Beware of that shoulder you are leaning on....

[MonkeyBoy]

I would caution to many of you in here to step back and ponder the advice you get from the shoulder you may be leaning on. Not to say it is ill intended but may just be misguided or even dead wrong for you specifically. Try taking a little while to outline what it is you are suffering with, how it is being treated, how you feel, who is giving you advice, and is all this sustainable for you lifetime?

In the end you must take charge and be your own self no matter the treatment(s) you choose. People around you will come and they will go. By all means have relationships and share information but in the end always remember it is your life and you must make the decisions. I would also evaluate the age and experience of those you are getting advice from. What is their background? Where do they get their experience from? What are their motives and/or agendas? This forum is incredible and is full of some very helpful people - many have helped me in a short time but I evaluate each and everyone of them and go and research them and their advice. Does it make sense to me and is it something I want to tell my relative about that I am helping? Even in my situation it is his decision to take my advice or not. I do my best to not push it on him or be offended or upset if he does something else. In the end it is his body and life not mine.

Just throwing a few words out for you to ponder...... Thanks to those who have helped me!!! You know who you are.....

 

[Bernard]

This forum was not built for people to give medical advice. We do have a few members here that are doctors (they don't post very often), but most members are ordinary folks. Everyone has a story, personal experience and perspective to share. This sharing is wonderful and empowering, but all members here are ultimately responsible for themselves and should discuss their care with their physician.

 

[Screamy]

Thank you for posting this Bernard.... and if MonkeyBoy did not post this, alot of CWE'rs would not think about this... Thank you again Bernard!!

 

[MonkeyBoy]

Bernard - I hope I am not in trouble? I was not trying to cause any issues but trying to help point something out as I saw it. Sorry if I did..... I love the forum and thank you for the incredible work you have managed to do here by assembling this many people with seizures in one spot! Thanks!!!

 

[julie wishes]

If I'm reading monkeyboy's post right, I think he brings up a good point based off of a concept called "informed consent". I am an RN, and informed consent was a big part of my everyday life at work.

Informed consent means that the doctor has informed the patient about the good, bad, and unknown aspects of seizures, all treatments available, and pronoses. Only then can the patient chose the option best for them. This is proper care.

I have read post after post here at CWE with members stating they were not told about alternative treatments, special diets, side effects of medications, etc. This is not proper care.

Another point that I think monkeyboy is making is to be leary of the BIG business practices of pharmaceutical companies and insurance companies. They can and have influenced the FDA and MDs to promote their products. Its hard to know, but we all have to assume a product is safe, then 5 years later you hear they have pulled it off the market. There are so many great necessary medicines available. An undisputable fact. But that doesn't mean that we shouldn't be stewards in our own life and research the things that are prescribed for us.

Monkeyboy, I hope I have not misspoken.

Bernard, I love CWE. It is a wonderful place of sharing and caring for those in need. It has changed my lilfe.

 

[Silat]

I have read post after post here at CWE with members stating they were not told about alternative treatments, special diets, side effects of medications, etc. This is not proper care.

They're not told about them because there's no real established studies about those diets that prove or disprove them. Since there's no established proof of them being effective, they're not included in standard care.
Hence the term "Alternative Treatment".

Side effects I agree on, however it should also be noted that the side effects are listed with each perscription one picks up, and pharmacists are supposed to ask if the patient has any questions when they pick up the medication. There's ample opportunity for the patient to ask the pharmacists when they pick up the medication, and if the patient were to read the information that comes with it, it has all the side effects listed.

Realistically, it would be impossible for a doctor to know every side effect of every medication and tell every patient about them at every appointment... That's why there's other ways of getting that information during the process before you actually take the pill. However most people don't utilize those routes and simply take the medicine.

Not saying you're wrong... I'm just saying there's a reason behind everything.

 

[julie wishes]

Realistically, it would be impossible for a doctor to know every side effect of every medication and tell every patient about them at every appointment...

This is a very wrong statement. Its their job to inform you and its their license on the line. Pharmacists don't have a license to prescribe medicine. If I gave a medicine to one of my patients and they asked and i didn't disclose possible side effects, even though the MD ordered it... I could lose my license in a lawsuit and maybe have to pay restitution. Sweetie, its their job. Period.

 

[Silat]

This is a very wrong statement. Its their job to inform you and its their license on the line. Pharmacists don't have a license to prescribe medicine. If I gave a medicine to one of my patients and they asked and i didn't disclose possible side effects, even though the MD ordered it... I could lose my license in a lawsuit and maybe have to pay restitution. Sweetie, its their job. Period.

So then where is the line drawn? What is enough information, and what isn't?

