sure magnesium levels are up.
 

Syncopated

Member
Joined
Jan 6, 2017
Messages
234
Location
Canada
Do you own a pet such as a cat or dog in the house?

If you do, your house will be littered with microscopic ascaris lumbricoides eggs everywhere.

Dr. H. R. Clark has found ascaris infestations as the main cause of epilepsy, especially in children because they play on the floor amongst the microscopic filth and are constantly putting their hands in their mouths.

The non toxic treatment is simple black Walnut Hull capsules available from the Dr. Clark Store. They are 360 mg and green in packaging.

Please google search for the Hulda Clark video called "The Cure" on YouTube. The video shows a young girl having seizures and after taking the black Walnut Hull capsules the seizures stopped.

Good luck and remember to get the specific 360mg green capsules from the Dr. Clark Store.
 

Syncopated

Member
Joined
Jan 6, 2017
Messages
234
Location
Canada
Yes, CBD oil from Charlotte's Web strain of cannabis is also effective. I don't know why.

Combine both treatments and you should have a very good success rate.
 

Spondive

Member
Joined
Oct 13, 2014
Messages
357
Was your son vaccinated? And have you done a hair analysis for toxic heavy metals?
 

Travis

Member
Joined
Jul 14, 2016
Messages
3,189
If it's never happened before in the summer, then you'd almost have to think it would be the Ca²⁺/Mg²⁺ ratio. Calcium can cause a contractile force in muscle in vitro, and seems to be the fundamental mediator of the process. The article I'd read explained it as the voltage spike which runs through the nerves being capable of shifting Ca²⁺ ions from the nerve to the muscle; it can do this because the negative charge inside the nerve, from electrons, influences the Ca²⁺ distribution. The Ca²⁺/Mg²⁺ ratio is so fundamental to muscle contraction that many scientists feel the need center the mechanism around it.

Vitamin K₁ is a cofactor for an enzyme which creates postranslational modification of proteins called γ-carboxylglutamate side-chains. These have the ability to chelate calcium, with the resultant circulating proteins which contain them being Ca²⁺ buffers. In experimental vitamin K deficiency (Warfarin™-induced) free calcium increases to the point where it binds with free phosphate, precipitates, and severely calcifies the arteries. Vitamin K₁ is so safe that an upper limit 'could not be established' (IOM).


Perhaps surprisingly: vitamin D₃ can actually be found in certain, and perhaps even many, types of leaves (see article below).

Napoli, J. "Solanum glaucophyllum as source of 1,25-dihydroxyvitamin D₃." Journal of Biological Chemistry (1977)

Leaves also have a higher Mg²⁺/Ca²⁺ ratio and plenty of vitamin K₁. I used to eat shredded goat cheddar on raw kale leaves, and also the same on steamed spinach. When I used to each cheese, I'd always eat it with leaves. This is actually very good. So I have to vote for perhaps eating more leaves and less cheese.
 

Syncopated

Member
Joined
Jan 6, 2017
Messages
234
Location
Canada
Read Peat's article on meat physiology. Peat writes about polyamines in aged meat and epilepsy.

Try to get fresh venison this fall and freeze it without ageing the meat. Don't feed your child any aged fruits and vegetables that have visible moldy or brown spots. Dr. H. R. Clark has discovered moldy food can contribute to schizophrenia and Vonderplanitz discovered moldy food can cause depression.

Try a route of cascara sagrada and make the grated carrot salads for increased bowel transit and low endotoxin.
 
OP
A

agnostic

Member
Joined
Dec 15, 2012
Messages
81
I wrote an email to Ray Peat after my last posting. This was his response:

