Herbs vs Pharmacuticals

[shesulsa]

From the Epilepsy Action website:

[font=Arial, Helvetica, sans-serif]Seizure control[/font]
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[font=Arial, Helvetica, sans-serif]at 6 months[/font]
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[font=Arial, Helvetica, sans-serif]at 12 months[/font]
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[font=Arial, Helvetica, sans-serif]Number initiating the diet: 150[/font]
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[font=Arial, Helvetica, sans-serif]over 90%[/font]
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[font=Arial, Helvetica, sans-serif]48 (31%)[/font]
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[font=Arial, Helvetica, sans-serif]41 (27%)[/font]
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[font=Arial, Helvetica, sans-serif]50-90%[/font]
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[font=Arial, Helvetica, sans-serif]29 (19%)[/font]
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[font=Arial, Helvetica, sans-serif]30 (20%)[/font]
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[font=Arial, Helvetica, sans-serif]under 50%[/font]
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[font=Arial, Helvetica, sans-serif]29 (19%)[/font]
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[font=Arial, Helvetica, sans-serif]8 (5%)[/font]
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[font=Arial, Helvetica, sans-serif]Number continuing the diet[/font]
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[font=Arial, Helvetica, sans-serif]106 (71%)[/font]
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[font=Arial, Helvetica, sans-serif]83 (55%)[/font]
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[Kenpodoc]

Shelusa,

I'm not a neurologist but I'll try to respond. At the turn of the century epilepsy was treated with some success with enforced fasting. Unfortunately this cannot be done for long and has obvious draw backs.The ketogenic diet as such was first proposed and used in 1921 but was subsequently lost from favor due to the difficulty of the diet and the relative ease of newer medications.The diet is very difficult, heres a sample:

Sample Meal Pattern
for an 8-year-old 24-kg child return to TOP
Divide fat, protein & carbohydrate into 3 equal meal
Breakfast
90g 30% cream
22g applesauce
22g bacon
10g puritan oil
Lunch
90g 30% cream
57g hot dog
5g potato chips
21g puritan oil
Dinner
90g 30% cream
44g sausage
5g cashews
25g puritan oil

The diet is also not without side effects. Kidney stones, decreased growth, bone fractures, lipid abnormalities, loss of ability to participate with other children in parties, meals and other social activities. The enormously unpalatable diet may be its most daunting feature. Studies show that 50 %- 70% develop fewer seizures and optimistically 30% become seizure free. Eventually 10% may become seizure free but these numbers are difficult and since some of pediatric seizure patients "grow out" of their seizures this is a difficult number to prove without large long term studies. The benefit of the diet is the ability to get off sedating medications a problem which is more significant for some than others.

The diet returned to national attention in 1994 and is receiving appropriate respect in neurologic centers. Pediatric neurologists should at least be familiar with it. It has been harder to implement on a large scale than earlier optimistic expectations had hoped for.

I'm not saying that physicians are perfect, they certainly are of variable ability and not all equally care for their patients. I'm just saying that there is no grand conspiracy to make the drug companies wealthy and that physicians care about their patients and most of us stand by our patients to the very end. This physician patint relationship is what differenciates medicine from many of the alternative providers (not all.)

The quoted 80% cure rate has clearly not held up to scrutiny. Some nutritional faddists have claimed extremly high cure rates and that the diet works equally well on all seizure types. This is clearly not true and further more has ignored the difficulty of the diet and the other medical side effects of the diet.

Respectfully,

Jeff

 

[shesulsa]

This diet is VERY restrictive and VERY involved, though VERY successful. When pediatric neurologists are asked why they don't prescribe this diet rather than going as far as recommending and performing hemispherectomy* is that the diet is inconvenient and dietary changes are not considered treatment for disease, rather they are considered to be an alternative therapy.

*a hemispherectomy is where the half of the brain deemed responsible for most of the seizures is removed - much less successful than the Keto diet, yet recommended much more often, nonetheless.