 

[Chaz1]

So many have no shoulder to lean on

CWE we can speak of our experiences only....each and every body is SO unique....and should be treated accordingly.

But, that being said, means is another BIG issue.....Just wish it was EASY for ALL to be able to try all the dif alternatives....but it’s not and that fact we must be aware of...because my heart breaks when I hear that some (many) cannot even get their hands on meds, expensive vits and minerals..For we in our house are very privileged but fully recognize that many are not...that BREAKS my heart...

Though I understand what u r saying, your relative is very lucky and no doubt there is no shortage of means......but many, many do not have this privilege nor do they have anyone (can u imagine your relative fighting the battle you are walking together ALL alone) in their corner fighting with and for them….and understandably they need meds to have seizure control…….

We have seen 2 specialists now and neither have offered any form of alternatives…which is why we look and DO ourselves...But again, we are privileged and please do consider that many may not be in this TOUGH world we live in

keep sharing.

 

[MonkeyBoy]

Chaz1 - Thanks for clarifying things that I needed to mention. I know that i is difficult to go this alone but wanted to remind people that they must choose that "shoulder" carefully and with both eyes wide open. Desperation can cause poor judgement and bad decisions by all of us. I know I have made them plenty of times before in other areas because of it.

CWE is one of the most incredible places to gather and share. I am thankful we found it.

 

[Bernard]

Bernard - I hope I am not in trouble? ...

No, I just wanted to clarify an important point as your initial post could be misinterpreted.

They're not told about them because there's no real established studies about those diets that prove or disprove them.

This is not true. There are studies and I referenced them in the details of the chart I published. Dr. Kossoff at Johns Hopkins has been doing awesome work in that regards - especially when you consider that there is no commercial entity looking to profit off of the results. The catch-22 about most "alternative" options is that without a profit motive, there generally isn't a funding source for research. This is true even with non-profit groups who sponsor research (they favor applications that can benefit commercial solutions in my very limited experience). The big issue with diets, IMO, is that they require a lot of effort on patient's part. Doctors are not in a position to administrate diets for hundreds of patients. It takes a really motivated patient to make it work. You can see this dynamic easily with diabetes patients. Many are creatures of habit and would rather perish eating per lifelong habit than change to a healthier plan.

Realistically, it would be impossible for a doctor to know every side effect of every medication and tell every patient about them at every appointment...

Doctors do the same thing that most anyone does - look it up when they decide to make the prescription (if they haven't already memorized the data for the subset of drugs they prescribe on a regular basis). They all have access to drug databases like drugs.com that not only give you info about a specific drug, but also potential contraindications and interactions with other drugs and herbs.

 

[MonkeyBoy]

Bernard thank you for clarifying the things Silat mentioned - think they were confusing and left some open ended questions or concerns. As I said before I was just attempting to get people to choose wisely those they listen to and to conduct their own independent research as much as they have the ability to do so. Thanks!!! Have a great 4th of July to all you fellow Americans!!!

 

[Cint]

As I said before I was just attempting to get people to choose wisely those they listen to and to conduct their own independent research as much as they have the ability to do so.

And some of us are continually doing so and have been for years........

 

[epileric]

This is not true. There are studies and I referenced them in the details of the chart I published. Dr. Kossoff at Johns Hopkins has been doing awesome work in that regards - especially when you consider that there is no commercial entity looking to profit off of the results. The catch-22 about most "alternative" options is that without a profit motive, there generally isn't a funding source for research. This is true even with non-profit groups who sponsor research (they favor applications that can benefit commercial solutions in my very limited experience). The big issue with diets, IMO, is that they require a lot of effort on patient's part. Doctors are not in a position to administrate diets for hundreds of patients. It takes a really motivated patient to make it work. You can see this dynamic easily with diabetes patients. Many are creatures of habit and would rather perish eating per lifelong habit than change to a healthier plan.

Actually Dr. Kossoffs Ketogenic is no longer considered alternative (at least by the medical community) because it has had the studies that have proven it worthwhile. Even my neurologist and I discussed it briefly though he did say what you did, that it takes a lot of devotion for it to work.

Regarding profit motive, the alternative medicine industry also runs on profit yet we sometimes tend to overlook that fact. In 2007 33.9 billion was spent on alternative medicine in the US alone.

Americans spent $33.9 billion out-of-pocket on complementary and alternative medicine (CAM) over the previous 12 months, according to a 2007 government survey¹.

http://nccam.nih.gov/news/2009/073009.htm

I'm not saying awful things haven't been done for money but I feel that they've been done by both the pharmaceutical & alternative industries.

 

[Silat]

Doctors do the same thing that most anyone does - look it up when they decide to make the prescription (if they haven't already memorized the data for the subset of drugs they prescribe on a regular basis). They all have access to drug databases like drugs.com that not only give you info about a specific drug, but also potential contraindications and interactions with other drugs and herbs.

