Dietary changes and seizure control

[KarenB]

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.

If it's a genetic mutation, then what is causing the mutation? We haven't experienced such a dramatic increase in other diseases caused by mutations.

I suspect something environmental. Like wheat (and other foods) that is treated by pesticides and genetically engineered (could it be that normally developing babies suddenly take that downturn around age 1 when they start eating more table food?) Could that be causing the gut inflammation that many kids with ASD are afflicted with?

Or the vaccines. Perhaps not one specific vaccine, but the cumulative effect of the 50 or so that children are now required to get before they are age 6. When my older children (born in late 80's and early 90's) were little, they only got maybe 10 or so jabs. Their little brother is required to have 5 times that many. It was after his Dtap vaccine when he was 6, that Jonathan had a sudden surge in seizures -- from 5 the previous year, to several a week, and a lot of regression. Once again, the issue of inflammation.

 

[AlohaBird]

Dr Perlmutter was asked to take a stand on the always controversial topic of vaccines and I think he found a very good middle ground that ties into what Karen just said.
He said that there is no question that vaccines work and supports continuing to vaccinate children. On the other hand though he says that, for reasons of convenience , children are often given a huge laundry list of vaccines all at once. This is more than a developing immune system is ready to handle all at once. He recommends spacing the vaccines out over time. I think this makes sense.

About gut inflammation (and autism) suddenly starting to take hold at the same age where children are being weaned off the world's best ketogenic diet (breast milk) and onto gluten and Roundup laden foods. I think it is pretty obvious that there is a connection there.

 

[AlohaBird]

For instance, the Ketogenic Diet for Seizures has been studied for many years, and has a documented success rate that is unparalleled by any seizure medication on the market today. And what makes that especially remarkable is that the studies are conducted on children (and now adults) who had very severe seizures that did not respond to medications. So, if the Keto diet can work so well with the worse-case scenarios, then the chances it can work for people with milder forms of epilepsy are probably even better. And, in these cases, the very strict Johns Hopkins protocol may not even be necessary.

Karen said this a couple of pages back and I think it bears repeating.

 

[Blonde Angel]

In Oz it's 1:100 kids being diagnosed with ASD.
I have my own theory in that there's a genetic predisposition a frailty that exists in the first place that seems to be triggered by environmental factors like nutrition and the enormous doses of vaccines that little babies immune systems can't handle in one hit.

If you think about some thing like breast cancer , latest research is suggesting some genetics involved in incidences, if there's familial members with breast cancer one is more likely to be at greater risk of developing breast cancer than one with no familial history.
Research is being done on cytogenics stuff with some families who have a child ( or those unfortunate to have more than 1 child with Autism). These seems to be some blood work duplications evident in 1 parent noted. It doesn't necessarily mean 1 parent has Autism but there's some anomalies in the FISH studies on microarray testing.

All early days still.
But I hope there's answers in my lifetime ..as Jay and Karen B hope.

Because Epilepsy and Disability that includes Autism, CP, Downs etc is bloody hard work.
And it's something you certainly don't expect when one decides to have kids.

 

[Blonde Angel]

Karen B
I've read your public profile and I'm interested in your son's negative reaction to Trileptal in that it began the Autism symptoms . It would of been an awful time for you all to have experienced that.
My Daughter is on Trileptal and it seems to be okay for for her, ..she is on a minimal dose ( I get reminded this by the paediatric neuro) but I don't see no need to increase a dose if there's no increase in seizures ...I actually found Tegretol, Clonidine and Keppra awful awful awful. It made her go nuts and she regressed in her behaviours, caused increased seizures, and she seemed to have hallucinations at night. It made our lives quite miserable.

 

[Jay1]

10 Proven Health Benefits of Coconut Oil

http://authoritynutrition.com/top-10-evidence-based-health-benefits-of-coconut-oil/



23 Benefits of Coconut Oil & Why It’s So Darn Good for You

http://bembu.com/coconut-oil-benefits


Medium-chain Triglyceride Ketogenic Diet, An Effective Treatment for Drug-resistant Epilepsy and A Comparison with Other Ketogenic Diets

http://biomedj.org/article.asp?issn=2319-4170;year=2013;volume=36;issue=1;spage=9;epage=15;aulast=Liu

 

[Jay1]

My diet that works for me:

1. Oatmeal with soy milk and blueberries.
2. Tomato sandwich with very little Mayo.
3. Salad of any kind.
4. Salmon
5. small potato, no rice.

I am not recommending this diet for anyone else. It works for me. I left a lot of foods I can and cAnnot eat.

