[nevusmom]

OK, so we got a box in the mail today, chock full of products from the glyconutrient company.  But NO instructions on how to use them. I'm guessing that my daughter is supposed to take daily doses of at least 4 of the products.  Given that she is only ten, we are halving the doses recommended on the back of the products for adults.  

We started her on the products yesterday, hoping that they might help control her seizures.  Normally Megan has seizures about every 6 days, and they are very mild.  She had one this morning.  

I'm committed to trying this for about 6 months.  However, if the seizures worsen, or become more frequent, we will put her on anticonvulsants.  

I know that our story will only be anecdotal.  But I want it out there, good or bad.  This stuff will either work for Megan, or it won't.  

Kathy

[doc77]

Hey Nevusmom, hang in there. My 8 year old daughter eats the stuff(Glyco Bears and stuff) and is going to put me in the poor house. I use the stuff in my Wellness business with all kind of kids and its great stuff. Like it on my ice cream.

I get my kid to eat the AO because it has not only 16 or more saccharides it but other goodies.

Remember your daughter will go through detox and she will not feel well at times. Agsin the ice cream, favorite greasey burger with lots and lots of water will help. Might also have to cut the dose down intill she starts running on all clyinders again.

Mannatech vitamin B really helps the Ambrotose fire up.

My kid also kept her dying dog alive for many years on the stuff.

Take care, your servant, Doc.

[nevusmom]

Hey doc77!

Thanks for your comments.  Megan seems to be doing OK, so far.  No seizures (that I have witnessed) yet this week.  

Your mention of the "poor house" got me to thinking...I was actually able to procure this box of various products for a considerable discount through a program this company has.  Your child has to qualify, and Megan did.  Does your daughter have any sort of medical condition that could qualify her?  It might be worth looking into, especially if you are really sold on these products.  

Just so you all know what we are giving Megan every day:

1 glycobear twice a day
1 AO once in the morning (it is in a capsule, so I can't split it)
1 PLUS tablet - half in the morning, half at night
1 scoop of Ambrotose (half in the morning, half at night)

This is half the adult dosage for all these products.

We also got a container of Phyt-Aloe, but I haven't used any of it yet. We got 3 containers of everything else, so I'm not sure that we were even supposed to get this.  I need to call the company and ask.  I'm sure they will tell me to give it to her.  Hmmmm.

Talk to you soon!

Kathy S.

[nevusmom]

Hi Jackie A!

Out of curiosity, where does one purchase the ingredients to make the glyco nutrients?  Is there an official recipe?  

Kathy S.

[nevusmom]

Hey doc77!

Thanks for your comments.  Megan seems to be doing OK, so far.  No seizures (that I have witnessed) yet this week.  

Your mention of the "poor house" got me to thinking...I was actually able to procure this box of various products for a considerable discount through a program this company has.  Your child has to qualify, and Megan did.  Does your daughter have any sort of medical condition that could qualify her?  It might be worth looking into, especially if you are really sold on these products.  

Just so you all know what we are giving Megan every day:

1 glycobear twice a day
1 AO once in the morning (it is in a capsule, so I can't split it)
1 PLUS tablet - half in the morning, half at night
1 scoop of Ambrotose (half in the morning, half at night)

This is half the adult dosage for all these products.

We also got a container of Phyt-Aloe, but I haven't used any of it yet. We got 3 containers of everything else, so I'm not sure that we were even supposed to get this.  I need to call the company and ask.  I'm sure they will tell me to give it to her.  Hmmmm.

Talk to you soon!

Kathy S.

[nevusmom]

Hi Jackie A!

Out of curiosity, where does one purchase the ingredients to make the glyco nutrients?  Is there an official recipe?  

Kathy S.

[nancyrose]

Well - I have been reading this for a few hours now - very interesting - thanks Duane - your insight has been very helpful. What does anyone know about this company - product? newbielink:http://www.micronutra.com/nutratose.html?kbid=1220 [nonactive]
I too would like to try gyco - just not interested in the sales side - or the high prices - but I can't see myself making my own.