 

[shesulsa]

Kenpodoc, thanks for the productive exchange on this, and please understand I do not mean to be argumentative, rather I think it's important that we consider things like this.

The other important factor to consider regarding the Keto diet is that it is a SHORT-TERM diet, relatively speaking. Parents have to slave to this diet for at least one year, though every parent who has had a child successfully return on the other side swears every moment was worth it. Which begs the question - are we really willing to be irresponsible with our health?

It is my ... um ... not so humble opinion that we as citizens need to educate ourselves FAR MORE than we already do on the benefits of dietary and lifestyle choices, REALISTIC alternatives for maintaining and recovering health WITHIN REASON and know when a doctor can really help. I'd also say we need to make more use of nutritionists and physical therapists in our lives which could prevent a lot of unnecessary prophylaxis, surgery, pain and disease.

FWIW,
G

 

[Kenpodoc]

This diet is VERY restrictive and VERY involved, though VERY successful. When pediatric neurologists are asked why they don't prescribe this diet rather than going as far as recommending and performing hemispherectomy* is that the diet is inconvenient and dietary changes are not considered treatment for disease, rather they are considered to be an alternative therapy.

*a hemispherectomy is where the half of the brain deemed responsible for most of the seizures is removed - much less successful than the Keto diet, yet recommended much more often, nonetheless.

If the alternative is a hemispherectomy the decision is a no brainer . I certainly would choose the diet before the surgery but i've never seen the surgery recomended in anyone I cared for. I have a very difficult time getting parents with 150 lb 8 year olds to take the potato chips out of the house, in my average patient this diet will be near impossible. I do agree that people have to take more responsibility for their health, I can advise healthy changes but have very little control over patient choices.

Jeff

 

[Kenpodoc]

Shelusa,
I just realized that my response may look insensitive please know it's not meant that way. A hemispherectomy is an extreme solution and to me a horrible choice to be given I don't personally deal with such extreme cases but cannot imagine why the diet wouldn't be done before considering such an irreversible and drastic solution. No need to tell me but you are clearly more knowlegable about this subject than I am, may I ask how you became so well educated on this subject?

Jeff

 

[arnisador]

Looking at how hard it is to get people to take prescribed meds., and to stay on a healthy diet even when it's clear their health depends on it, I'm not surprised to learn that it's hard to get people to stick to this diet even though the importance would be obvious. How many people have been tol dto eat right by their physicians because of heart disease that is already present? How many do? For whatever reason, compliance remains a big issue.

 

[Kenpodoc]

Looking at how hard it is to get people to take prescribed meds., and to stay on a healthy diet even when it's clear their health depends on it, I'm not surprised to learn that it's hard to get people to stick to this diet even though the importance would be obvious. How many people have been tol dto eat right by their physicians because of heart disease that is already present? How many do? For whatever reason, compliance remains a big issue.

It's always a problem. Incidently, I don't use the word compliance. I use adherance. I know it's semantics but compliance implies that the patient has an obligation to follow my advice. Adherance doesn't imply moral obligation and just is a statement about whether the treatment plan has been followed. It's my job to work with the patient to find a way to help them feel better, be healthier or both. I offer advice. It's their job to choose if they choose to follow my advice. I tell patients to find a doctor they trust and to listen and work with them. If they can't follow the advice they've been given go back and discuss why and either change the objectives of therapy or look for a new way to approach the problem. If they still can't follow the advice they've been given, re evaluate if they trust this doctor.

Jeff

 

[shesulsa]

Shelusa,
I just realized that my response may look insensitive please know it's not meant that way. A hemispherectomy is an extreme solution and to me a horrible choice to be given I don't personally deal with such extreme cases but cannot imagine why the diet wouldn't be done before considering such an irreversible and drastic solution. No need to tell me but you are clearly more knowlegable about this subject than I am, may I ask how you became so well educated on this subject?