We all have different allergies to different foods and drinks.

This is excellent food choice.

Blueberries = lots of antioxidants to reduce inflammation of brain

Tomato = lots of phytonutrients for preventing disease and keep your body working properly
Phyto = fight
http://www.phytochemicals.info/plants/tomato.php


Salad = Veggies will usually have high amounts of antioxidants and phytochemicals


Salmon = Lot of Omega-3 to reduce inflammation of brain


I am not very sure about soy milk as most of soy is GMO and can cause inflammation of brain.


Explore the possibilities of adding one avocado and goat milk in your diet.

 

[Ruth]

I am not very sure about soy milk as most of soy is GMO and can cause inflammation of brain.


Explore the possibilities of adding one avocado and goat milk in your diet.

I love avocados and eat them when they are available.

I don't like the taste of goat milk.

Our whole family drinks soy milk. We like it. It is better than cow's milk for me. I have Diabetes Type 2.

Thank you for the suggestions!! :cheers:

 

[KarenB]

In Oz it's 1:100 kids being diagnosed with ASD.

That's not a happy number, but it's better than the U.S.

Made me curious, so I looked up the vaccine schedule for Aussie tots. They get about 10 fewer vaccines by age 6.

They get 4 DTPa shots by age 6 compared to 5 DTaP shots for U.S. kids. Interesting thing...the MMR shot gets a lot of bad press, but the DTaP shots are the ones that cause the most problems (severe enough for the govt to award vaccine injury compensation).

 

[KarenB]

Karen B
I've read your public profile and I'm interested in your son's negative reaction to Trileptal in that it began the Autism symptoms . It would of been an awful time for you all to have experienced that.
My Daughter is on Trileptal and it seems to be okay for for her, ..she is on a minimal dose ( I get reminded this by the paediatric neuro) but I don't see no need to increase a dose if there's no increase in seizures ...I actually found Tegretol, Clonidine and Keppra awful awful awful. It made her go nuts and she regressed in her behaviours, caused increased seizures, and she seemed to have hallucinations at night. It made our lives quite miserable.

Two of Jon's neurologists told us that some of the AEDs that are also used to treat psychological illnesses (like bipolar, schizophrenia, etc.) can have a paradoxical effect, especially in children. They can actually cause symptoms of psychosis in children who were previously normal psychologically. Some meds that would fall into this class are Trileptal and the benzodiazapines such as Clonidine or Diazepam. Keppra is just a nasty drug for a lot of people -- it's not as hard on the body organs like kidney and liver as many AEDs, but it just provokes lots of bad psychological reactions (depression, irritability) in many patients. Meds for Jon that triggered aggression, agitation and autistic symptoms like lots of stemming and repetitive vocalizations were Topomax (at high dose, not low), Trileptal, Diazepam, Keppra and Zonegran. He's almost off the Zonegran, and has been improving since it's been reduced (although every time we do a taper, he gets unstable again).

The series of events with Jon and Trileptal:
1) Good seizure control on low dose of Topomax from age 2 to age 5. No autistic symptoms such as stemming, hand flapping, aggression, regression, etc. Got along well with classmates, very social, good eye contact.
2) Age 5 had 3 break-through seizures, and Topomax was increased from 100 to 200 mg/day. The higher dose of Topamax caused expressive language issues -- his spoken vocabulary reduced by about 50%.
3) Age 6, got DTaP shot, and immediately started having several seizures a week (compared to several a year). Mild aggression began at this point. Also, loud repetitive vocalizations.
4) Age 6 1/2 - switched from Topamax to Trileptal, and all Hell broke loose. Lost almost all of his spoken language to only about 10 words (from speaking in sentences previously and in two languages). Became extremely aggressive -- almost was kicked out of school -- kicking, biting, hitting. Was like a raving lunatic -- snarling and grunting -- the aide at his school thought he was demon possessed. He started a lot of stemming at that point. Would get highly overstimulated by bright lights -- Walmart would set him off!

When he was taken off the Trileptal, the aggression decreased by about 90%. (But then got worse again down the road when on the Diazepam, Keppra and Zonegran). He never stopped the stemming and hand flapping and grunts that started up at age 6, and he's never regained his spoken language. He was formally diagnosed with autism at age 10, but he basically had it since age 6. NOT before, at least not obviously. I think it was caused by either the AEDs or the seizures or the DTaP vaccine (or maybe all 3 working together in an unholy trinity).

 

[KarenB]

I don't like the taste of goat milk.

Our whole family drinks soy milk. We like it. It is better than cow's milk for me. I have Diabetes Type 2.

