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hootie

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Just a note to introduce myself and say hi to my new friends:hello:

My ten year old son was just diagnosed with having absence seizures two weeks ago. He probably started having them sometime during this past summer but I am not sure. He had an EEG when he was three years old. No seizures were noted at that time. His recent EEG indicated almost 140 seizures in the 48 hour period but I only saw two absence episodes.

He regressed into autism at about 18 months and he has multiple food allergies. From what I know, greater than 30% of autistic people end up with seizures. So...here I am with another issue to contend with.

His neuro prescribed depakote. I started giving it to him on Friday.

We have been using a biomedical approach (vitamins, minerals, supplements, chelation, HBOT, etc) to manage his autism since he was about two. A few things stick out in my mind as helping him--chelation, methyl B12 and TTFD (a certain form of B1). Homeopathy (energy medicine) has helped him tons as well.

We detected seizure activity with a QEEG. I was wanting to try neurofeedback to help with all that goes along with autism. This is when the NFB practitioner determined seizure activity and sent us to a neurologist to address it. My son's neuro is pro NFB but wants him on seizure meds before starting the treatments. He will start NFB in early January. I am hoping to wean him off the depakote as the NFB decreases the seizures.

I guess my son's story is a little jumbled but I think you get the picture. I have read many of the posts on NFB here already and I am anxiously waiting to get started.

Nice to meet you all!:xmas:
 
Howdy hootie, welcome to CWE!

It's great that your neurologist is pro-NFB. It sounds like you're being very proactive with your son's health, and that it's making a big difference.
 
WELCOME H!
I wish you luck with the neurofeedback. Are you familiar with Stan Kurtz's site? Healing the GI tract and getting the food allergies under control will also help the NFB to be more successful.

My daughter does not have autism, however she has many similar symptoms of GI issues. My oldest son has high functioning aspergers, and my middle son has an autoimmune disorder. It all would be interesting if it weren't so darn disruptive.
 
Welcome Hootie

If you would like you can document various treatments & see the success (or lack thereof) that people have had.
 
HiHootie! Welcome to CWE. This is a fantastic place to get information. :) I'm sure you'll find some great info from the other parents here.
 
Everyone--

Thanks for the nice welcome!

Robin--
Yes, I am familiar with Stan. I think his son recovered from autism with MB12 and Valtrex (a viral kid).

My son has tried it all and not made major gains on anything although biomedical has helped him for sure...that is why I continue on that path.

I work at a well-known Defeat Autism Now! doctors office so I am very familiar with all that biomedical stuff. It is a life saver for a select few, it helps many and for some it does nothing no matter what they try.

I am so happy that there are others on this site that have used NFB and seen success. I am praying that it will help my son in some way and not just be another case of $$$ down the toilet and lots of time wasted. Fortunately, the office where I will take my son is within 5-10 minutes of our house.
 
Everyone--

Thanks for the nice welcome!

Robin--
Yes, I am familiar with Stan. I think his son recovered from autism with MB12 and Valtrex (a viral kid).

My son has tried it all and not made major gains on anything although biomedical has helped him for sure...that is why I continue on that path.

I work at a well-known Defeat Autism Now! doctors office so I am very familiar with all that biomedical stuff. It is a life saver for a select few, it helps many and for some it does nothing no matter what they try.

I am so happy that there are others on this site that have used NFB and seen success. I am praying that it will help my son in some way and not just be another case of $$$ down the toilet and lots of time wasted. Fortunately, the office where I will take my son is within 5-10 minutes of our house.

I hope your son does better soon hootie. Stan's son never tested positive for any viral infections. He says this in a video on youtube during a conference.

Have you had your son's glutathione levels tested? You may also be interested to know what his amino acid levels are. Most autistic kids test normal for every standard blood test that there is. However, you may be surprised to find some of his amino acid levels off.

Specifically, check the glutamate, glycine, cysteine, lysine and creatinine levels. Also do a vitamin check and a metal test.

but most importantly, check his glutathione levels. Glutathione is different than glutamate, but is made from 3 amino acids; glutamate, glycine, and cysteine.

Glutamate and glycine are neuro excitotoxicity amino acids. New science has discovered that these levels are off in many people with neurological disorders with great speculation that the glutamate and glycine from geletin in the MMR and other vaccinations may be a contributor.

However, it's important to understand what glutathione is also before only blaming vaccines. Glutathione is the body's mosy powerful antioxidant and when the level becomes low, then the liver does not function properly either.

In fact, alcoholics and pill poppers usually get low glutathione before their liver goes bad.

When the liver cannot properly detoxify bad stuff out, then the body will begin to store toxins in different parts around the body by circulating in the blood and finally saturating the organs and causing oxidizative stress on the RBC's.

Think of it like an apple. Peel it and let it sit for a few hours, then it will brown. But let it sit for a month and it will decay. This is what low glutathione levels do in a sense.