The reason cortisol rises to a peak at dawn is that prolonged darkness is stressful. As blood glucose falls during the night, tissues become more sensitive to irritation, and bacterial toxins from the intestine, acting directly on nerves, and absorbed into the circulation, activate histamine and other regulatory substances. Foods that are slow to digest can become toxic irritants during the night. People have noticed that both fasting and “ketogenic” diets can prevent seizures—I think part of the effect is just eliminating the irritating, bacteria-supporting, foods. (Some people have noticed kids’ seizures stopping while they take antibiotics. I think this is because the intestinal toxins are reduced.) The carbonic anhydrase inhibitor acetazolamide was tested because of an idea that it would create conditions similar to fasting or a ketogenic diet, but its actual effect is to prevent the intracellular alkalinity produced by stress. The anti-androgenic effects of progesterone wouldn’t be an immediate issue, but it could be with prolonged use. I think you’ll probably be able to identify foods that are causing it. A bedtime snack that includes quite a bit of sugar and saturated fat, such as gum-free ice cream, can prevent some of the bowel-provoked nighttime problems. Vitamin D and calcium are essential for nerve stability.

Given that Peat emphasized Vitamin D and Calcium a lot, I continued to give him Vitamin D and raw cow's milk before bed and in the morning. I also gave him ice cream before bed for a few days and tried to avoid giving him gut irritating food for dinner. It really worked. He didn't have a seizure anymore for the whole December. Unfortunately, at the beginning of January he had one single seizure again, but I think it was because my wife had stopped to give him magnesium in the week before because she was convinced he was getting diarrhea from it. I then started to give him liquid magnesium glycinate from pure encapsulations (50mg elemental magnesium in the morgning at 50mg at night), which he seems to tolerate fine. I also still gave him about 5mg Pyridoxal-5-Phosphate and 1 bump of mixed tocopherols per day of the Health Natura brand.

He didn't have a seizure for a whole month again. However, about 2 weeks ago he catched the flu and had another 3-4 seizures during the time he was ill.

I think the combination of Vitamin D/K2 (Thorne), Pyridoxal-5-Phosphate, Magnesium Glycinate, and Vitamin E is really helping him, although it seems not to provide 100% protection during phases of illness.

@4PeatSake
Thanks. I read many good things about CBD, but unfortunately there seems to be no randomized controlled trials that backs it up, altough I read that studies are curently under way.

@Syncopated
No, there was never a pet in our house. Can this parasite be reliably tested? I would only favor antiparasitic treatment if it's really proven that he has it. I watched the scene in the video that you mentioned, but they say the girl had non-epilepitic seizures. So, it might not be totally comparable.

@Spondive
No, luckily, he was not vaccinated except for one tetanus shot after he had burnt his foot. However, that was after he had his first seizure. Luckily, he also never had a severe bacterial infection. So, we never had to give him antibiotics.
 
M

marikay

Guest
My younger sister had epilepsy in the 70’s and 80’s . After years of medication (nothing worked) someone suggested to my mom (who was a nurse) to let my sister eat all the sugar she wanted whenever she wanted. My mom did so, my sister pounded down the sugar (especially at night) and she never had another seizure, not even a slight one. Forty years later she is still seizure free, not to mention thin and still eating a ton of sugar. Most medical professionals tell her that she just grew out of the epilepsy. But she believes (as do my mom and I) that it was the sugar.

Anecdotal I know, but I think there is some research that suggests epilepsy may be related to severe anxiety. And sugar helps that. So there you are. Maybe it is worth trying.

Good luck.
 
OP
A

agnostic

Member
Joined
Dec 15, 2012
Messages
81
According to Ray Peat, Acetazolamide would be a safe anti-epileptic drug, but unfortunately on the Wikipedia page it says that it is basically used in menstrual-related epilepsy and as an add on to other treatments in refractory epilepsy. Apparently, in children is has not been tested so far. Hence, I doubt that I could convince a child-neurologist to prescribe it. However, there is another related drug called Sultiam. It's also a Sulfnonamide and a carbonic anhydrase inhibitor. It's not available in the US, but in most European countries (including Switzerland, where I live). Wikipedia says

Sultiame is the drug of choice for benign focal epilepsies of childhood (such as benign rolandic epilepsy) in the German-speaking countries and Israel. Historically, sultiame has been used to treat partial seizures. In Australia, it is currently registered for behavioural disorders associated with epilepsy; hyperkinetic behaviour; temporal lobe epilepsy; myoclonic seizures; grand malattacks; and Jacksonian seizures

So, it seems to be primarily used for focal epilepsy and not generalized epilepsy which my son suffers from. However, there is some evidence that it would also work for generalized epilepsy.

