Autism & Epilepsy & General Epilepsy Experiences

[Zoe]

Hi Angel,

Thanks for the update. There's been a lot of good research on taurine. That amino acid pretty much put an end to my partial seizures. Hope your daughter continues to improve!

 

[Blonde Angel]

Hey Zoe
yes there has been benefits with the Taurine.

Just one thing to add, as a general warning is the fact that most energy drinks do contain high levels of caffeine, herbal stimulants and taurine.

Not that my girl or I touch energy drinks, but the stuff can be a downer for blood pressure and cardiac function.

 

[Zoe]

Why would there be taurine in energy drinks? I stay clear of them too-I'd like to stay seizure free!

 

[Blonde Angel]

Yeah
its used in sports supplements it appears that results of some studies into taurine usage have shown that taurine is involved in reducing muscle fatigue.

*protein supplements
*creatine formulas
*stimulant drinks

 

[epileric]

It's great that taurine helps some people but like I've mentioned on another thread, medical sources do ask that you be careful as it can have an effect when taken in conjunction with AED's.

Some supplements may make certain antiseizure medications less effective. Ask your doctor before taking any herbs or supplements.

Taurine is an amino acid that may be involved in the brain's electrical activity and is often low in people with seizures. It acts like GABA (gamma aminobutyric acid, 500 mg, 2 times per day), another amino acid that is often low in people with seizures. But there is no scientific evidence that taking either supplement will reduce seizures. Taurine may interact with many medications. Do not take taurine of GABA supplements without your doctor's supervision. Do not take taurine or GABA if you have a history of bipolar disorder, or if you take psychoactive medications.

http://umm.edu/health/medical/altmed/condition/seizure-disorders

 

[Blonde Angel]

Thank you for the information Epileric.

Yes, I have been warned about Taurine.

With anything, it involves close consultation with relevant professionals and guidance with dosages. Its important for individuals to be aware of not only the possible positives but also possible negatives for some individuals.

That is why I refrain in posting actual dosages of what supplements my girl is on.
I'm also very mindful of interactions and contraindications.

 

[Blonde Angel]

I do try to document everything and put dates in when changes are made with either foods provided, nutrients and supplements. I have not noticed any increase in seizure activity, in fact its has reduced.

A good thing me thinks.

 

[gymrat827]

bad nights sleeping are the primary driver for me. I am an insomniac and have been since i was about 21/22.

seizures started at 25. bi polar about 20.

Blonde A, i just got back from a 8 day stay at the mayo clinic, fire away with ?'s if you would like.

I am about 32 (5wks away) so i know i am a bit different from your situation, but for me, Mayo was a huge learning experience. I didnt come away with any direct improvement, but a ton of knowledge.

 

[Andrew]

Biosynthesis

Taurine is a derived from cysteine, the amino acid that contains a thiol group. Mammalian taurine synthesis occurs in the pancreas via the cysteine sulfinic acid pathway. In this pathway, the thiol group of cysteine is first oxidized to cysteine sulfinic acid by the enzyme cysteine dioxygenase. Cysteine sulfinic acid, in turn, is decarboxylated by sulfinoalanine decarboxylase to form hypotaurine. Hypotaurine is enzymatically oxidized to yield taurine by hypotaurine dehydrogenase

https://en.wikipedia.org/wiki/Taurine

sulfinoalanine decarboxylase:

This enzyme participates in taurine and hypotaurine metabolism. It employs one cofactor, pyridoxal phosphate.

https://en.wikipedia.org/wiki/Sulfinoalanine_decarboxylase

Organic cofactors are often vitamins or are made from vitamins.

https://en.wikipedia.org/wiki/Cofactor_(biochemistry)

Megavitamin therapy is typically used in alternative medicine by practitioners who call their approach "orthomolecular medicine", but also used in mainstream medicine for "exceedingly rare" genetic conditions that respond to megadoses of vitamins.

https://en.wikipedia.org/wiki/Megavitamin_therapy

**DO NOT ALTER ANY MEDICATION WITHOUT YOPUR DOCTOR'S CONSENT**

 

[Blonde Angel]

bad nights sleeping are the primary driver for me. I am an insomniac and have been since i was about 21/22.

seizures started at 25. bi polar about 20.

Blonde A, i just got back from a 8 day stay at the mayo clinic, fire away with ?'s if you would like.

I am about 32 (5wks away) so i know i am a bit different from your situation, but for me, Mayo was a huge learning experience. I didnt come away with any direct improvement, but a ton of knowledge.

So how did things go gymrat at the mayo clinic?

