Dietary changes and seizure control

[MichaelJO7]

Zoe,

I have Myotonic Muscular Dystrophy Type 2. I am too overwhelmed right now to elaborate further.

KarenB,

I am sorry about Jon.

 

[Bidwell]

Karen, Just to let you know that I have taken in your difficult news and am with you and Jon. I wish I were a neighbor so I could feed the family and hover around running errands.

 

[AlohaBird]

Yes, Karen our thoughts and prayers are with you and Jon and your family through this difficult time.

It doesn't sound like you are doing really well right now either, Michael. :hugs:

The worst thing I have to complain about today is that it's raining.

Check in when you can, both of you, and we understand if that's not all the time.

 

[Blonde Angel]

I agree with similar sentiments to what Aloha Bird has posted.

Take care of yourselves Michael and Karen in your tough times.
Karen you have a little man that depends on you but remember to look after yourself too.

 

[KarenB]

Thank you everyone. Jon is doing better. No more seizures since the one on Thursday. He's still ill and sleeping a lot, but is able to walk now, although he has a slight limp. He bit his tongue really bad, so painful to eat and drink. He pretty much just wants to hang out on the couch cuddling with me or his sister or his nurse or curled up on his Dad's lap. But he enjoyed a couple wheelchair rides around the neighborhood yesterday. He's watching his Mozart video now.

He had to go back on his tiny dose of 25 mg Zonegran temporarily. His neurologist thinks it was the perfect storm of the med wean and the illness. She said that the virus going around had caused seizures in a lot of other patients. Actually, the same thing happened in 2011, just 6 weeks after starting the Keto diet, following an ear and sinus infection -- only it was worse -- he went into status and had to be in ICU for 4 days. But then the seizures stopped, and he was seizure free for the next year and was weaned off the seizure meds.

So, I think we've figured out that the Ketogenic diet will keep Jon seizure free with little or no meds, as long as he's healthy -- it's when he gets sick that he gets thrown out of remission. Fortunately, that doesn't happen often.

 

[masterjen]

KarenB - glad to hear Jon is doing better.
To me, one seizure is too many. Since Jon is on the ketogenic diet and you feel he is doing fine on it as long as he is healthy, wouldn't it make sense to also keep him on this low dose of zonegran to cover him for those times he is unhealthy? You say he doesn't get thrown out of remission often, but wouldn't it be nice if the thought was "he never gets thrown out of remission". If a low dose of zonegran is what is being given now to keep seizures at bay, then maybe this low dose is what he needs all the time. As I say, even one seizure is too many. Often a child is "unhealthy" for a while before it becomes obvious. No parent wants their child to end up in ER or worse the ICU because of inadequate seizure control.

 

[KarenB]

Well, the reason for the med wean in the first place was the Zonegran side effects Jon was experiencing, which included chronic acidosis (which could lead to kidney disease and bone thinning, etc.), stunted growth, cognitive deficit, increase in aggression, agitation, stiff/spastic muscles, and poor eye contact (with both people and tasks that he needed to look at to achieve -- which would be most tasks). The side effects are fairly minimal at the lower dose (which he's been on since May as part of a very slow wean), but would that very small amount (25 mg), well below what's considered therapeutic dose, prevent seizures if he became ill again?

 

[Bidwell]

Well, it will take informed and shrewd thinking to plan for Jon's future -- both of which you have in abundance!
I am so impressed with the effects of the z on my eye sight. Even as an adult, it intruded very much -- VERY MUCH. Now that I have gone down a little -- just 50 ml over the last 5 weeks, I am noticing how much I am enjoying my sight. During the time I was taking Z I was frantic about my sight but I lacked conviction and so could not pin the deterioration of my sight on the drug. I brought drawings in to show the epileptologist how my style had changed [for the worse] with the introduction of the z, but she brushed the change off as irrelevant.
GOOD for you Karen, that you are on watch. GOOD for you!

 

[AlohaBird]

To me, one seizure is too many. No parent wants their child to end up in ER or worse the ICU because of inadequate seizure control.

If I were Karen, I would have a hard time not being offended by this. I admire her restraint.

 

[Zoe]

(quote)Yes Zoe,
I'm not disputing your statement... I've though about that many times and I'm not one to believe in coincidence..