[nancyrose]

Well - I have been reading this for a few hours now - very interesting - thanks Duane - your insight has been very helpful. What does anyone know about this company - product? newbielink:http://www.micronutra.com/nutratose.html?kbid=1220 [nonactive]
I too would like to try gyco - just not interested in the sales side - or the high prices - but I can't see myself making my own.

[nevusmom]

Another Megan update:

We are on day 8 of the glyconutrients.  So far, so good.  Megan has been having seizures aprx. once every 6 days.  Her seizures are considered "partial-focal", and are very mild, lasting maybe 10-15 seconds.  Here we are, on day 8, and no seizures yet!  The last one she had was the day we started the glyconutrients.  Two days ago she looked as though she was getting ready to have a seizure, but then it didn't happen.  Not too sure what that was about....

Other than that, she is her normal happy self, and doesn't appear to be having any negative side-effects from the products.  

I'll send another update in a few days.  Thanks everybody who contributes to this forum!

Kathy S.

[Rico413]

OK I have just had a my doctor investigate Glyconutrients and suggest Mannatech.  I am a big skeptic but I will take a look into anything.

Right now I am more skeptical of modern medicine's relationship with drug companies and the failure of our legal system and the FDA to make drugs safe and effective.  My personal belief is that the FDA is bought by the drug companies and our litigious court system has created such a paranoid environment that drug companies couldn't fully disclose all they know about their meds if they wanted to without the legal repercussions.  At any rate it is a mess.

On to my personal experience...  I have ADHD and GAD.  I was prescribed EffexorXR until I couldnt handle the side effects so I tried to slowly wean off.  Instead I got every withdrawl effect in the book.  Dizziness, confusion, depression, aggressiveness, edema, joint pain, connective tissue pain, electric jolts in the brain and legs, sweating, etc.  They dont disclose any of this in the PIs.  I was prescribed Cymbalta and my withdrawl symptoms went away immediately.  Problem is Cymbalta has worse side effects than Effexor.  I gained 25-30lbs in 6 mos PLUS all the bad stuff I had with Effexor.  SO now I have had enough and I dont want to take anything anymore.  So I sloooooowly got off Cybalta.  Taking it slow did nothing but delay the withdrawls.  Now I have terrible edema, confusion, dizziness, anger issues, and difficulty focusing on anything for more than a minute, plust I will talk your ear off if you let me.  Just look how long this post is.

So the weight gain caused back pain, the edema causes leg pain, and nobody can stand to be around me anymore.

My doctor suggested this Mannatech program even though it is expensive.  My problem is with all the bad press this company is getting.

Now here is what I find odd about the complaints...  They are only from people who seem to have never participated or they are from people who took them for a few weeks and quit.

I cannot google and find any stories of the person who took these supplements for 6 months or more and are complaining about getting ripped off.  I have googled "Glyconutrients did nothing for me"  "glyconutrients did not work" and a few variations and cannot find any horror stories.  I cannot believe this is a placebo for anybody who tries it.  Any google any infomercial and you will find horries galore.

I am going to try these things and give them 8 months to show results.  That is unless anybody can show me where I am wrong.  BTW, I dont care about the lack of scientific data.  I dont care about the claims about how it works being false.  If mannatech called the stuff Pixie Dust and it worked and the mechanism was PFM (Pure F'ing Magic) then I wouldnt care so dont bother telling me about the BS.  If it helps me then I dont care why.

Why does the drug company get away with not knowing why side effect occur?

Does it work?  Who has it not worked for?  

As far as making my own, I will try the manatech stuff and piss away $800 and then try to make my own if I feel like it.