 

[Blonde Angel]

https://en.wikipedia.org/wiki/Taurine

sulfinoalanine decarboxylase:


https://en.wikipedia.org/wiki/Sulfinoalanine_decarboxylase


https://en.wikipedia.org/wiki/Cofactor_(biochemistry)


https://en.wikipedia.org/wiki/Megavitamin_therapy

**DO NOT ALTER ANY MEDICATION WITHOUT YOPUR DOCTOR'S CONSENT**

Yes Andrew
Diagnostic Orthomolecular Medicine (DOM) works by interconnecting the information from disparate scientific disciplines and explains the mechanisms that drive biochemistry from normal to abnormal .

 

[epileric]

Yes Andrew
Diagnostic Orthomolecular Medicine (DOM) works by interconnecting the information from disparate scientific disciplines and explains the mechanisms that drive biochemistry from normal to abnormal .

I don't think that's true, I'd be very cautious if trying it:

Orthomolecular therapies have been criticized as lacking a sufficient evidence base for clinical use: their scientific foundations are too weak, the studies that have been performed are too few and too open to interpretation, and reported positive findings in observational studies are contradicted by the results of more rigorous clinical trials.[52][58] Accordingly, "there is no evidence that orthomolecular medicine is effective". Proponents of orthomolecular medicine strongly dispute this statement by citing studies demonstrating the effectiveness of treatments involving vitamins, though this ignores the belief that a normal diet will provide adequate nutrients to avoid deficiencies, and that orthomolecular treatments are not actually related to vitamin deficiency.[10] The lack of scientifically rigorous testing of orthomolecular medicine has led to its practices being classed with other forms of alternative medicine and regarded as unscientific.[59][60][61] It has been described as food faddism and quackery, with critics arguing that it is based upon an "exaggerated belief in the effects of nutrition upon health and disease."[62][63][64] Orthomolecular practitioners will often use dubious diagnostic methods to define what substances are "correct"; one example is hair analysis, which produces spurious results when used in this fashion.[10]

https://en.wikipedia.org/wiki/Orthomolecular_medicine#Medical_and_scientific_reception

 

[Blonde Angel]

Hi Epileric
The DOM approach aims to analyse what process is pushing things out of range.

I see a Dr who completed medical school in the University of Western Australia in 1982 and worked in hospital medicine in Oz and abroad for 14 yrs before venturing into a combined private practice of general and anaesthetics. He has an interest in biochemistry and consequently his Nutritional Medicine practice is based on applied biochemistry.
HTMSA (Hair Tissue Mineral Analysis) was introduced over 50yrs ago, the test has continue to cause controversy. Perhaps the most annoying aspect (to medical drs who are used to controlling a patients investigations), is that the patients can order these on their own accord? The Dr I see was most sceptical on HTMA back in 1999, however, over time he has positive perspective of the place of HTMS in medical practice.

HTMA has been around for 50 plus yrs. If not useful, then why would we keep doing the test?
Medical Drs may be quick to discount anecdotal stories. Some love to quote the SINGLE (anecdotal ) study published by the JAMA (Journal of Medical Association) when the same hair sample was sent to like five different American labs(none of which had accreditation to perform such tests by the way) and of course the results were different!

Over the yrs, the Dr I see for my girl has seen several patients who )(by quirk of fate) had their blood samples (for electrolytes , cholesterol) analysed twice within minutes of each other by the same machine and guess what?? The results were different! Sometimes the difference was flagged as abnormal in one sample run, but normal in the other.

So
Id rather see someone that publishes books on the matter.

 

[epileric]

Hi Epileric
The DOM approach aims to analyse what process is pushing things out of range.

I don't understand what you're talking about (sorry). What process is pushing what our of range of what?

I see a Dr who completed medical school in the University of Western Australia in 1982 and worked in hospital medicine in Oz and abroad for 14 yrs before venturing into a combined private practice of general and anaesthetics. He has an interest in biochemistry and consequently his Nutritional Medicine practice is based on applied biochemistry.

Don’t you see Dr. Igor Tabrizian? I know you have an appreciation for him but I would be very scared to go to a doctor who was implicated in someones death because they didn’t provided proper medical treatment.

