Exploring the Gut-Brain Connection and Photosensitivity

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With regard to your first study posted above, the Nutrivene supplements Jon takes are meant to counteract the effects of Pyridoxine deficiency (along with zinc deficiency and other common deficiencies in DS).
http://www.lleichtman.org/tni.shtml

We have seen that removing the supplements caused a sudden increase in tonic-clonic seizures, and restoring them caused lessoning of seizures. So...they are working somehow...not sure how...although not completely solving the problem.
 
Elevated hydrogen sulfide levels and seizures:
http://www.ncbi.nlm.nih.gov/pubmed/16378105

GABA-BR (Gamma-aminobutyric acid B receptor) regulates hydrogen sulfide levels, and higher levels are noted in febrile seizures. Phaclofen is a GABABR inhibitor.
http://www.ncbi.nlm.nih.gov/pubmed/16613710

Phaclofen, also known as Saclofen, has an anti-epileptic effect
http://www.ask.com/wiki/Saclofen?qsrc=3044

Apparently there are several types of GABA -- GABA-a, GABA-b, GABA-c, and GABA-d. Some AEDs enhance GABA (such as the Benzos with GABA-a), and some inhibit GABA (such as Valproic Acid/Depakoe with GABA-t). Now, I'm not sure whether these different types of GABA have different influences on the brain and different types of epilepsy, but it might explain why benzos don't work for Jon, but Depakote did (until he had to be weaned off due to liver issues).

But at any rate, it appears that GABA-b modulates hydrogen sulfide, and kids with DS (along with folks with IBD) tend to have higher levels of hydrogen sulfide, and hydrogen sulfide can trigger seizures, thus some way of inhibiting GABA-b or otherwise reducing hydrogen sulfide (one way would be reducing bacteria that produce it) would possibly help with Jon's seizures.

I haven't been able to find any more info on Saclofen -- such as side effects, or even if it's available as a prescription drug.
 
CathyAnn31 said:
Ok I'm confused after reading 10 pages of this thread. I thought it was on sunshine and seizures? Not trying to be rude, just an observation I made.
Click to expand...

Good point, CathyAnn -- we do tend to stray off on bunny trails. However, we keep coming back (eventually) to photosensitive seizures (i.e. sunshine and seizures).

What we're trying to work out is not only does sunshine (and other kinds of bright or flashy lights) tend to trigger seizures in some people, but WHY??

If we can nail this down...it would help those of us who suffer with this type of seizures find the optimal drug or therapy or even dietary management for their condition.

So...we've been looking at stuff like the role that the hypothalamus plays, and the role that gut issues can play in photosensitive seizures, and most recently, I've been looking at the role of hydrogen sulfide levels -- which can have significant influence on the eyes, and perhaps photosensitivity.

So...please forgive us as we digress into our bunny trails (or maybe it's more like falling into the rabbit hole of Alice in Wonderland), because perhaps they're all interconnected and will lead us back to being in the sunshine without having seizures.
 
Life for a kid with photosensitive seizures:

1) You used to like going to school, but now that's out. The sunlight filtering through the trees on the ride to school triggers seizures, as does the smart board in your classroom. Plus...you're having seizures almost every day, so feel like crap most of the time, and are pretty laid low with headaches and med-induced sedation.

2) You used to love playing outside, but now the sun reflecting off surfaces triggers seizures. You recently went down to the lake to feed the turtles, but the sun reflecting off the water triggered a seizure. Now you hope for cloudy days, so you can go out.

3) Your favorite activity used to be swimming, but the reflection of the sun off the water keeps you away now.

4) Your 2nd favorite activity used to be eating, but now the seizure meds have robbed your appetite, so that you just pick at your food, and only manage a few bites.

5) You used to like to watch Vegggie Tales and Elmo and Word World, but now you can no longer watch your favorite videos.

6) You can no longer speak -- the seizures and seizure meds robbed you of that.

7) You used to love going to the mall, and going to the kids play area and playing in the ball pit, but the bright lights at the mall trigger seizures.

8) You have to spend most of your days at home, with sheer draperies drawn, and muted lights on. Kinda boring for a kid. Especially since you can't watch TV, and can't play with any of your toys that have flashy lights on them. You can read, and do puzzles, and listen to music, and that's pretty much it.

Your Mom hopes we can get it fixed.
 