Once the glutathione levels become low, all that extra glutamate, glycine, and cysteine have to go somewhere else too. If it no longer is being used to produce glutathione, then it will store in the body and eventually damage and kill off cells in the brain. Too much damage, and ADHD, speech delays, autism, schizophrenia, Parkinson's, Alzheimer's, epilepsy, and other problems will begin to occur.

In addition to cell damage, when the glutathione levels become low, heavy metals will also become rich in the body and store first in the blood and then thin out by leeching into the organs like the brain. This is because the liver can't detoxify heavy metals when the glutathione is low.

Glutathione is like a sticky cell that usually absorbs poisons in the body and carries them off. But when it is low, the toxins overtake the glutathione and homeostasis becomes unbalanced throughout the entire body.

You can use glutamate blockers to help, but that only treats some symptoms. If you get the glutathione levels back up, this will fix many of the problems leaving only old dead and damaged cells floating around to fix.

Stem cell therapy works for some and not for others because it all depends on the current glutathione levels, damage that already exists and if the equilibrium (homeostasis) problem is not fixed first, then stem cell therapy will not last long either.

This goes for almost every biomedical therapy that there is for autism as well. I have a list of over 50 effective therapies for autism right now. But the problem is that they don't work for all ASD cases and some don't last long, while others work like miracles.

ASD is caused by many factors. Genetics, chromosomes, environmental toxins all play a role. Just like baking a loaf of bread takes exactly the right amount of ingredients to get bread, so is autism. If one autism ingredient is missing, you either don't get it, end up with ADHD, or have other similar conditions that are on the mild spectrum.

Autism is not the big mystery that many people think. The research is already all done, but no one has organized it well. What I just explained is a drop in the bucket to what I really know and I'm just one person. Imagine if we got politics out of the way and really focused on finding a cure for autism without any blame. That would be amazing and what we really need.

And oh yeah, Valtrex has a direct affect on the glutamate and glycine levels in the body. So does HBOT therapy, GFCF diets, Hyperthermia (high fever), and lots of other strange things.

Because autism is caused by so many things, it is also reversed by many things. This confounds most people because they can't pinpoint anything when they get stuck on one topic. An open mind finally made it obvious to me that amino acids have a lot to do with autism.

Girls have more estrogen than boys. Estrogen protects glutathione more-so than testosterone. This is why girls get autism less.

To conclude, autism for many (not all) is really only a case of unbalanced amino acid levels in the brain, along with toxin poisoning from low glutathione levels as a precursor to all of it. Once the body's equilibrium is thrown off, it can take weeks to several months to notice the damaging affects that we see as ADHD, speech delays and autism.

Balancing the equilibrium back out by correcting the glutathione levels may be promising for recovering an autistic person. However, there still may be oxidation cell damage that theoretically stell cell therapy may correct or with enough time the child could recover quite well on their own through a natural healing process, influenced by positive therapies for autism.

Chelation by DMSA has been the most promising way to both remove metals and raise glutathione levels. DMSA will show a positive mercury and lead poison test once initiated because these metals will eventually stop flowing in the blood stream and embed within the brain tissue and other organs.

Because DMSA is a form of removing metals from the body, it can also remove good metals that the body needs so a good average supplement is recommended during chelation.

In addition, DMSA has been proven as one of the safest and most effective methods of chelation in an autistic child, leaving very mild temporary side effects for some with long lasting positive effects for many as well.

I hpe this helps a little. I'm by far no doctor, but instead a father that is currently watching his daughter recover from autism every day. 5 months ago she lost all of her language and I know by research was about to fall into the epilepsy category because she was ill every day with several negative symptoms associated with some autism cases.

She was suspected to have a problem at around 18 months, but as first time parents we missed the early signs and did not get a diagnosis until she was 2 and 1/2 earlier this year.

Since then, I have dedicated my every free moment and obsessed over helping her. I'm not your average google researcher though. I personally have sifted through several hundred if not thousand scientific articles from PubMed and other scientific databases.

In addition, I have created a system that automatically researches autism for me 24hours a day and reports to me only associations that I am interested in. once I find something like "glutamate, glycine and autism" or "DMSA", I add it to my algorithm and watch the important stuff come to me. Multiply that by 1000 autism topics and you can start to get the point.

So my time is more well spent with my daughter, yet in my free time, I sift through my algo and focus on the good stuff.

I'm a noob, so I can't post more links, but will upon request. In the mean time, go to pubmed and look up

PMID: 19043938, 19161050 and 19284184.
 
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Hi Lavinco --

Thanks for this. It's heartening to hear that the information you've gathered is helping your daughter to improve. The inability to process heavy metals has clearly played a role in the development of autism, and the data about glutathione confirms he significance of this connection. I wonder if the increase in autism diagnoses in the last decade is directly linked to the increasing amount of toxins in the environment, since those can potentially effect both the nature (i.e. genetic material and fetal development) and the nurture (i.e. exposure to environmental toxins) of individuals with autism.
 