Well thats my story.  Feel free to reply with your thoughts

[anagraham]

since no one seems to be supporting 'Duane', i'd like to step in on his behalf. i don't find his posts to be rude at all. i appreciate his desire to tell the truth and support it with calm, factual arguments. whereas you and 'mannamom' seem to be criticizing him on an emotional basis, suggesting you have 'proof' without offering any. this doesn't help anyone seeking to know the truth about glyconutrients.
it seems perfectly logical to me that our bodies would be able to synthesize the nutrients we require from foods. i'm very skeptical of anyone trying to make money by forcing us to be dependent on unnatural sources of 'health', such as pills. i find this especially distasteful when it is promoted with religious propaganda. i even came across a website in which an ordained minister, supposedly a beacon of Christian enlightenment, promoting meds to the gullible faithful. i think that only Americans could be blind to the fact that quoting the Bible in order to sell a product is the height of poor taste (not to mention sacrilege!!).
let's face it, with usernames like "mannamom" and "glycomom" you give "Duane" every reason to accuse you of being proponents of the industry.
the best thing for children is good fresh food, supplemented with lots of love, and not these dubious products.

quote:Originally posted by mannamom

Duane...

I must side with Cathy. you have been nothing short of rude! Lets hear about your profession. I bet you feel you provide a good service, well, I bet someone out there would easily rip it apart because they feel they are superior. You sit there and cut down our PROVEN science and docs....who are you?

Rene

[nevusmom]

Hi Anagram!

I, too, appreciated Duane's comments, but I also read, with interest, what others had to say.  I agree that most of us should be able to synthesize necessary sugars in our bodies.  But I also suspect that there are probably many people who, for whatever reason, cannot.  I think it may be possible that in those cases, gylconutrients may be of tremendous benefit.  For others, it probably just creates very expensive urine.  

I truly believe that in coming years, our diets will become very individualized.  I found out, just a couple of years ago, that my horrible digestive problems were not, as several doctors suggested, related to Irritable Bowl Syndrome, but were actually a manifestation of "Celiac Disease", which is an allergy to gluten in wheat, barley, and rye.  All it took to cure me of my problems was a simple diet change!  The years of meds didn't work; the diet did.  I'm a new woman! My point is, most people can eat wheat with no problem.  I can't.    

On the seizure front, Megan still has yet to have one since we started the glycos.  It is too soon to tell, really.  I'll feel more comfortable giving some credit to the glycos if she remains seizure-free 2 months into the program.

Kathy S.

[doc77]

Dear Nervusmom, glad to here your child is doing well on glycos. What I might suggest to expedite the matter is leave a bottle of Glyco Bears or other around so he can eat his fill at whim. With a watch full eye you might find the child will improve even more. If his friends come over hid them cause they will devour them as candy.

In my wellness business I travel alot and one day I was hit big time with the flu( We have real bad flu bugs in Flordia). I had a new bottle of Glyco or Gummi Bears and decided what a doctor suggested in his findings. So I ate a half a bottle as lunch and within several hours I was feeling much better. Went through the same thing the next day. Now the vitamin C in the bears does raise the skin temp(you actually get hotter which out US Army found the heat kills the bad bacteria). Plus you will poop some what more as the body uses the resources to heal itself. The point is the child might respond even more to a good tasting treat in quest of good health.

In some testing of products it was found that 40 mg of Mannatech's vitamin C was equal to 4,000 mg of other Vitamin C.  

Please keep us posted on the progress.
Your Servant, Doc.

[nevusmom]

A weekly Megan update:

We started the glycos on Sep. 14th, with the hopes that they would help control her partial-focal seizures, which had been occurring aprx. every 6 days.  We are still optimistic!  She had a very brief seizure (less than 10 seconds) on Monday (Oct. 2).  That was the first one since starting the glycos.  Not bad.  We are committing to this program for 6 months.  We shall see what happens!  I am aware that the decrease in her seizure activity could be coincidental.  But at least these products aren't harming her (and MAY be helping).  

Kathy S.