I want to let you know your daughter is not alone. I have had seizures for 46 years and I am very photosensitive. When I was a child, my mother would take me to meetings at church on Wednesdays. As when traveled south, the setting sun would be very bright and would be focused right in my eyes. Once I got to to church, I would have a seizure. Believe it or not, I had one doctor who tried to tell me I had the seizures because I did not want to go to church. Any time the sun is low in the sky, whether setting or rising, I have to be careful and avoid it as much as possible. The sun reflecting off of lake water will also trigger a seizure. I have read that sunglasses with blue polarized lenses are the best to use.
 
Karen, that's very profound that ampicillin seemed to be the reason for an entire year seizure-free. This drug is known to have activity against gram-negative bacteria where overgrowth may be secondary to viral infection. The same may be true for protozoal infection, as ampicillin appears to be used in both viral and protozoal infection. http://www.ncbi.nlm.nih.gov/pubmed/15243927

A year seizure-free after ampicillin seems similar to the four months my dog was seizure-free after a couple months of colloidal silver. Things to consider are the possibility of creating drug resistance, so using natural, broad spectrum antimicrobials/antivirals such as colloidal silver, propolis, oregano oil and grapefruit seed extract may be good, but carefully as they all may cause reaction in the beginning. The antibiotic Rifaximin may also be considered, working only in the gut. I put my dog on Rifaximin for a month and she was then able to withstand relatively large doses of probiotics without seizure whereas previously even a small dose of certain probiotics caused seizure. The Rifaximin also caused incontinence while sleeping, but that cleared-up after a few weeks of probiotics.

Whether gut origin of photosensitive seizure is a matter of hydrogen sulfide or biosynthesis of several factors such as oxalic acid, histamine, glycolic acid, endotoxin . . . the point is flora is out of balance. Also, keep in mind there is such thing as vitamin B6 resistance in hyperoxaluria:
http://www.ncbi.nlm.nih.gov/pubmed/2708072

Off the trail for a moment, hydrogen sulfide is said to be the worst aspect of global warming when overgrown bacteria in oceans spew gas causing mass extinction. The same mechanisms in the body operate on a macro, global scale and this is why I connect our gut problems to the world's sanitation issues. Hydrogen sulfide is also studied related to the pancreas, inhibiting insulin release and causing damage to islet cells possibly leading to the diabetes.
www.jstage.jst.go.jp/article/jphs/116/1/116_11R01CP/_pdf
In the past, I've researched protozoa and flukes in relation to hydrogen sulfide oxidation and the pancreas and damage or dysregulation of islet ducts.

Interesting paper on the relationship of hydrogen sulfide and bacterial toxin in inflammation:
http://www.fasebj.org/content/19/9/1196.full
 
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karend03 said:
Any time the sun is low in the sky, whether setting or rising, I have to be careful and avoid it as much as possible.
Click to expand...

karen, it's also known UV light is stronger on cloudy, hazy days. With my dog's photosensitive seizures, she seemed especially prone in morning light with the sun low in the sky. It seems possible excess histamine of gut origin may play a role in eye inflammation and optic neuritis (inflammation of the optic nerve). This study shows histamine is "highest during the morning, histamine might play a role in preparing the retina to operate in daylight."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3342641/

Gut microbiota are known to make their own histamine and also regulate its release from mast cells. There's also connection to histamine receptors in the hypothalamus. H3 in particular is studied in relation to pleasure, addiction, obesity and alcoholism, perhaps a factor in self-induced photosensitive seizure known as Sunflower Syndrome.

Antihistamines reduce sun-sneeze:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1307391/

Maybe this hypothalamic stimulation via UV light also explains mysterious sun-sneezing, Nakamova, please see here:
http://www.ncbi.nlm.nih.gov/pubmed/22529193

Perhaps related is the "stomach sneeze reflex" after a large meal:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1015683/
 
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Ha ha! My Nana and I both had/have that sunshine sneezing thing (but no seizures, thank God).

Went to church today, and they already had the Christmas tree up!! With bright flashy lights!! Just made me start dreading the upcoming holiday season and all the new stuff we're going to have to avoid.

Jon is quite poorly again. He's not having seizures -- that's one blessing -- but has dipped into pretty severe acidosis from an increase in the Zonegran. His bicarb levels are quite low, even with taking Cytra-K (a buffer for the kidneys). Vomiting and very severe diarrhea. Soooooooooo discouraging, because the Zonegran at higher doses really has been effective. But Jon's body can't handle it.