Jeff

Hey, KDoc - nope, I almost posted a laughing man in response to your post but was trying to be sensitive to other members. And I agree that hemispherectomy is an extreme solution, i.e. it is to me as well. As for my knowledge on the subject ... well, when you're presented with a mystery and you're grabbing at straws, you examine every straw to it's fullest extent and beyond. My son was diagnosed with atypical autism (my dx would be mild CP with atypical autism affects with possible epilepsy) which is a mystery that at the time even the "experts" were giving limited promise to. No offense, Doc, but there really hasn't been a doctor who has done much for my son - it's been my own research and careful alterations to diet and supplementation along with my own kind of behavioral therapy that has gotten him where he is now. I've done ... LOL ... a little reading ... LOL!

 

[TonyM.]

I feel for you Shesulsa. I've had Aspergers' syndrome since I was a young child and certainly could not have been a picnic to grow up with. With me the worst part (in my opinion) is the motor, spacial and visual hyperlexia. The tourettes is a close second but I've overcome that for the most part with word substitution.
I'm very thankful I grew up when I did as There was no diagnosis for ADHD or Aspergers' at the time so I was never treated.
Most people are shocked when I tell them I have Aspergers'. They universally say that they had no idea their was anything "wrong" with me. I usually have to dust off my speed reading or photographic memory or internal math skills to prove it.
Overall I would have to say that substituting behaviors has been my most useful tool, ie. For the most part flapping and rocking have been replaced by drumming and dance. And all you have to do is add proffessional gear and climbing becomes appropreate.
On the ketogenic diet. I discovered this by accident at age twelve when I finally put together that sugar was making me sick and cut out all sugar, milk and way back on the starch. That year I had my last seisure to date and made it all the way through high school without missing a day out sick.

 

[Phoenix44]

Got to agree with Kenpodoc. People rarely want to be responsible for their own health, really, or even their children's. Especially if it requires any amount of thought or inconvenience.

21% of 4 year olds registering for kindergarten in NYC are obese. Not chubby, OBESE! 61% of American adults are overweight or obese. People would rather have a gastric bypass operation than go on a reasonable regimen of diet and exercise.

Geez, you can't even get reasonably intelligent people to quit McDonalds!

 

[Kenpodoc]

Hey, KDoc - nope, I almost posted a laughing man in response to your post but was trying to be sensitive to other members. And I agree that hemispherectomy is an extreme solution, i.e. it is to me as well. As for my knowledge on the subject ... well, when you're presented with a mystery and you're grabbing at straws, you examine every straw to it's fullest extent and beyond. My son was diagnosed with atypical autism (my dx would be mild CP with atypical autism affects with possible epilepsy) which is a mystery that at the time even the "experts" were giving limited promise to. No offense, Doc, but there really hasn't been a doctor who has done much for my son - it's been my own research and careful alterations to diet and supplementation along with my own kind of behavioral therapy that has gotten him where he is now. I've done ... LOL ... a little reading ... LOL!

Sounds like your son picked the right mother. Without having met him, it sounds as if your diagnosis is a good working diagnosis. The problem is that the autism spectrum is probably a mixed group of disorders under a single name which makes treating and research difficult. Some with autistic diagnosis clearly respond to diet but it's difficult to pick the right diet and it takes a little luck and good observant involved parents. Diet also doesn't always work, so it's a difficult connundrum. I agree that doctors are unlikely to do much because we don't have a cure and the sympomatic treatment we offer is mixed at best. The problem I see is that fearful, earnest parents can become the victims of unscrupulous alternative providers. I find that there is no one right answer for chilren such as your son and that it is often difficult to find a caring medical partner in the search for an individuals best therapy. Consistant behavioral therapy such as you talk to has in my experience been the best available option but it can be emotionally and physically draining.

respectfully,

Jeff

 

[shesulsa]

Sounds like your son picked the right mother. Without having met him, it sounds as if your diagnosis is a good working diagnosis. The problem is that the autism spectrum is probably a mixed group of disorders under a single name which makes treating and research difficult. Some with autistic diagnosis clearly respond to diet but it's difficult to pick the right diet and it takes a little luck and good observant involved parents. Diet also doesn't always work, so it's a difficult connundrum. I agree that doctors are unlikely to do much because we don't have a cure and the sympomatic treatment we offer is mixed at best. The problem I see is that fearful, earnest parents can become the victims of unscrupulous alternative providers. I find that there is no one right answer for chilren such as your son and that it is often difficult to find a caring medical partner in the search for an individuals best therapy. Consistant behavioral therapy such as you talk to has in my experience been the best available option but it can be emotionally and physically draining.