My point wasn't that they don't have access to the information, it's that where is the line drawn for telling a patient?

Pull up any substance, and you'll have a huge list of side effects. People mention side effects they weren't aware of on here all of the time, however they're typically not the common side effects. So my question is, if the doctor gives a general list of common side effects, and the patient gets something different, is it the doctors fault for not informing the patient?

Pull up Keppra, for example. The side effects are very long, however the likelyhood of developing most of them are excessively small. Some are more common, like sleepiness, for example. So if the doctor tells the patient about all of the common side effects, and doesn't mention the extremely rare stuff such as hair loss, is the patient then considered misinformed?

There has to be a line drawn somewhere, stating what is informed consent and what isn't, and making a clear distinction between the two. If there's not, then any patient could sue any doctor for any side effect the doctor didn't mention at their appointment that they developed, and force their license to be taken away.

I think the patient should be informed, however I don't believe doctors should have to read off every single side effect of every medication. Doing that would waste a lot of time, and would benefit nobody in the long run. It would just be more red tape that doctors have to follow so they don't get sued. Does anyone really want their doctors to have their hands tied like that? My question is, where is that line drawn?

The difference in the studies is this - For the diets, there are some, however they're few and far between. For medication, there are dozens if not hundreds of studies done for each medication, depending on how long it's been around.

The Ketogenic Diet is different, because there are studies showing it is worthwhile, however that's fairly recent and has yet to become standard practice, though it's beginning to head in that direction. Other diets, such as G.A.R.D. for example, the jury is still out and there's not enough proof to make them any part of standard care. On GARD, it was tested on dogs by a vet. Just because it works for a dog, does not mean it will work for a human, and there are no studies on humans that I've ever been able to find. Therefore, it remains in the alternative medicine catagory.

There's also a difference between proof for us, and proof for the scientific community. People tend to be happy with correlations, scientists want a specific cause. There is a difference... :?

 

[MonkeyBoy]

For those that are serious about doing their own research and gaining a real understanding of how Mg and Ca are involved in Seizures.... These are well worth your time and trouble to download and read and re-read. Study them until you know what you know and it is deep in your soul.

I downloaded these and many more in my quest to gain understanding beyond what the medical professionals were telling us. If the Forum allowed me to post the articles I would but it does not or at least I can not figure it out? Notice how old some of the articles are and that they are found within a "creditable" organization that the medical professionals can also access..... Most of these are stored in the US National Library of Medicine National Institutes of Health or the Journal of American Medical Association Archives.... I will post the abstract or summary so that you can gain some awareness.

http://www.ncbi.nlm.nih.gov/pubmed/17454846

Serum ionized magnesium and calcium levels in adult patients with seizures

R. SINERT1, S. ZEHTABCHI1, S. DESAI1, P. PEACOCK1, B. T. ALTURA2 & B. M. ALTURA2,3

1Department of Emergency Medicine, 2Department of Physiology and Pharmacology, and 3Department of Medicine, State University of New York, Downstate Medical Center, Brooklyn, New York, USA

Abstract

Objective. Prior studies have been equivocal about whether or not serum levels of the divalent ions calcium and magnesium are altered during different types of seizures. Magnesium is a potential modulator of seizure activity because of its ability to antagonize the excitatory calcium influx through the N-methyl-D-aspartate (NMDA) receptor. We hypothesize that serum ionized levels of calcium (Ca2+) and magnesium (Mg2+) would be altered significantly during certain types of seizures. Material and methods. A convenience sample of seizure patients presenting to an emergency department (ED) were enrolled in this prospective study. Novel ion-selective electrodes were used to measure Ca2+ and Mg2+. Data were reported as mean values¡standard deviations. Group comparisons were analyzed by ANOVA with post-hoc testing using the Bonferroni, or the Fisher exact test, where appropriate, a 50.05 (two-tailed). Results. Forty-nine patients with seizure and 32 healthy racially matched controls were included in the study. Seizure patients had a significantly (pv0.001) lower mean Mg2+, but not total serum Mg and a significantly (pv0.001) higher Ca2+/Mg2+ ratio than that in controls.

Conclusions. We were able to show significantly lower Mg2+ and higher ionized Ca2+/Mg2+ ratios in seizure patients compared with a racially matched control group.

I was not able to post any more info for the below links. Please download the articles to get the information.

http://www.ncbi.nlm.nih.gov/pubmed/13840893

http://www.ncbi.nlm.nih.gov/pubmed/1919610

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1500911/

http://books.google.com/books?id=yvU...0LL.D.&f=false