It's not helping Jon's gut issues that the Zonegran, and Cytra K, and all his other meds can cause gastrointestinal distress.

So...now we have to decide whether to reduce the Zonegran (and probably have more seizures) or reduce the ratio of the diet to hopefully relieve the acidosis.
 
Turns out the vomitng and recent round of diarrhea was a stomach virus (now I have it -- joy to the world!)

But, he's still in acidosis, according to blood tests, and I'm not sure how the vomiting and diarrhea are affecting that -- we're keeping him well hydrated, and haven't given him the fish oil or other supplements until he's a bit more stable.

He gets 24 mgs of acetyl L-carnitine in his supplements each day. Haven't used NAC -- but side effects of that include vomiting and diarrhea.
 
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His acidosis is caused by:
1) the Ketogenic diet
2) Zonegran

Both are notorious for causing metabolic acidosis. Kids on the Keto diet are usually prescribed a buffer (such as Cytra-K, a potassium/citric acid powder) or are advised to mix baking soda with water, and to drink a lot of water to offset the effects of the diet on the kidneys. If this is done, kidney stones are quite rare (about 1%).

Two AEDs -- Zonegran and Topamax -- are also notororious for causing metabolic acidosis. If a child is on both the Keto diet and one of these meds -- it's a dangerous combo.

Unfortunately, these are the two meds that are the most effective for Jon -- most other meds have pretty much been like drinking water with regard to stopping seizures (except that drinking water doesn't put you into a zombie state, make you psychotic, mess up your liver, cause bone marrow problems, make you depressed, make you aggressive, make you super-hyperactive, etc.)

I don't see any reason to believe that hyperoxaluria is at all involved.
 
SIBO is strongly associated with acidosis. I believe there's a strong argument that SIBO is a root cause of hyperoxaluria as described above (gram-negative bacteria such as enterobacter produce glycerol, building block of ethylene glycol).

Interesting recent paper on brain inflammation with focus on mast cells:
http://www.jneuroinflammation.com/content/8/1/168

Microbes are known to regulate histamine release from mast cells as well as make their own histamine. Gut origin is one thing, but actual brain infection is another and it may be underestimated/underdiagnosed. The paper talks about particular flavanoids to inhibit mast cells, but doesn't mention one source of flavanoids which is bee propolis.

The paper doesn't talk about intestinal origin of brain inflammation. I sound like a broken record regarding use of gelatin to trap toxins and condition the gut, but just now learning of something similar and maybe more powerful, including diarrhea prevention:
http://en.wikipedia.org/wiki/Cholestyramine

Also, Himalayan Sea Salt has good intestinal detox function and minerals activating enzymes.

Here's a packed blog about brain infection: http://perfecthealthdiet.com/2011/0...ix-a-brain-infection/comment-page-1/#comments
 
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Ha ha -- I wonder what sea is near the Himalaya's for them to get salt?? Having lived on the Himalayan plateau for 2 years, I don't remember seeing any! I suspect that's actually the rock salt that comes from Pakistan -- a bit pinkish in color from gypsum or something.

Actually, I just heard from nutritionist back in U.S. and she recommended Morton Lite Salt (1/4 tsp added to food each day) because it has potassium, chloride, and sodium in it, all of which Jon needs. So, having my brother send us some from the States. She also recommended a phosphorous supplement -- first time I've ever heard of that. And alkaline water (1/8 tsp baking soda mixed with 1 cup water, 4 times a day) which we'd already started giving Jon.

I had to put Jon on a fast for 24 hours because of the vomiting, and then after two days, had to go back on the 24 hour fast because of bad diarrhea, and yesterday for an 8 hour fast, but he handled supper ok, so hopefully back on track. He got loads of gelatin this past week, in part because that was one way of keeping him hydrated. I went out and bought that McGarrett Gelatin -- have no idea what it is, but I guess it's something like Knox.

As far as brain infection or inflammation -- Jon's MRI last month didn't show anything -- the one he had in March 2011 showed huge amounts of inflammation in his sinus and ear areas (he had an ear/sinus infection at the time) and then lots of non-specific foci in the white matter, but the neurologist looked at the two MRI's with me, and the most recent one showed only one or two tiny foci, so whatever that was in 2011 cleared up -- probably thanks to the Keto diet. That's very good news, but doesn't explain the current surge in seizures (which have been remarkably well controlled this week, in spite of Jon being quite ill).