:cheers:

Have you tried almond milk? It's high in calcium, and very low in carbs and calories and also anti-inflammatory -- good for diabetics (be sure to get the unsweetened kind). Almonds are also a prebiotic -- good for cultivating healthy gut bacteria.

I get the vanilla flavored and love it in my coffee.

 

[KarenB]

Vitamin C in seizure treatment

1) Diminishes oxidative stress in brain
2) Easily transported through blood-brain barrier
3) Reduces injury in the hippocampus during seizure
4) Inhibitory activity
5) Decreases mortality
6) Neuroprotective

http://www.ncbi.nlm.nih.gov/pubmed/24948051
http://www.ncbi.nlm.nih.gov/pubmed/23994218

Vitamin C levels which are low (but not low enough to show clinical signs -- i.e. in people who don't eat enough of the right veggies/fruit) leads to increased risk of epilepsy and seizures (in studies on mouse models) http://www.ncbi.nlm.nih.gov/pubmed/25616451

 

[Blonde Angel]

Hi KarenB
Yes those immunizations , the MMR has caused quite a lot of controversy.
I recall when my girl had her MMR at 12months she developed a fever a few days later. I did not think much of it at the time but now that I think back it did begin the "trigger" of autism symptoms like nil eye contact, that vacant expression.
I am not jumping on the bandwagon to say immunizations is evil stuff but to me I do not believe in coincidence, because before that she did provide eye contact to others. Generally she was an unsettled baby and one neurologist that I saw stated that kids with Autism do have a history of not breast feeding well... and yes she never breast fed well. But I do recall being a stressed first time sleep deprived mum... which did not help in having sufficient breast milk.
When I think of my twin boys, they fed and slept well, no scientific basis but its my experience.
A parent just knows when something's not quite right with their kid.. not a great feeling as you would know.
Thanks for your feedback about Jon's experience on Trileptal, it certainly did not benefit him.. and you as his mum knew you had to act on that issue.

It certainly is a paradox some of those anti seizure meds , its a pity I did not know that at the beginning. I have to be quite pushy in knowing what exact side effects to expect and med interactions. Trileptal seems to be working (getting about 1 seizure/month) unless there's extra stress and illness... the drama I have is it interferes with the Pill and mini pill .. getting breakthrough bleeding instead of 3 monthly... will eventually look at mariner but she needs to be an adult.

 

[KarenB]

Multi-vitamins recommended for all patients on AEDs

Long term use of Anti-epileptic meds lead to serious health issues & can increase seizures

1) Most AEDs reduce folic acid levels, thereby raising Hcy (Homocysteine) levels.
2) Raised Hcy levels place the patient at risk for cardiovascular disease, clogged arteries, stroke, peripheral vascular disease, dementia, and bone fractures
3) Elevated Hcy levels also cause oxidative stress and excitatory neurotoxic molecular mechanisms, causing convulsions, increased seizure recurrence and intractability to antiepileptic medications
4) HCY levels can be reduced by folate and vitamin B6 and B12 supplementation.
5) AEDs can disturb lipid metabolism and alter uric acid metabolism which can lead to cell damage

A convincing argument now develops that routine polyvitamin supplementation (folic acid, vitamin B12, vitamin B6, vitamin C, vitamin E, and beta-carotene) becomes increasingly important for women and men receiving AEDs at all ages. The atheroprotective effect of multivitamins is through their antioxidant and anti-inflammatory effects together with their lipid and Hcy lowering effects.

http://www.ncbi.nlm.nih.gov/pubmed/16079465
http://usa.healthcare.siemens.com/c...ory-expert/education/content/homocysteine-hcy
http://www.ncbi.nlm.nih.gov/pubmed/22425007

 

[Bidwell]

I just want to mention that I had a VEEG last week during which it was decided I do not have seizures and do not need zonisimide, but when I left the hospital I encountered such unintended sadism on the part of the healthcare system, which had, among other things, deleted the existence of my base epileptologist, that I had a lengthy rage reaction/seizure? with blood pressure spike that I terrified/terrifies me. I am lucky to be alive. The doctors in the USA system are compromised to the point of being brain dead, as far as I can tell, and urge me to stay on the z until I can see a neurologist [in weeks? months? and what kind of ignoramus will I get?] and I am terrified. I know damned well and have known all along that the z is contributing to my many symptoms but I have deferred to authority again and again and have addled myself. I DO have some ideas about getting back to the epileptologist at the Regional Epilepsy Center where the VEEG took place to get a stable plan. I will do that today and will post what happens. SO your posts are important for me for many reasons.Right now I want to say that the specific information is important and your conclusions, Karen, because time and again you bring me to my senses which are frequently drowned out by my personal waffling about the authority of doctors. I would not have believed this about myself even six months ago, but it is true. I could spit. Thanks.

