Dietary changes and seizure control

[Zoe]

On other fronts, we were at an event sponsored by my husband's department on Friday night, and another family was there with their elementary aged boy in a wheelchair. Turns out this boy got the same virus (apparently) that Jon got and is still paralyzed in the one leg after a week. And this boy doesn't have epilepsy. Our neurologist was assuming that Jon's temporary paralysis was the Todd's paralysis that some people get after a seizure (and which goes away in a day or two). But the odd thing is that Jon was walking around an hour or so after the seizure, but then was paralyzed in the left leg the next day. If it were Todd's, would he have been immediately paralyzed rather than the next day?

So, I went online, and the CDC has mention of a new virus that is affecting elementary aged children around the country (34 states). It starts as an upper respiratory infection, and then in some children progresses to neurological events, such as seizures and on-going paralysis (accompanied by lesions on spinal cord and brain stem). Something like polio. They think it's some sort of entero virus.
http://www.cdc.gov/ncird/investigation/viral/2014-15/investigation.html

So, now I'm wondering if Jon's seizure and temporary paralysis was caused by this virus that affected the other boy. And, if so, why did Jon bounce back, when the other boy (and most other children with this virus) remain paralyzed? Could it be the neuroprotective effect of the Ketogenic diet? Or the probiotics he was on? Or the Zonegran?

Karen,


Maybe you and the parents of the other child can compare notes to look for similarities and dissimlarities? It may be worth a try to get one of the kids' physicians to get blood samples of each child if that will help determine if they have\had the same infection.

Considering the CDC investigation, it may be worthwhile to document as well as you can, his symptoms as they came on, change, improve, whatever. As with side effects of meds, the information you gather may help point you to what you can do to help his recovery.

 

[Blonde Angel]

Nothing beats parent networking with others who just may have similar challenges...

 

[Blonde Angel]

im looking at a product called " Coconut Clarity" that's made by " niulife". It's handcrafted, cold pressed DME extra virgin coconut oil States it's organic and fairly traded. Has MCT oil, organic chia seed oil, organic flax seed oil, organic camelina oil and red Palm oil. But I want to ok it with Dr Tabrizian.
I've not heard of camelina oil...
www.niulife.com
Ps I'm not promoting this product, I've never used it so go seek appropriate advice....

 

[KarenB]

It's been 3 weeks since the onset of Jon's illness, and about 11 days since the seizure and paralysis (which resolved pretty much by the next day). He's not had any noticeable symptoms in the last week, except for sleeping a bit more than usual. I expect that the virus has probably cleared his system. But I did document everything carefully, as usual.

When I talked to the other family, they had not yet seen a neurologist, so I recommended them to ours. And I sent the neurologist an email about the other case.

 

[Nakamova]

Glad that he seems to be feeling better, and that the paralysis was only temporary.

 

[Keith]

On other fronts, we were at an event sponsored by my husband's department on Friday night, and another family was there with their elementary aged boy in a wheelchair. Turns out this boy got the same virus (apparently) that Jon got and is still paralyzed in the one leg after a week. And this boy doesn't have epilepsy. Our neurologist was assuming that Jon's temporary paralysis was the Todd's paralysis that some people get after a seizure (and which goes away in a day or two). But the odd thing is that Jon was walking around an hour or so after the seizure, but then was paralyzed in the left leg the next day. If it were Todd's, would he have been immediately paralyzed rather than the next day?

So, I went online, and the CDC has mention of a new virus that is affecting elementary aged children around the country (34 states). It starts as an upper respiratory infection, and then in some children progresses to neurological events, such as seizures and on-going paralysis (accompanied by lesions on spinal cord and brain stem). Something like polio. They think it's some sort of entero virus.
http://www.cdc.gov/ncird/investigation/viral/2014-15/investigation.html

So, now I'm wondering if Jon's seizure and temporary paralysis was caused by this virus that affected the other boy. And, if so, why did Jon bounce back, when the other boy (and most other children with this virus) remain paralyzed? Could it be the neuroprotective effect of the Ketogenic diet? Or the probiotics he was on? Or the Zonegran?

Karen, I'd suspect the paralysis is nerve related where there's some nerve connection between the intestines and legs. Similarly, there's nerve connection between intestines and lower back, hence sciatica associated with bowels. Maybe the route to the legs from the gut is the sciatic nerve.

This seems to be a common problem in dogs. One I know just had severe diarrhea last week along with paralysis/weakness of one leg:
https://www.google.com/search?q=dog...4.11840j0j7&sourceid=chrome&es_sm=91&ie=UTF-8

So, I wonder if Jon also had lower back pain . . .