Not sure what all this vomiting and diarrhea is going to do to his already messed up gut.
 
I've been learning about an enzyme other than nattokinase called serrapeptase with anti-inflammatory activity and probably antimicrobial. It's known to dissolve scar tissue which may be an issue in the gut (adhesions in Peyer's Patches). I'm not sure if there's much information regarding effect in brain and eyes.

Here's one page about it:
http://www.lef.org/magazine/mag2003/sep2003_report_aas_01.htm

There's another version of it called Serrazimes:
http://www.healthworx.ca/viewcategory/35

Then there's one called lumbrokinase enzyme from earthworms thought to be the most powerful of all three.

Obviously, one should be very careful with any of these things . . . serrapeptase is often teamed with antibiotics including ampicillin for greater effect since it dissolves biofilm.

These enzymes are known to dissolve plaque in arteries and this is related to one of the reasons I believe the ketogenic diet is effective: sugar and carbohydrates are the backbone of all fat such as triglycerides and are the reason for plaque in arteries. Here's a doctor talking about it, an hour-long presentation:


The more fat (cholesterol), the more lipid oxidation causing inflammation. I realize this is very simplified and I still have a lot to learn about it . . .
 
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Well, back from Neurologist & Nutritionist.

Neurologist decided that Item #1 on the agenda is clearing up the diarrhea, because until that happens, he's not going to be absorbing his meds correctly, nor is he going to be absorbing the fats in the Keto diet. And perhaps the gut issues are actually causing the seizures. So, no changes to meds for the time being. Instead...he has scheduled Jon for a GI consultation (since this is a chronic condition -- Jonathan's growth chart showed that he actually weighs less now at almost 9 years old than he did 3 years ago, and he's 1/4 pound away from being underweight),

Until then, we're working with the new Pediatrician/Nutritionist. The good news is that his electrolytes are looking a LOT better!! Bicarb level back up to 19. That might be from lowering the ratio on the diet, or adding a little baking soda to his water (or...maybe from not absorbing Zonegran well?).

Neurologist is flying to America tomorrow for the American Epilepsy Society meeting in San Diego, so Jon isn't allowed to have any crisis for the next week. So we can't do anything this week that might trigger seizures.

The new Pediatrician (specializing in nutrition) thinks that the diet IS still working for Jon (for instance, he has excellent seizure control when fasting) -- but that his GI infection back in March created a mucus build-up in his gut, that is making it hard for the fats (and other nutrients) to be absorbed, and this is what is causing the diarrhea (along with probable over-proliferation of the bad bacteria) and lack of weight gain and growth. Because the fats are not being correctly absorbed, the diet is skewed -- even though what's going into his mouth is correct, what is being absorbed through his intestines is questionable. Same for meds. So, her plan of attack:

1) Pancreatic Enzymes (amylase, lipase, protease) -- to help digest the fats and other food into smaller molecules that will be better absorbed.
2) Zinc (mega-dose) to treat diarrhea and mucus build-up
3) Probiotics (we will start these next week when neurologist gets back in town, because they can temporarily lower seizure threshhold -- bacterial and fungal die-off can release toxins)
4) Using small amount MCT oil with each meal to help maintain seizure control & ketosis and to help with weight management & avoiding muscle loss. MCT oil is absorbed through the liver, rather than the intestines, so is recommended for individuals with gut issues.

So...going to give this treatment plan a whirl, and see what happens.
 
So complicated! I hope this regimen does the trick.
 
Other enzymes to consider may be papain and bromelain. Be careful with enzyme use on empty stomach especially. Intestinal irritation may be a factor in seizure.

Lipase deficiency may be caused by SIBO:
http://www.ncbi.nlm.nih.gov/pubmed/21745411

Microbes also make lipase, it's not just about pancreatic production.

Bromelain is often combined with quercetin which is part of this mast cell deactivation formula getting excellent reviews regarding both gut and brain, NeuroProtek:
[ame="http://www.amazon.com/Algonot-NeuroProtek-1-Bottle/dp/B0045JB858"]Amazon.com: NeuroProtek 1 Bottle: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51Szypd3nNL.@@AMEPARAM@@51Szypd3nNL[/ame]

I've read zinc picolinate is the form easiest on the gut and best for systemic use (as opposed to gluconate for ears). It supposedly takes a couple months for zinc to balance copper, allowing copper to do its job balancing flora.
 
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