[Galen]

loweduane,

thanks for posting the extensive info you provided in this thread. having recently become interested in glyco nutrients myself i find your information and links very usefull. your critical comments about the marketing of some of the commercial brands is most refreshing.

as a health profesional myself , i find it disturbing that there is such an abundance of anecdotal evidence being used in their marketing, and that a pyramid scheme is being used by one of the biggest companies in its selling. i can also affirm to you that your posts in this thread are very level headed and factual,  and in no way cross the line of personal attack or any unprofessional behaviour.

posters on forums like this should also be required to openly declare their commercial interrests (in their sig for ex), because some of the posts are being made to deliberatly manipulate the conversation and mislead less aware or less informed readers. that type of viral posting makes it hard for less informed readers to find the right information. worse, many people on these forums are looking for information to help their health or loved ones and are therefore more vulnerable. yet in some of the responses here they are being preyed upon by some very unethical and misleading sales drones who are just after making a few bucks from their misery.

keep your eyes open folks, the world is complex enough without adding additional misleading information.

meanwhile i shall go out tomorrow and purchase some glyconutrients from a a reputable company (not Mannatech obviously). nothing wrong with paying normal commercial rates for a good product that has a normal markup, and i am sure my normal suppliers of nutricional supplements will be able to suggest a few good brands. after that when i learn a bit more about this i might experiment a bit myself with a few different brands that have different content. after that if i decide it works well and want to take it longer term, i might even decide to get the raw ingredients and mix my own magic potion.

[Galen]

quote:Originally posted by nevusmom

I'm a first time poster to this forum, and appreciate all I have read regarding glyconutrients.  I am going to be starting my 10 year-old daughter, Megan, on a regime of these products, and will keep you all posted of her progress (or lack thereof).  Megan has multiple health issues, including very mild partial-focal seizures that occur aprx. once a week.  Her neurologist wants to start her on Trileptal, but for some reason, my gut is screaming "NO!"  I have learned to listen to my gut when it comes to Megan, so in researching possible alternatives, I came up with glyconutrients.  I'm not anti traditional medicine at all, please understand this.  And I will definitely start the Trileptal if there is no improvement on the glyconutrients.  

What can I do to make this as scientific as possible?  My desire, by posting, is that somehow we will ALL learn from this experiment.  Suggestions?

BTW, I purchased these products directly from the company; not a salesperson.  I have NO financial stake in this company at all, nor do I want one.

Best to everybody,

Kathy S.

hi nevusmom,

you being the original poster of this thread, you shouldnt be overlooked  

you mention your daughter has a number of different health issues in addition to the partial focal seizures, but there isnt to much specific information about your daughter's other complaints in your post so i have no idea of the broader context. regarding using natural therapies for the partial-focal seizures you might also consider using some good quality fish oil supplement ( this would usually have to be taken as at least 3 grams per day to be effective, since most of us dont eat a significant amout of fish on a dayly basis). there is lots of good information available on its importance for brain devellopment and function, and would be one of the least harmfull and easiest things to add to her diet. it would be the first and single most important nutricional supplement i would look at first if one of my children had this type of problem. please note there are many types of fish oil supplements, and some are better than others. it would take for a few months to see if it has a beneficail effect, but you might be able to take it at the same as the glyconutirents just started on so you dont waste more time.

do be aware that it is important that your daughter continue to be monitored by the neurologist, and it is best to be honest with him/her about the nutricional supplements you are trying. i presume they will already have done the normal EEG's and brain scans etc., and have currently decided to just treat her symptoms because they have excluded any current major underlying pathology.  also understand that the use of anti seizure medication is not just to reduce the symptoms (the seizures), but also because frequent or repeated seizures can sometimes gradually increase injury to the brain, or have an increased risk of accidents and falls etc..  

[nevusmom]

Thanks Galen!

I will look into fish oil supplements.  If you have a recommendation, I would appreciate the information!

Megan was born with a really rare birth defect (1-500,000) called a "giant congenital nevus".  It is a dark brown birthmark covering aprx. 70 percent of her body. In addition, she has hundreds of smaller "satellite" nevi covering her remaining skin.  About 30 percent of children born with this have spots on their brain, or within the central nervous system.  This condition (neurocutaneous melanosis) is generally benign, but can cause serious neurological complications, primarily seizures and hydrocephalus.  The mortality rate among children with neurological symptoms is around 70 percent within a year of the onset of the symptom.  