Cancer surgeon Cameron Platell told the coroner that even at this late stage she had "a good chance of survival" if she'd agreed to surgery, but she kept putting off an operation, trusting instead to Scrayen's homoeopathy and the "nutritional supplements" she was prescribed by a Dr Igor Tabrizian.

http://www.heraldsun.com.au/news/opinion/learn-from-this-tragedy/story-e6frfhqf-1225881062712

HTMSA (Hair Tissue Mineral Analysis) was introduced over 50yrs ago, the test has continue to cause controversy. Perhaps the most annoying aspect (to medical drs who are used to controlling a patients investigations), is that the patients can order these on their own accord? The Dr I see was most sceptical on HTMA back in 1999, however, over time he has positive perspective of the place of HTMS in medical practice.

I’m sure many people who use the test will use the claim that it’s not liked by doctors because patients can order it themselves but if you seriously check it out, you’ll see that they probably don’t like it because its’ not been shown to be accurate.

Proponents claim that hair analysis is useful for evaluating a person's general state of nutrition and health and is valuable in detecting predisposition to disease. They also claim that hair analysis enables a doctor to determine if mineral deficiency, mineral imbalance, or heavy metal pollutants in the body may be the cause of a patient's symptoms. These claims are false.

• Hair analysis is not reliable for evaluating the nutritional status of individuals. In 1974, the AMA Committee on Cutaneous Health and Cosmetics noted: "The state of health of the body may be entirely unrelated to the physical and chemical condition of the hair . . . Although severe deficiency states of an essential element are often associated with low concentrations of the element in hair, there are no data that indicate that low concentrations of an element signify low tissue levels nor that high concentrations reflect high tissue stores. Therefore . . . hair metal levels would rarely help a physician select effective treatment." [3]

• Most commercial hair analysis laboratories have not validated their analytical techniques by checking them against standard reference materials. The techniques typically used to prepare samples for analysis can introduce errors for many of the elements being determined.

• Hair mineral content can be affected by exposure to various substances such as shampoos, bleaches and hair dyes. No analytic technique enables reliable determination of the source of specific levels of elements in hair as bodily or environmental.

• The level of certain minerals can be affected by the color, diameter and rate of growth of an individual's hair, the season of the year, the geographic location, and the age and gender of the individual.

• Normal ranges of hair minerals have not been defined.

• For most elements, no correlation has been established between hair level and other known indicators of nutrition status. It is possible for hair concentration of an element (zinc, for example) to be high even though deficiency exists in the body.

• Hair grows slowly (1 cm/month), so even hair closest to the scalp is several weeks old and thus may not reflect current body conditions for purposes of health diagnosis.

• The use of a single multielemental hair analysis test as the sole means of diagnosis violates basic tenets of medical practice that laboratory findings should be considered together with the patient's history and physical examination, and that the practitioner should keep in mind that laboratory errors occur.

http://www.quackwatch.com/01QuackeryRelatedTopics/hair.html

HTMA has been around for 50 plus yrs. If not useful, then why would we keep doing the test?
Medical Drs may be quick to discount anecdotal stories. Some love to quote the SINGLE (anecdotal ) study published by the JAMA (Journal of Medical Association) when the same hair sample was sent to like five different American labs(none of which had accreditation to perform such tests by the way) and of course the results were different!

It is a mistake to assume that because something has been around for a long time that it must be good. Remember bloodletting was done for thousands of years and we now know that it doesn't purge peoples humors.
Also, if there was a study done in JAMA, then it is not anecdotal.

Over the yrs, the Dr I see for my girl has seen several patients who )(by quirk of fate) had their blood samples (for electrolytes , cholesterol) analysed twice within minutes of each other by the same machine and guess what?? The results were different! Sometimes the difference was flagged as abnormal in one sample run, but normal in the other.

I’m sorry but I don’t understand how telling me about how 2 contradicting results taken within minutes can show any validity. I would tend to think that it shows how random & inaccurate the test is. I'd be curious how the doctor decided which result was "normal".

So
Id rather see someone that publishes books on the matter.

Don’t assume that writing a book automatically gives a persons’ claims validity. There have been books written on how the earth is flat yet I don’t think writing a book about it makes it true. http://www.theflatearthsociety.org/home/index.php/flat-earth-library/library-books For that matter, one of the main red flags that people use to identify quacks is when they take their claims to the media or book publisher rather than publishing it in a medical journal for peer review.

Personally, I'd be more concerned with his past of having let a cancer patient die from using an unproven treatment than impressed by the fact that he published a book instead of doing a controlled study.

Poor science led to Penelope Dingle's death from cancer

 

[Blonde Angel]

The lady in question (Penelope Dingle ) was what I would describe as quite extremist in her approach in treating her cancer. She was only keen to look at one strategy only.

I have seen Dr Tabrizian for a number of years now and I don't have any doubts in his experience and credibility.

 

[Blonde Angel]

Another thing Epileric.