Good post and I wholeheartedly agree. It is indeed a difficult connundrum for all of us when there are other available remedies than chemicals and surgery but so few willing to commit to any kind of healing for themselves or their children. The saddest part of all is that is often seems like no big deal until it happens to the individual - then it's huge.

Here's another one: the herb chickweed is an excellent remedy for skin ailments and viruses such as varicella. My older children came down with healthy cases of chickenpox. I had this nasty illness for three weeks as a child (i.e. blisters and a second and third round of blisters). I was advised of chickweed by a naturalist. I steeped the bulk herb in hot water for 30 minutes and poured it into a shallow bath which one child played in. They drank fresh chickweed tea sweetened with apple juice and I dabbed more tea directly onto the blisters (this is during day two of outbreak) - they were crusted within 24 hours, scabs gone within an additional 24. My son's outbreak lasted four days, my daughter's five. Calamine lotion can't touch that. They had very little itching, fever was reduced and they have full immunity. Anyone I recommended the external use of the herb to has always had great results.

 

[Jonathan Randall]

If you want to live longer eat less and get thinner. If you want to stay active and stay out of nursing homes, get fit. If you want to keep a sharp mind never quit thinking and keep learnig new things. Medicine as a profession understands this and preaches it but has little control over peoples individual choices. We are forced to use "high tech" bandaids and criticized when they are inadequate. Smokers and their families wonder why we cannot cure damaged lungs, fat inactive diabetics wonder why we can't cure thier diabetes and people with runny noses which will resolve on their own in 7-10 days want us to fix them instantly. Vitamins in general are just a distraction from the important message that health comes from limiting calories, adding vegetables to the diet, maintaining activity, playing, maintaing a social life, maintaining friendships, thinking and learning. Real long term health is personally driven.

Sorry about the rant,

Jeff

Don't be; your post contained some GREAT ADVICE. I noticed an INSTANT improvement in my health and mental well being when I exchanged the nightly chips and dips for tomatoes and other vegetables and fruits and set up my Wavemaster near my bed so that I would get a few extra "unscheduled" workouts each week. It's worked. I do read a lot about vitamins, other supplements, and alternative therapies. Many have merit, but I also don't hesitate to consult with and take advice from LICENSED PHYSICIANS. Last year when I had severe kidney stones, no amount of vitamin therapy would have helped. I would have liked to have tried Shesulsa's remedy for chickenpox, though.

One area where I think supplements are great are mood stabilizers such as valerian root and kava - of course they shouldn't replace professional help for the seriously afflicted. Sure, I know about the "kava scare"; however, IIRC, the number of problems with kava are dwarfed by the side effects some suffer from common aspirin. Also, the pills sold were 300 mg. each - with a recommended dosage of 3 tablets up to three times daily to a possible dialy dosage of 2700 mg. The islanders who made Kava tea, IIRC, used 50 milligrams, not 2700!

I also think glucosamine is a great supplement, although I suspect the "recommended dosage" on the packages are probably high.

 

[Cryozombie]

21% of 4 year olds registering for kindergarten in NYC are obese. Not chubby, OBESE! 61% of American adults are overweight or obese. People would rather have a gastric bypass operation than go on a reasonable regimen of diet and exercise.

Yeah but you know what? By GOVERNMENT standards *I* am obese.

Yet, my doctor told me NOT to try and get down to that target weight, as he is of the opinion that I would be "underweight" if I did. He gave me a target weight that he feels is closer to appropriate for, well, me... and that # just makes me overweight, not obese. That number is also 20 lbs heavier tha the GVT sais I should be.

So... those stats... *shrug* Maybe yes, maybe no.