Given that carbonic anhydrase inhibitors are effective against epilepsy, I was also thinking about supplementing with Vitamin B1. According to this thread, B1 is a natural carbonic anhydrase inhibitor.
Thiamine Is A Carbonic Anhydrase Inhibitor As Effective As Acetazolamide

As far as I know, no human studies have directly tested the aniconvulsive potential of B1. However, in several animal models of epilepsy, B1 had a positive effect. For example, see here
Anticonvulsant effects of thiamine on pentylenetetrazole-induced seizure in mice. - PubMed - NCBI
Effects of thiamine and thiamine pyrophosphate on epileptic episode model established with caffeine in rats. - PubMed - NCBI

It has also been described in the literature that B1 deficiency can cause epilepsy:
Epilepsy in children with infantile thiamine deficiency. - PubMed - NCBI
Epileptic manifestations and vitamin B1 deficiency. - PubMed - NCBI

I guess allithiamine would be the best form due to its superior bioavailability. When I googled allithiamine and seizures I found this interesting review:
After becoming vaccine injured my daughter could no longer hold on to Thiamine (Vitamin B1) on a daily basis and eventually became bedridden with no use of her legs, foot drop, seizures, blurred vision. The majority of doctors she saw completely missed this issue. (The vaccine blocked thiamine trying to enter the body.) Finally a researcher physician informed us that Ecological carries a type of thiamin that would be absorbed correctly so we tried Allithiamine by Ecological Formulas it works! My daughter can walk again, read again and her seizure activity has stopped with high, daily doses of Allithiamine.
https://www.pureformulas.com/allith...sule-250-capsules-by-ecological-formulas.html
 

Sheila

Member
Joined
Nov 6, 2014
Messages
374
Hello Agnostic,
First of all, thank you for the detailed posts you have made regarding your son's current health situation. I feel for you, and all of your family and the heartache and stress this imbalance causes all concerned. I understand the pressure you are under to do the right thing by everyone concerned and the stress that is caused by never knowing when your son will have another seizure, especially the night time ones. You have my utmost respect in all of this.

In my experiences this is a very serious condition and not one where I would give suggestions lightly. I marvel and commend you for your patient and careful analysis and know that you will exert your reflective manner with anything that I write here; my comments are largely based on experiences and every presentation of every disease is different. They are for what they are worth to you, no more, no less and certainly not gospel or even maybe applicable to your situation.

It is my contention that an underlying state of energy deficit causes seizure activity. This deficit can be triggered by many things including deficiencies of certain nutrients, irritants, environmental toxins, pathogens, physical manipulations/exercises, physical changes (eg. growth spurts), pathogens and many more, and they can act alone and in concert to cause a seizure. This makes working out what 'caused the last seizure' very difficult indeed, and potentially a path to madness. I see seizure activity now (outside of acute, one-off presentations) as the reduction of energy by a collection of factors sufficient that a (sometimes protective) seizure was the body's best response. Much as I dislike mechanistic analogies, it to me is a bit like having a lot of plugs from different equipment in an extension board and trying to work out which one blew the main fuse. You can test and rule out/rule in all the equipment on the board only to find that it was all of them in concert that tripped the switch. But only on humid days when the wetter air improved conduction conditions further.

A clumsy analogy perhaps, and not one to suggest that the cause/causes can not be found and eliminated/reduced but to perhaps suggest that a 'single factorial' is unlikely as I am sure you already appreciate. And an increase in humidity is certainly one contributor, for reasons I'll leave for now.

And thus to B1 in all its forms. Whatever you may identify as having a potential to 'trip the fuse', I have learnt to look at what other symptoms one might expect from a deficiency - to make sure it is that nutrient because there are usually other signs to back up/or refute one's pick. I would not underestimate the possibility that one nutrient is specifically kept low to prevent other more major problems. In my experiences, unrelated to epilepsy per se, use of high dose thiamine/allithiamine depend - for one thing - upon good glycogen supplies and these are quickly exhausted with such repeat dosing. And in my experiences related to epileptic 'pictures' many of the b vitamins are highly allergenic when of a synthetic form, and/or at the higher doses that tend to be 'supplements'. If you induce histamine, even by accident, you have, I think, one factor that will lower seizure threshold. Thiamine may have an effect - until it doesn't - or it may be that mice don't run out of fuel as well as a human can especially wrt brain size and fuel need.