No one can control an individual when it comes their decisions in their personal health, its up to the individual to research their choices.

So don't assume I'm blindly following just Dr Tabrizian as I also see a Paediatric Neuro, Developmental Paediatrician.
My own experiences with Dr Tabrizian has been only positive and I have never been coerced or forced to do something that may harm my child.

I am seeing differences for the better(less seizure activity, better diet, no irritated bowel, calm and alert) than having a child zombied on numerous meds and having issues with every aspect of quality of life.

 

[Bernard]

It's good to hear that you are seeing positive differences BA. I hope it continues.

My wife has seen a lot of doctors over the years. Some employed various techniques that quackwatch et. al. pan as ... substandard. In our personal experience, some of them definitely were inconclusive at best (and probably a waste of time and money). Some I think did actually offer positive results. Much like with medication roulette, you never really know what is going to happen until you try it. Balancing the cost(s) to potential reward is a calculation that will be different for every individual.

 

[Blonde Angel]

Bernard
my goal is assisting my girl in being healthy and happy, if I can do things that provide better quality of life for her, I am for it.
It still involves careful consideration of treatments available whether conservative and alternative components.
Thanking you for your input.

 

[Zoe]

Just a reminder folks,

There is no good reason to assume if your medical doctor tells you a drug is "safe and effective", it is. Not checking things out for ourselves can have tragic consequences.

https://helix.northwestern.edu/article/thalidomide-tragedy-lessons-drug-safety-and-regulation

It is dangerous to assume any mode of medical practice is safe for everyone. We are not clones and medical treatment needs to be tailored to individual needs, which conventional medicine is not.

We don't even know how many drugs being marketed in the US have actually been clinically tested and approved.

Unapproved Drugs: Drugs Marketed in the United States That Do Not ...
http://www.coping-with-epilepsy.com...-23950/www.fda.gov/Drugs/.../EnforcementActiv...
Food and Drug Administration
Sep 30, 2015 - Many drug firms do not update their drug listing information with ... Any unapproved prescription oral cough/cold/allergy drugs that are not ... Incomplete information was submitted to FDA's Drug Registration and Listing system ...
http://www.fda.gov/Drugs/GuidanceCo...rcementActionsonUnapprovedDrugs/ucm245106.htm


Nor can we assume a prescribed drug is safe for kids.

Information for Consumers (Drugs) > Drug Research and Children
http://www.coping-with-epilepsy.com...ces-23950/www.fda.gov/Drugs/.../ucm143565.htm
Food and Drug Administration
May 4, 2016 - Most drugs prescribed for children have not been tested in children. ... only about 20 percent of drugs approved by the FDA were labeled for ...
http://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm143565.htm


I have written about this before but a reminder is due. For years women were being told there was "no proof" that anticonvulsants can cause neural tube defects such as spina bifida. However, the reason there was no proof is because the studies showing this were biased. Women were excluded from the studies, so of course there was no proof. And how can anyone know if the drug one is taking for epilepsy was not proven "safe and effective," in studies that were biased as in those regarding birth defects? How many women with epilepsy ever got, or now get, this information from their anticonvulsant providers?

Using Current Evidence in Selecting Antiepileptic Drugs for Use ...
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by PB Pennell - ?2005 - ?Cited by 33 - ?Related articles
Prescription of antiepileptic drugs (AEDs) to women with epilepsy during the reproductive ... Pregnancy registries can be based on prospective or retrospective data. ... The relative risk (RR) for neural tube defects with VPA is remarkably high .... the National Institutes of Health, Specialized Center of Research P50 MH68036.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1176305/


Have all the males here who use anticonvulsants been advised of risks to their hormonal function?

Diminished libido and sexual dysfunction are unusually common among male epileptic patients. The most important etiologic factor may be antiepileptic drugs (AEDs)-induced androgen deficiency. We compared reproductive hormone levels among men with epilepsy taking various AEDs and normal controls.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829242/


There is no real or legitimate argument that one mode of treatment is the ONLY one that is valid. Doing that is confusing science with religion.

:soap:

 

[Blonde Angel]

Looking at being more efficient in promoting a good nights rest for my girl.

*create a calming bedtime routine

*exercise... she enjoys a gym she attends once a week(its a circuit for kids with special needs) and works out in our home gym, she is very good on the cross trainer..puts me to shame lol .She goes to walk the dogs with her carer three times weekly
*swimming once a week at the heated pool (loves this)

*Look at more foods that is magnesium and tryptophan rich and not to eat food at least 2 hrs pre bed time.