Unrelated to her skin, Megan also has a mitral valve prolapse.  It, like the seizures, isn't too bad, as these things go.  

Those are the cold, hard facts!  

Now the feel-good stuff:  my daughter is, in every other way, a normal, rambunctious, precious kid.  She has a vocal belt like Ethel Merman!  She has above-normal intelligence (of course!), and is currently traveling with her dad (and my husband) to help with fund-raising for Nevus Outreach.  There is some GREAT research being done into this, and we are determined to support it.

Thanks for the explanation of the reasons to control the seizures.  I had heard that additional damage could be done to the brain.  When Megan was a baby (4 months old), we had no choice but to put her on anti-convulsants.  Even though her seizures were mild as seizures go, they were increasing in frequency to the point where brain damage was feared.  The phenobarbital and tegretol did a great job of controlling them!  She had her last seizure at 18 months, and we were able to wean her off the drugs by age 3. She remained seizure-free until last November, when she had one.  Then she had another in December, a couple in Jan., and so on, until they leveled out at about one every 6 days. For some weird reason, I just don't want to put her back on the drugs.  My gut is screaming, "NO!"  And I'm one of those people that has learned to listen to gut feelings.  We tried to capture a seizure on a portable EEG which she carried around for 48 hours.  What a trooper! But no luck.  Her MRI didn't indicate any changes in the spots on her brain.  It was suggested that the seizure might be caused by a "pre-puberty hormonal surge" God help us!!  At any rate, this is where we are today.

Megan survived her first round of symptomatic neurocutaneous melanosis.  We are praying this round is just another blip in her journey.  So far, so good!  She called me this afternoon from South Carolina just to let me know that there was a POOL in their hotel, and SHE was going SWIMMING.  Mark will keep an eye on her, just in case.  

Talk to you soon!

Kathy

[doc77]

Hi Nervusmom,
   Had three healthy kid, one might just end up a doctor. Then I had
a girl who was born with a heart defect. She was later hurt in a accident that left her with skull damage that shows under great activity. She then almost died in a swimining accident. Now 8, with much worry later, our 'Glyco Baby' seems to be in perfect health. She is not even a 30/30 baby, with excellent heath except for the fact like yours she is one rambunctious kid. I just caught her and friend in by bottles of glyco supplements. Her father(my daugthers friend) was healed by our' bug juice'(glyco supplements) We have a community program which we give it away to poor people if they can't afford it.
   One other thing I was damaged in motorcycing racing and had a mild form of epilepsy. The air force spent many years, dollars and EEG's to solve the problem. I used some precription drugs for years off and on. What is funny is that they could never find the problem intill a civilian doctor found it on a EEG. So don't give up on the doctors or meds. There are some fine ones out there.

Another gem, I too was born with a mitral valve prolapse which after 2 years of glyco supplementshas seemed to have disappeared, plus I no longer need to take my high blood pressure meds.

I like the idea of the fish oil which I recommand as a health consultant. A man by the name of Banting has some interesting finds in its history along with the Eskimo diet.

Last but not least Mannatech has a web sponsored science web, along with a direct link to other great sites like PUB MED, HON(Health on the NET). It is a peer reviewed by many Md/DO's, PHD's and IOU's and other leading scientist. Our own Dr. Lefkowitz, of the great University of South Flordia(ya Bulls) is on the sites and is very much into the science of glycomics. Site is GLYCOSCIENCE.ORG.

USF is also going to be trying to help a friend who has baby of three with  Hypoposphatemic Rickets. She has just started glycos and though she really dislikes food, she loves Gummi Bears.
She is cute as a button and walks like Gary Cooper.
Last but not least your doctor can find the Mannatech products in his bible, the PDR.

Your servant, Doc77.