I have to say that Dr Peat's email absolutely concurs with my experiences, but that does not make it trivial to solve. Yet you are making progress, well done. Note also that sultiame is a sulphonamide. It is stated that it has no (normal for this class) antibacterial activity. I have not researched that to see how true it is, but it's also got some sulphur groups and these are currently a curiosity of mine, as sulphate levels in other challenged children can be very low leading to poorer detoxification/utilisation of drugs, chemicals, supplements etc. It is my intention to discuss sulphates and mag sulphate in particular with 'Mr Magnesium' @Amazoniac in due course, but more to research/think for me first. Oh and what do you know, thiamine contains sulphur too but before the fine minds of this forum tell me they're all different functional groups and to take a cold shower, note that the 'sulphur' in sulphur containing compounds has many different forms, and the significance of this from the energy perspective is not clear to me as yet (if ever).

Your wife is correct that internal magnesium can cause diarrhoea. Mag glycinate powder from any of the commercial suppliers is/was? (I may be out of date) adulterated with mag oxide, and that will cause diarrhoea and internal irritation - another potential trigger as I think is anything that increases histamine/serotonin at a 'sensitive' time. And simple magnesium withdrawal when the body is used to it can cause rebound issues including I suspect, reduced seizure threshold.

Mag sulphate is often tolerated poorly internally but my experiences suggest that externally (via warm bath) it is helpful probably for the magnesium (absorption levels seem weak) but also for the sulphate which has nervous system and gut strengthening properties. How much sulphate externally in this form might decrease copper absorption internally, I don't know. Keep an eye on the anions when researching cations (eg. Mg, Ca) they are not always just carriers. Probably not ever, just carriers.

Regarding more fuel and lotsa sugar again, I concur, but seizure prone children can be tricky to feed. Given free choice, they are often surprisingly self-medicating in their food choices. And also, in their reluctance/acceptance in taking supplements etc., there is a level of understanding here in some children that is far ahead of our theories. I have learned to pay attention to this to figure out what they are trying to tell us. This 'free choice' has been instructive and helpful. I have seen a lot fixed with ad libitum sugar if the parents aren't fainting with horror in the process. Making their choices 'too healthy' as is decreed by mainstream propaganda has, in my experience, been a backward step in the seizure prone and, frankly, in many other young children with significant health conditions. That doesn't mean I am in favour of 'dunkin' donuts' of course. Fuel levels are absolutely key and can turn a supplement (or anything) from a help to a hindrance in seconds. This I think is responsible for variable results with certain supplements..if the 'receiving' context changes, don't expect the same result. And, since the context is always changing, absorption is always changing depending on energy available and/or sufficiency or both, the same dose of anything every day may not be ideal either. And if doses have to be repeatedly increased to keep something stable, I have found one is missing some other piece of the puzzle and even this too will fail eventually (as, in the body's best interests, it should).

Before I finish, as I am sure this post is far too long already, a comment or two on worm infestations. Thank you Syncopated for your suggestion on this, would have forgotten and this can be a big issue. Absolutely worm burden (and there are a few types) can cause seizures in susceptible people, and animals (the incidence is rising in domestic dogs btw., but not all domestic dogs that have seizures have worm burden sufficient) and testing for worms in people is usually via stool test. These are not that accurate and often give false negatives because contrary to popular medical opinion (which usually wants very little to do with this icky subject) worms do not shed/get expelled all the time so not all poos contain worms, but that doesn't mean the person doesn't have a worm burden.

However once you have a test done and there's a no worm result, your medical professional may think that is the end of the matter. It may, or it certainly may not be. There are some Elisa tests being developed for better accuracy I believe and if anyone has anything on reliable human helminth testing in this vein, I would be grateful for more information.