 

[KarenB]

Hard to say. I do know that children with the entero-virus type of paralysis (which is usually not total, but one of the arms or legs) often present with lesions on the spinal cord or brain stem, following the viral infection. In Jon's case, his pediatrician and neurologist thought it was the Todd's paralysis (which he's had several times before), that is somewhat common in temporal lobe epilepsy - where a seizure will affect the opposite side of the body - so a seizure in the right temporal lobe would cause weakness or paralysis on the left side - something like a stroke. Except that Todds usually clears up within 48 hours.

 

[seagull]

I just eaten yoghurt and turmeric (as the other poster different thread) that really is most acquired taste

 

[AlohaBird]

You can put yoghurt in a curry but I prefer coconut cream. I bet coconut yoghurt would be good. I make that sometimes.

 

[KarenB]

Quick update on Jon - in the past month (although no dietary changes) his ketones have been dropping very low, and glucose levels over 100 (when they're usually in low 60's to low 80's. He's had 5 seizures, 2 this past weekend. His neurologist doesn't want to raise his Zonegran because of side effects, so his team is working on dietary changes to regain seizure control. We raised his MCT oil from 4 grams to 8 with every meal (going from daily total of 12 to 24/day) but that didn't seem to help much. Puberty hormones can lower ketones, but it seemed everything went south after his illness (and antibiotics) last month, as ketones and glucose had been fine before that. My theory was that he had gut inflammation as an aftermath of the illness and antibiotics (even though on daily probiotics) -- this would cause malabsorbtion of fats (and his endocrinologist confirmed that infection or inflammation could cause high glucose levels). We increased his ratio of fat to carbs earlier this week, and started giving almost all anti-inflammatory foods, and saw a modest improvement, but then on Tuesday, finally got script for pancreatic enzymes and he started that with Tues. supper. Pancreatic enzymes break down the fats and make them more easily absorbed. Since his first dose of enzymes, his ketones have been back up in the therapeutic range -- even a tad too high last night. We're hopeful we're back on track for seizure freedom.

 

[Nakamova]

Thanks for the update Karen. I suspect that anti-inflammatory treatments will play a greater role in treating seizures in the future...

 

[seagull]

I started this diet and finished it,I have never felt so ill I tried the turmeric and my head excruciating and been throwing up..but I have looked into it and if do it right can be helpful I obviously doing it wrong

 

[Zoe]

Karen,

Thanks for the update. Hope he keeps improving.

 

[Keith]

Karen, my prayers. Hopefully, the enzymes will work again. Perhaps they do more than help with absorption of fat, but also reduce offending organisms and viruses. Are you also using high dose zinc and continuing probiotics as you did two years ago?

Here's a theory about what may be happening; I hope it's helpful. Maybe the antibiotics and the illness (viral?) lowered protective microbes in the small intestine and allowed overgrowth of LPS toxin-producing microbes (gram-negative bacteria). The bacteria and the LPS toxins bind to triglycerides (chylomicrons) which enter circulation via lymphatics of the intestine. This would explain the higher blood sugar levels as caused by insulin resistance. The high blood sugar can then swing very low due to insulin release (reactive hypoglycemia as cause of seizure).

LPS toxins are also a cause of seizure, so lowering triglycerides may be a good thing. Things to lower triglycerides are niacin, fish oil and plant sterols (also anti-inflammatory). If you try niacin, begin with small doses and work up to avoid too much flushing. Just my ideas, I know they may seem extreme, but this route of LPS toxins entering circulation from the gut is very concerning.

 

[KarenB]

Seagull -- what diet did you start? If it was the ketogenic diet -- that should always be done under medical supervision. You need to have labs for glucose levels and electrolytes. It's common to have headaches and nausea the first week or so of the diet, as the brain switches from glucose to ketones for fuel. One reason for the headaches can be dehydration (you lose a lot of water in the first few days). It's important to drink a cup of water each hour when initiating (and a little lemon juice in there will help).

 

[KarenB]

Karen, my prayers. Hopefully, the enzymes will work again. Perhaps they do more than help with absorption of fat, but also reduce offending organisms and viruses.
I was wondering about this, because not only are his ketones back up where they should be, but his glucose is back down in the 60's to 80's range. It seems they're having an effect on the inflammation

Are you also using high dose zinc and continuing probiotics as you did two years ago? he's on probiotics, and occasional doses of zinc -- zinc not all the time because his levels got too high at one point

Here's a theory about what may be happening; I hope it's helpful. Maybe the antibiotics and the illness (viral?) lowered protective microbes in the small intestine and allowed overgrowth of LPS toxin-producing microbes (gram-negative bacteria). The bacteria and the LPS toxins bind to triglycerides (chylomicrons) which enter circulation via lymphatics of the intestine. This would explain the higher blood sugar levels as caused by insulin resistance. The high blood sugar can then swing very low due to insulin release (reactive hypoglycemia as cause of seizure). his triglycerides and cholesterol were tested shortly after his illness and were normal. We've been testing glucose several times a day. The lowest it's been is 64, and that was today.