What is the exact relationship between Autism and Epilepsy?.. How is their mechanisms elucidated?
Is science missing something still with the interactive aspects of 1. brain, 2. nutrition and digestion. 3. Immune system.??? (quote)
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Hi Angel,

If we don't agree on every point, it is just a difference in opinion, no one being necessarily right or wrong. We can both be right with different opinions too. All we have to work with is a set of information. If we are able to learn and grow we can easily change and expand our understanding when someone comes along (or we discover) information that challenges what we know at any given moment.

What some researchers and parents have seen over decades now, is that children being diagnosed with autism are sick and\or brain injured and not all for the same reasons. About a hundred years ago, a Russian doctor,named Metchnikov, suggested that children with bowel diseases were sick from bacterial problems in their intestines. When food is not well digested, what are now recognized as bad bacteria can build up in the intestines. These bacteria feed on the waste in the digestive tract. In their process of digestion the bacterial waste products form toxins which get absorbed into the bloodstream where they can cause illness throughout the digestive tract and the body.
Metchnikoff called the process "auto-intoxication. He advocated the use of fermented foods(Milk)to help break down and eliminate the harmful bacteria.
Mainstream medicine is still missing pieces of the jigsaw. His theory, was ignored or derided in the U.S. and elsewhere for this past century. Now, though there is a lot of research showing he was on the right track. Now it is typical for doctors to prescribe yogurt or probiotics to replace bad gut bacteria with good to heal digestive disorders.

http://www.gutpathogens.com/content/5/1/5


Before Probiotics Think Metchnikoff | NDNR
ndnr.com/gastrointestinal/before-probiotics-think-metchnikoff/
by E Metchnikoff - ‎Related articles
Dec 2, 2014 - Let me introduce you to Metchnikoff, a remarkable scholar and clinician not ... He developed the theory of intestinal auto-intoxication, which was ...
http://ndnr.com/gastrointestinal/before-probiotics-think-metchnikoff/

More slowly is a connection between children labeled with autism or epilepsy is coming to be recognized, further researched and addressed. A lot of research done in Italy was published in the peer reviewed journal "Lancet" in the 1990s showing a connection between gluten intolerance and celiac disease and neurological disorders including seizures and autism. It was often ignored or derided in the US. Around 2000, a study of what were called blood markers for celiac disease indicatede gluten intolerance, or the tendency to develop it, was fairly common in the US. That changed everything. Suddenly the gluten free connection was getting lots of attention and gluten free diet products became a major industry.

This theory, like others needs to be revised as new information is learned. There is much study now also showing that the way wheat is cooked may be the major reason for it not being properly digested and instead causing major illnesses due to Metchnikov's auto-intoxication.

Now there is quite a lot of research showing that if you, or your child is gluten intolerant, poorly digesting it can make you sick. Over time, you may develop intestinal disorders, brain lesions from the inflammation and disorders connected to the damaged areas. So if your child develops lesions in the brain from long term poor digestion of gluten products they might show up in the form of seizures and who knows what else. You can find plenty of people who are seeing themselves or their children improving or recovering using diet strategies like the Specific Carbohydrate, gluten\dairy-free or other diets.

There are many things that can cause the symptoms of seizures and others considered autistic. If you are seeing improvement but not recovery, there are more possibilities for you to explore.

----------------------------
(quote) You have personally noticed that avoiding wheat and dairy ( I think you avoid wheat ? .. Correct me if I Am wrong) you haven't had dramas with seizures... Well I've noticed reductions in Autistic symptoms & reduction but no elimination of the seizures for my girl.?(quote)
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Oh, I had some pretty intense “dramas” with my seizures. One was having a drop attack as I stepped into a busy intersection and coming to beneath a car that nearly killed me. There were many others. Seizure disorders often take a long time to develop. It may be useful to do a thread on this at some point. I found that it was necessary to literally retrain how my nervous system responded to the beginning symptoms of a seizure coming on, first by breath training and self hypnosis. It took about five years to become seizure free. I don't consider myself "cured" becuase my nervous system is severely damaged and it would take less stress to cause me to have a seizure than it might for others who never had neurological injury.