Another medical 'test' for worms (and some other pathogens) is to look at eosinophil (a type of white blood cell) count but again, with worms they are not always elevated depending on the competence of the host immune system response or the worm in question. Worm burden can be more reliably estimated by physical symptoms, itchy bottom, restlessness at night (aha!), bloated stomach but lean elsewhere, constipation, diarrhoea, parental stool examination (care!) and they don't always come from one's own pets either. An outside sandpit makes a good litter box for the neighbour's cat....or dog. And no, respectfully, Black Walnut is not 'non toxic' and its effects can induce seizures (by reducing seizure threshold) in several ways, as can the sudden elimination/irritation of worms so I would advise caution. I would not use any anti-wormer personally without a good reason with this symptom picture but I would take the potential, and that of any other latent pathogen (check teeth) seriously. I also wonder whether low sulphate levels, since sulphur was an old anti-parasitic, predispose to worm infestation. And when I say 'infestation' I mean 'a pathogen or pathogen level able to cause deleterious symptoms' - a robust system will deal with them. Hopefully.

So possibly not a lot of help but you never know, there might be something of use in here for you and your family. Either way, I really do wish you all the best and will follow your progress reports with interest.

Sincerely,
Sheila
 
Last edited:

Amazoniac

Member
Joined
Sep 10, 2014
Messages
8,583
Location
Not Uganda
Natural Approaches to Elipepsy

Travisord often writes about the effects of immunogenic proteins on interferon and how tryptophan is affected reflecting in serotonin metabolism. Since that list includes melatonin as something that they found beneficial, this is probably the case. Consider poor digestion of any kind. Low calcium et magnesium (according to the tissue mineral analysts) is the pattern of fast metabolism. You shouldn't bother with calcium since he already consumes plenty, you can focus on magnesium. Our fortune teller's thread was updated, it's worth reading the other posts. Those two minerals have a sedating and calming effect on metabolism, this is why people that have it slow, are less susceptible to these reactions. However shortage of nutrients tend to occur faster, and this can lead to all sorts of problems starting with foods that's not properly digested. If I remember it right, gurus that have seizures usually have various problems with food digestion, which in turn irritates the intestines or feeds infections. When the bodee has a shortage of nutrients, it begins to have problems metabolizing a lot of them, so in that sense even nutrients can become pathogens when they can't be metabolized properly and start to interact in the body in unwanted ways.

If I was in your position, I would give the kidzord all the fat-solubles combined in spread doses and away from calcium meals. Or perhaps leaving vit D for topical supplementation but concomitant with the others.

Raw whole milk, egg yolks and pineapfel juice and a bit of honey if needed can make a good bedtime meal. If you find the pineapfel juice too harsh you can use its jam or substitute for other fruit juices. You can puncture the yolk out of its sac to minimize risk of provoking immune response. It's worth opening anesthesiology book , chaper 'Travisordering the opioid confusion' :all there
I shared this elsewhere, but here it is again:
- Zinc and Manganese in the Schizophrenias - Carl C. Pfeiffer, Ph.D., M.D. and Scott LaMola, B.S "seizure" "epilep"

- Balancing Zinc And Copper In The Body
- Copper Deficiency In Humans

Can you rent an electromagnetic of field meter?

Hopefully @Zeus releases his natural B-vitamins extract soon. My crystal ball told me it's going to be called Coenzymax. Personally I try to avoid isolated B-vitamin supplementation, unless there's a clear need for specific ones.
I would be suggesting to keep his Respiregen around if needed if it was available. You know.. his impeccable niacinamide.

A thread about epilepsy and there's only one 'glycine' mention and it's because of magnesium. Glycine and taurine are worth trying (with food sources first). Again, anesthesiology book , chapter 'Taurine: burtlancasting a light on magnesium's way' .all dere

- Magnesium Chloride And Magnesium Sulfate: A Comparison
- Magnesium Chloride Oral Use

- People with idiopathic intractable epilepsy 'often deficient in selenium and zinc' | Epilepsy Research UK
 
Last edited:

Similar threads

Back
Top Bottom