[Galen]

nevusmom,

fish oil can be found from many brands, some cheaper, some very expensive. when comparing a few of the products that are available in your area you should be able to find a good product at a reasonable price. the main active ingredient we need from fish oil is omega-3 essential fatty acids (there are other omega fatty acids to, and at times there might be a need to add some of those, but omega-3 is the main one that most of the studies have been done on so far). some of these fatty acids can be sourced from plants etc, but their action is a bit different. for your purpose you need the fish oil source.

it is important to confirm that the source of the fish oil is from wild fish, not farmed fish.. the oils extracted from farmed fish do not have the same quality or biochemical makup as those normally found in "real fish". most of the good reputable companies that manufacture fish oil supplements will use the good quality oil from the correctly sourced fish, so dont be to concerned, but it is the reason to be carefull with the very cheap end of the market in this product. try also to check that the vit A content is not to high (because your daughter is still growing, and vit A in high dosages can be toxic).

second thing to look for is the amount of "equiv. EPA and DHA" per 1000 mg of fish oil capsul.  those numbers will give you an idea about the general quality of the oil. their degree of content in the fish oil gives an indication of the main active ingredients. some of the best products will have someting like .....
total Omega-3 Marine Triglycerides = 500mg
 equiv . EPA ( eicosapentaenoic acid ) = 300mg
 equiv.  DHA ( docosahexaenoic acid) = 200mg
those numbers are for a single 1000 mg fish oil capsul

the usual brand that i choose has a lower content of EPA and DHA, like equiv EPA = 180mg, equiv DHA 120mg. But the brand i personally choose is 30% cheaper per bottle yet has 3x the amount of capsules per bottle compared to the expensive brand above, and is locally made by a company that has a good reputation for quality control. so i just need one extra capsul to get to the desired EPA/DHA levels, and  still end up getting about 2x the amount I would get from that more expensive brand. i just describe that logic so you have an idea of how to look for quality at a good price, to get your bang per buck ratio right    .

considering the age of your daughter, i would aim at 3000 mg fish oil per day ( 3 gms), and you would want to take that over 2 or 3 months before you decide if it is helping or not. (the indication it is helping would be to reduce the frequency and severity of the seizures obviously). a dosage of 1000 mg fish oil per day would be to low to be effective, and some specialists and therapists sometimes recommend up to 6000 mg for teenagers for various medical conditions. you have given more details of your daughters situation, but obviously in a conversation like this i can only just give you general sugestions. be aware nutricional supplements like this just replace nutrients you could/should get from the right diet, the dosage is not at a pharmacological level where it is more likely to have an added risk of potentially toxic side effects.  the only reason to take it as a supplement is so you dont have to change your families whole diet to much, because you are trying to get the main active ingredients you would get normally from eating a few 100's gms of real fish per day. you might want to read this on amega 3' to get a broader context of their importance.   newbielink:http://en.wikipedia.org/wiki/Omega-3_fatty_acid [nonactive]

if your daughters current seizures are simply related to a growth phase, then i am fairly confident the fish oil will be a significant help (most of the more recent fish oil research has been done on brain function and neurological and  cardiac problems, etc..). the thing to be aware of is that there are a number of other potential reasons for the recent recurrence of her seizures, and it is the reason she is monitored by a neurologist. you can probably find some good information on the fish oil issue by looking at medline (pubmed) and google scholar (scholar.google.com), but i wouldnt delay the start of the supplement to much, because you need to start seeing some improvement in her condition soon, to justify delaying the start of anticonvulsive medication (for the reasons i mentioned earlier).

[nevusmom]

Thanks for the fish oil info!  Mark and megan are home from their travels, so we are going to find some and start taking it.

On the seizure front: Megan had a very small one (even for her, it was small) on Oct. 13.  Sooooo, from the time she started the glyconutrients to now (a month), she has had 2 seizures.  Normally, in this time period she would have had anywhere from 4 to 6.  So there does appear to be improvement.  Yes, it could be coincidental.  

We shall see what this next month brings!

best to all,

Kathy S.