It is hard to imagine that anyone now would think that autism is a mental illness when so much information suggests otherwise. Also, there may be no single one cause, but multiple that are interrelated. That's one reason it is important to keep a journal or otherwise look for patterns in when, where, and what may have triggered a seizure. There may be many triggers, a bad night of sleep, a negative experience, a food or drug reaction, or just to much excitement.
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(quote) Something that's interesting is the role of zinc.
Imagine a stomach without zinc. No zinc no acid. No zinc , no mucous layer. We have the ironic situation that we need acid to digest food, but if we have too much acidity we don't feel well. Giving drugs to suppress stomach acid only hides the problem... And someone makes a lot of $$.
The anti microbial properties of zinc make it a " bowel bug policeman". What happens to the gut when zinc is low? We'd get inflammation and ulcers..
Guess what abnormalities is seen when Autism patients are endoscoped! (quote)
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Zinc is important and you may want to do some Google searching on zinc and seizures. It also is needed for the body to get and use vitamin A. In the liver zinc is a catalyst that enables the liver to release it's stored vitamin A into the blood stream. So what problems may arise in this regard if there is a zinc deficiency?

Zinc | Linus Pauling Institute | Oregon State University
lpi.oregonstate.edu/mic/minerals/zinc
Linus Pauling Institute
Jun 11, 2015 - Zinc deficiency is associated with decreased release of vitamin A from the liver, which may contribute to symptoms of night blindness that are ...
?Deficiency - ?The RDA - ?Disease Prevention - ?Disease Treatment
http://lpi.oregonstate.edu/mic/minerals/zinc


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(quote)
Just a mental illness ?
Hmmm there's more to it Zoe..
I'm no scientist, chemist or nutrionist, but I'm questioning medications and I want to try to understand those drug interactions and pay more attention to those side effects.
I've got a girl that needs me to do this.
I'm her advocate.(quote)
----------------------------------------
I am no scientist either, just do a lot of research on my own.
Search search and search for more information to advocate for your daughter.

If you haven't already, you may want to try searches like:

"name of medication" "nutrients depleted"

"name of medication" " cognitive impairment"

"name Of Medication" "homocysteine"

"homocysteine levels" "autism"

"homocysteine levels" "seizure threshold"

"name of medication" "side effects," "folic acid"

"name of medication" "side effects," "Kidney"

"name of medication" "long term side effects"

You will come up with many more possibilities that may help you understand how medications may help or harm your daughter.

********************************************

More links to explore:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137939/

Effects of vitamin B12 and folate deficiency on brain development in children

developmental disorders folate deficiency

A focus on homocysteine in autism
www.actabp.pl/pdf/2_2013/137.pdf

Acta Biochimica Polonica
by J Kaluzna-Czaplinska - ?Cited by 5 - ?Related articles
by the enzymes involved in homocysteine metabolism. Therefore, monitoring of ... of homocysteine in the body fluids of autistic children. Key words: autism ..... based on psychological tests and speech therapy were also analyzed. The studies ...

****************************************************


Vitamin supplementation reduces the level of homocysteine in the urine of autistic children.

Nutr Res. 2011 Apr;31(4):318-21. doi: 10.1016/j.nutres.2011.03.009.
Vitamin supplementation reduces the level of homocysteine in the urine of autistic children.
Kaluzna-Czaplinska J1, Michalska M, Rynkowski J.
Author information
Abstract
Significant differences in homocysteine levels in the urine of autistic children are observed. We hypothesized that vitamin supplementation might reduce the level of urinary homocysteine. To rationalize such a hypothesis, analyses were performed using the gas chromatography/mass spectrometry method. The homocysteine level in the urine of autistic children was measured twice: (1) before vitamin supplementation (group C, 30 autistic children) and (2) after supplementation, with either folic acid and vitamins B(6) and B(12) (group A1, 24 autistic children) or vitamins B(6) and B(12) alone (group A2, 6 autistic children). The homocysteine level in the urine of autistic children before vitamin supplementation was 2.41 ± 1.10 mmol/mol creatinine (mean ± SD difference). After treatment, the homocysteine level was reduced to 1.13 ± 0.44 and 1.33 ± 0.39 mmol/mol creatinine for A1 and A2 groups, respectively. The intake of vitamins B(6) and B(12), together with folic acid, was found to be more effective in lowering the levels of urinary homocysteine than the intake of vitamins B(6) and B(12) alone. Our findings may lead to the recommendation of including vitamins B(6) and B(12) together with folic acid supplementation in the diets of children with autism.
Copyright © 2011 Elsevier Inc. All rights reserved.


http://researchautism.net/publicati...omocysteine-in-the-urine-of-autistic-children.
http://www.ncbi.nlm.nih.gov/pubmed/21530806
--abstract
********************************************
Angel,
I am very impressed with Paul Whiteley and his research into autism whose link is below. Let me know what you think of him when you read his stuff.