 

[Bernard]

I just want to mention that I had a VEEG last week during which it was decided I do not have seizures ....

A vEEG records activity for a short period of time (even if it is 24/48/72 hours). If you have a seizure event during the recording period, it can be a valuable diagnostic tool. However, I have never heard anyone ever claim it could "prove a negative".. Ie. if it doesn't happen to record a seizure event, that doesn't prove that seizure events don't occur outside of the recording period.

 

[KarenB]

I absolutely concur with Bernard about the EEG. It does NOT prove one doesn't have epilepsy. Jonathan has had multiple EEGs that didn't show anything, including one 48 hr video EEG (and then 6 months later he was in ICU with status epilepticus).

I also still highly value Jon's docs, but rather than passively nodding my head and taking what they prescribe, it's more of a partnership, where I am much more proactive, and dietary interventions (including supplements) play the primary role in his treatment. It does take some careful research to get the right docs.

Now, as to Zonisamide (Zonegran) -- this is what Jon has been on for about 3 years now, but almost weaned off. This drug is associated with adverse psychotropic effects including irritability, rage, aggression, and even mania and psychosis. It certainly has caused adverse psychiatric effects for Jon that are fading as we taper down (although with every taper, we get some instability for a couple weeks).

Bidwell, it may be that your episode at the hospital wasn't actually a seizure, but an event brought on by the Zonegran (triggered by incompetent staff).

http://www.ncbi.nlm.nih.gov/pubmed/24070880

 

[Bidwell]

I am in complete agreement with you. Right now the issue is to get off the Zonisamide. I think it IS triggering the rage reactions and I think it is very dangerous whether I have seizures or not since it would not be implausible for me to have a stroke.I have been doing the Perlmutter regime and the coconut oil for a number of months and I think those must have been having a salutary effect somewhat As a temporary fix, I am going to get an appointment with the Epileptologist at the VEEG place. In the long term I don't know. Thank you for your clarity, attention and all the work you have done.

 

[Cint]

I absolutely concur with Bernard about the EEG. It does NOT prove one doesn't have epilepsy.

:agree:

Now, as to Zonisamide (Zonegran) -- this is what Jon has been on for about 3 years now, but almost weaned off. This drug is associated with adverse psychotropic effects including irritability, rage, aggression, and even mania and psychosis. It certainly has caused adverse psychiatric effects for Jon that are fading as we taper down (although with every taper, we get some instability for a couple weeks).

Several of the AEDs are known to cause rage, aggression, mania, psychosis as is this damned brain disorder itself.

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced
Psychosis encompasses a broad behavioral spectrum, including impaired content and coherence of thought, reduced connection to reality, hallucinations, delusions, disorganized speech and behavior, and extremes of affect and motivation. The diagnosis of psychosis can be difficult, as many patients willfully hide their signs and symptoms such as delusional beliefs, and others are “quietly psychotic,” showing only quirky mannerisms. Psychotic symptoms may be categorized as positive and negative.
Positive symptoms include tangential, incoherent speech and thought, hallucinations, delusions, and aggression, as well as exaggerated, bizarre, or disorganized behaviors.
Negative symptoms include poverty of speech or speech content, flattened affect, social withdrawal, anhedonia,apathy and impaired attention and self-monitoring.

And anytime one tapers off one drug or starts another AED, there will be some instability during those few weeks, sometimes months.
Keppra is known for rage. Once my dr. (epileptologist) had me on a trial drug at the time, Sabril, and it made me actually psychotic. I had to be taken off that drug right away. Another drug, Potiga, was making me more irritable and I was taken off that, too because of it. I've never taken Zonegran, but it is listed as one drug that can cause psychotic behavior.

http://www.epilepsy.com/learn/impact/moods-and-behavior/medications-and-mood

Certain categories of changes were more common for certain medicines:

Psychotic behavior: Sabril, Zonegran, Potiga, Fycompa

 

[Bidwell]

Cint, Thanks for all that. I want to say that the epileptologist at the VEEG was using data separate from the VEEG to come to the conclusion that I do not have seizures. I am at least 75% in agreement w the idea that I do not have epilepsy. I have many reasons to think so. My experience of myself is now so bizarre and I feel so drugged that I have to believe the zonegran is my problem. I am cautiously eliminating the z.