LPS toxins are also a cause of seizure, so lowering triglycerides may be a good thing. Things to lower triglycerides are niacin, fish oil and plant sterols (also anti-inflammatory). If you try niacin, begin with small doses and work up to avoid too much flushing. Just my ideas, I know they may seem extreme, but this route of LPS toxins entering circulation from the gut is very concerning.
Jon is already on fish oil. He gets the niacinamide form of B3.

 

[Keith]

Karen, thanks for your reply. Here's an older study about pancreatic enzymes stating gram-negative bacteria are more susceptible than gram-positive. These results are also stated in newer papers. There's also discussion about inactivation of viruses:
http://jem.rupress.org/content/64/1/19.full.pdf
http://www.sciencedirect.com/science/article/pii/0378517382901004
https://books.google.com/books?id=n...reatic enzymes gram-negative bacteria&f=false
http://www.researchgate.net/publication/19278451_Antibacterial_activity_of_the_pancreatic_fluid

That's amazing you had his lipids tested shortly after illness. Maybe the levels are one thing, but the toxins attached to the fats is another.

My understanding is niacinamide doesn't affect lipid levels the way niacin does, though they're probably both antimicrobial. It's ok to use both in my understanding as they act in different ways. Niacin converts to niacinamide in the body. Therapeutic dose is another matter.

Is the probiotic you're using the single strain Culturelle? Did you ever find out which product you were using successfully two years ago?

 

[seagull]

You can put yoghurt in a curry but I prefer coconut cream. I bet coconut yoghurt would be good. I make that sometimes.

Coconut cream is that same as the oil..Bc I tried the virgin coconut oil must say I tasted better things.i mixed yoghurt turmeric and the oil then spent night throwing up with worse head ache of my life

 

[AlohaBird]

Coconut cream is that same as the oil..Bc I tried the virgin coconut oil must say I tasted better things.i mixed yoghurt turmeric and the oil then spent night throwing up with worse head ache of my life

No. Coconut oil and coconut cream are two different things. One is just the pure oil, the cream is mixed up coconut oil and meat and water (the whole coconut) to the consistency and color of cream.

If you mixed a whole bunch of turmeric with a whole bunch of straight coconut oil, yes, that could keep you in the bathroom for a while. The oil is better left for cooking.

Coconut cream is tastier than the oil, mixes better, and, because it includes the whole coconut including fiber, it is less likely to cause digestive issues.






P.S. Karen, all our best wishes for a speedy recovery to Jon.

 

[KarenB]

Karen, thanks for your reply. Here's an older study about pancreatic enzymes stating gram-negative bacteria are more susceptible than gram-positive. These results are also stated in newer papers. There's also discussion about inactivation of viruses:
that's fascinating about pancreatic enzymes having anti-bacterial effect
That's amazing you had his lipids tested shortly after illness. Maybe the levels are one thing, but the toxins attached to the fats is another.
He gets labs run every 3 months. But actually, I went back and checked the log. His first seizure was when he was still sick, but the labs were run the same day he had his 2nd seizure, which was 20 days later.That was the first time we saw the ketones lower than they should be (they were high when he had the first seizure), and they continued to be low until we started the pancreatic enzymes several days ago. So, no apparent effect of the illness on his triglycerides or cholesterol levels -- which were perfect. My theory is that his gut became inflamed due to the antibiotics or the illness. The inflammation or the infection caused high glucose levels and prevented adequate absorbtion of fats, which caused the low ketones. So...the enzymes caused ketones to increase because of enhanced fat absorbtion, but also, glucose now quite low -- indicating the inflammation or infection has subsided -- maybe the anti-bacterial effect, or perhaps also, he's absorbing his nutrients better (like vitamins -- his vit D levels low last month, even when on high supplement -- they didn't test his other vitamins, but I'll bet they were low to), so body better able to fight inflammation or infection

Is the probiotic you're using the single strain Culturelle? Did you ever find out which product you were using successfully two years ago? He gets Culturelle (Lactobacillus) most days, and gets a different one (a mixture of various probiotics) about 2 days a week -- just so he's getting a variety of beneficial bacteria. No, I don't know what he was getting in Thailand -- it was prescribed by his pediatrician, and dispensed by hospital -- all I remember is that it was refrigerated