Questioning Answers
questioning-answers.blogspot.com/
11 hours ago - A blog about research and investigations into autism spectrum and related conditions emphasising ... Posted by Paul Whiteley at 10:19 ...
?January - ?March - ?February - ?June
http://questioning-answers.blogspot.com/



Who's who at ESPA Research
www.espa-research.org.uk/who.html

Paul Whiteley has completed post-graduate research degrees on autism. His research interests include: examining the effectiveness of a gluten- and casein-free ..
http://www.espa-research.org.uk/who.html

 

[Zoe]

Karen,

Is Jon doing better today? Hope so!

 

[Zoe]

Well, the reason for the med wean in the first place was the Zonegran side effects Jon was experiencing, which included chronic acidosis (which could lead to kidney disease and bone thinning, etc.), stunted growth, cognitive deficit, increase in aggression, agitation, stiff/spastic muscles, and poor eye contact (with both people and tasks that he needed to look at to achieve -- which would be most tasks). The side effects are fairly minimal at the lower dose (which he's been on since May as part of a very slow wean), but would that very small amount (25 mg), well below what's considered therapeutic dose, prevent seizures if he became ill again?

I read Bill Moyers’ interview with Robert Ader in the 1990s in “Healing and the Mind.” Ader describes how he was able to condition the immune system in rats to react to placebo as if it were the actual drug. By giving the rats the drug in a sweet liquid they were conditioned to associate the sweet drink with the drug. Ader began giving less drug with the sweet drink, slowly reducing the amount of drug. In this way the rats were conditioned to keep reacting to the drink as if it contained the full amount of the drug. That interview is now on Google Books. https://books.google.com/books?id=G...logy Bill Moyers Healing and the Mind&f=false


They talk of how humans might be conditioned to react to smaller and smaller amounts of a drug as if getting the full dose. I used this approach to withdraw from Klonopin to which I was addicted. Just shaved of a very small amount of a pill, like 10%, gave my body a chance to adapt, then reduced by a very small amount again. It took much longer to withdraw, but with no serious side effects.

 

[masterjen]

Well, the reason for the med wean in the first place was the Zonegran side effects Jon was experiencing, which included chronic acidosis (which could lead to kidney disease and bone thinning, etc.), stunted growth, cognitive deficit, increase in aggression, agitation, stiff/spastic muscles, and poor eye contact (with both people and tasks that he needed to look at to achieve -- which would be most tasks). The side effects are fairly minimal at the lower dose (which he's been on since May as part of a very slow wean), but would that very small amount (25 mg), well below what's considered therapeutic dose, prevent seizures if he became ill again?

Is Zonegran the only medication that he can take? It does sound like a lot of side effects for a little guy to have to deal with. There must be something out there that has fewer side effects and that could help protect him should he become ill and even more prone than usual to seizures. What AEDs has he been on so far that he has been unable to tolerate?

 

[Blonde Angel]

Hi Zoe
It's amazing that this Russian Dr Metchinikov was researching the gut stuff all those years ago and set some future precedents.
It's been a journey for me in the sense I've had to open my eyes beyond conventional medicine and look into the biomedical research, treatments of Autism and Epilepsy. The onus is on my self too KEEP looking at the latest developments with dairy/gluten/casein free diets, heavy metal detoxification, & nutrient therapies.

Just like a researcher, I have to record everything about what happens to my girl in EVERY aspect, be it nutient regime changes, behaviour, illness, sleep deprivation, stressors etc& continually review if something is clearly not working. I keep a journal its my " bible" it helps me look at the puzzle by investigating any patterns that may exist. It's sort of like being a detective on a murder case, there's no easy answers at time and there just might be done thing so simple like my girl raiding the fridge and eating the cheese that's not " lactose free" and there's evidence of some regression.

I try to keep in touch not just through googling stuff, but if I hear any local presentations . There a nutritionist by the name of Blake Graham and he is a passionate specialist in the fields of science based nutritional abd environmental medicine. Qualifications is Ba of Science with Honours in Nutrition. His special interests include Chronic Fatigue, Fibromyalgia, Irritable Bowel, Autism/ ADHD and mental health issues like anxiety and depression. He does not look at Epilepsy but hey Im hungry for ongoing information.

Thank you for your experiences, Google suggestions with key words and the suggestions that encourage to keep researching.
The onus is on the individual to keep questioning and researching the possible links, and bring aware that we all react to drugs in different ways, and the majority don't consider the actual drug interactions on a holistic manner.

I will check out those links about Paul Whiteley and give you more feedback later.

 

[Blonde Angel]

In saying all this.
My Daughter is on Trileptal, this so far has been somewhat the " kindest" drug as in side effects and general management. She is on a minimal dose.
I carry midazolam in my handbag, if her seizures go beyond 5 mins..
Fortunately she has not required it.
Whilst I'm eagerly undertaking nutritional, biomedical management for some years now, it's supported by Dr Tabrizian who has recognised qualifications . I've also utilised the dietician for specific food strategies.
There's no compromising of safety for my girl.
For those who are parents, who some have been absolutely sick and tired by the crap of some medications side effects on their child. I had a child who was hallucinating at night and crying / screaming in the early morning while she was on Tegretol and an absolute zombie in the day.
I never want to go through that again.
I'm seeing differences that's a .. Positive, that's what matters .

 

[KarenB]

Is Zonegran the only medication that he can take? It does sound like a lot of side effects for a little guy to have to deal with. There must be something out there that has fewer side effects and that could help protect him should he become ill and even more prone than usual to seizures. What AEDs has he been on so far that he has been unable to tolerate?

1) Keppra - didn't work. Increased seizures. Caused Kepprage, hyperactivity, depression, self-harming, etc.
2) Topamax - worked for 3 years, then stopped working. At higher dose, caused aggression, loss of spoken language. He went from speaking in sentences to speaking only about 10 words when on this med.
3) Trileptal - didn't work. Increased seizures. Caused bipolar-like symptoms, extreme hyperactivity, extreme aggression, extreme agitation, etc.
4) Lamictal - allergic reaction (rash and vomiting)
5) Depakote - didn't work. Caused liver damage, hand tremors, cognitive deficit, basically turned him into a zombie
6) Clonazepam - (rescue med) didn't work
7) Ativan (given by IV in hospital) didn't work
8) Diazepam - didn't work. Increased seizures. Caused aggression, hyperactivity, etc.

 

[KarenB]

Karen,

Is Jon doing better today? Hope so!

Yes, thank you. He's doing well. He went on a short walk, up to the end of the block, and wanted to keep going. So, he seems to have his gross motor skills back.

 

[masterjen]

1) Keppra - didn't work. Increased seizures. Caused Kepprage, hyperactivity, depression, self-harming, etc.
2) Topamax - worked for 3 years, then stopped working. At higher dose, caused aggression, loss of spoken language. He went from speaking in sentences to speaking only about 10 words when on this med.
3) Trileptal - didn't work. Increased seizures. Caused bipolar-like symptoms, extreme hyperactivity, extreme aggression, extreme agitation, etc.
4) Lamictal - allergic reaction (rash and vomiting)
5) Depakote - didn't work. Caused liver damage, hand tremors, cognitive deficit, basically turned him into a zombie
6) Clonazepam - (rescue med) didn't work
7) Ativan (given by IV in hospital) didn't work
8) Diazepam - didn't work. Increased seizures. Caused aggression, hyperactivity, etc.

Wow, he has been through the so many!! I have a similar list of medications not working (I've tried 7). Now on Fycompa, a drug that works on entirely different brain receptors than the others, and for me it is a medication that is finally making a difference. It can be effective at fairly low doses for some people, and is approved for partial and TC seizures on those 12 and older. Just thought I'd pass this along in case you hadn't heard of this one.

 

[KarenB]

He wouldn't be quite old enough for Fycompa yet. Fycompa is known for neuropsychiatric events -- which a number of other meds have already triggered in Jon. Zonegran is a known evil that actually works to stop his tonic-clonic seizures. Not too keen to switch to another drug that may work but probably wouldn't (considering the 80% fail rate of all the drugs he's tried so far).

I think for now, we'll stick with the Keto diet and the 25 mg of Zonegran and see how that goes.

 

[Bidwell]

I have been hopefully wondering about the likelihood that the conditions causing the seizures could possibly work themselves out as the physiological complexities take place during Jon's maturation process. Do experts hopefully wonder about this?