Lavinco -Thank you so much for this post

My daughter also lost speech at the age of 18 months. It slowly came with speech classes, but she regressed again at the age of 5 after boosters. Now she has seizures.
She does tend to have high estrogen, and is not producing progesterone (or at least wasn't when we tested 3.5 yrs ago) I did not suspect a problem until her first seizure at the age of 14. I have another son that was diagnosed at the age of 15 with HF aspergers, and another with an autoimmune disorder. For my daughter we definitely have toxins in the body.

We continue to control seizures with nutrition. I look forward to following your blog.
Thank you for taking the time for posting such a thoughtful post.

I think for some of us we can switch out the words autism for seizure disorder/epilepsy as many of the symptoms are the same. The directions used that are showing positive results in those with autism, are also showing results in those with seizure disorders. Unfortunately Autism has been the poster child. Epilepsy is still finding it's voice.
 
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Lavinco -Thank you so much for this post

My daughter also lost speech at the age of 18 months. It slowly came with speech classes, but she regressed again at the age of 5 after boosters. Now she has seizures.
She does tend to have high estrogen, and is not producing progesterone (or at least wasn't when we tested 3.5 yrs ago) I did not suspect a problem until her first seizure at the age of 14. I have another son that was diagnosed at the age of 15 with HF aspergers, and another with an autoimmune disorder. For my daughter we definitely have toxins in the body.

We continue to control seizures with nutrition. I look forward to following your blog.
Thank you for taking the time for posting such a thoughtful post.

I think for some of us we can switch out the words autism for seizure disorder/epilepsy as many of the symptoms are the same. The directions used that are showing positive results in those with autism, are also showing results in those with seizure disorders. Unfortunately Autism has been the poster child. Epilepsy is still finding it's voice.

Have you ever had their glutathione and amino acid levels checked?
 
Lavinco and friends--

My son was unvaccinated and still regressed into autism at the "usual" age...around 18 months give or take a few months.

He may have been exposed to lead (old house) and/or mold and/or lyme. Also around this time he was given TYLENOL...which is a major depletor of glutathione. He has the genotype where he is not able to get rid of mold and lyme biotoxins (charcoal helps with this although I have not seen a change in the last year of giving charcoal frequently).

He has some type of "mystery bug" that has been found on his red blood cells. The lab is unable to identify what it is. They are working on trying to ID it but...until then, not sure how to treat it. I wonder if it is the cause of his seizures. Many people with lyme have this on their cells. It may be some type of co-infection.

I am totally with you on the glutathione front. I have been giving my son Immunocal (whey protein) which is clinically proven to raise GSH levels. I have not seen any difference with this either. We have tried other GSH supplements...I don't really think they work.

I am interested in finding out if anything shows up on his MRI (scheduled for mid-January). Typically, autistic children do not have any abnormalities on the MRI.

My son was on a hypoallergenic formula when he was a baby. Turns out, the company decided to add extra methionine (an amino acid) which can be neurotoxic at high doses. I think my son may have been poisoned by this while he was using the formula, but I can not prove it. Do some research on homocysteinuria. I spoke with Harvy Mudd at the NIMH and he even thought this formula may have damaged my son's brain in some way (basically said that if he was an expert witness in court he would testify that it damaged his brain). UGH!:cry:

:ponder:
 
Lavinco and friends--

My son was unvaccinated and still regressed into autism at the "usual" age...around 18 months give or take a few months.

He may have been exposed to lead (old house) and/or mold and/or lyme. Also around this time he was given TYLENOL...which is a major depletor of glutathione. He has the genotype where he is not able to get rid of mold and lyme biotoxins (charcoal helps with this although I have not seen a change in the last year of giving charcoal frequently).

He has some type of "mystery bug" that has been found on his red blood cells. The lab is unable to identify what it is. They are working on trying to ID it but...until then, not sure how to treat it. I wonder if it is the cause of his seizures. Many people with lyme have this on their cells. It may be some type of co-infection.

I am totally with you on the glutathione front. I have been giving my son Immunocal (whey protein) which is clinically proven to raise GSH levels. I have not seen any difference with this either. We have tried other GSH supplements...I don't really think they work.

I am interested in finding out if anything shows up on his MRI (scheduled for mid-January). Typically, autistic children do not have any abnormalities on the MRI.

My son was on a hypoallergenic formula when he was a baby. Turns out, the company decided to add extra methionine (an amino acid) which can be neurotoxic at high doses. I think my son may have been poisoned by this while he was using the formula, but I can not prove it. Do some research on homocysteinuria. I spoke with Harvy Mudd at the NIMH and he even thought this formula may have damaged my son's brain in some way (basically said that if he was an expert witness in court he would testify that it damaged his brain). UGH!:cry:

:ponder:

Immunical contains the casein protein that many autistic children are allergic to, so if he is too, this could be fuel to the fire.

In addition, monosodium glutamate (MSG) is the salt from glutamate. MSG is in foods everywhere and often hidden as yeast extract, hydrolyzed protein, natural flavors and other names. If he has a sensitivity to this, it may cause problems. MSG is sometimes extracted from gluten, but more so now from seaweed.

Glutamate can have a direct affect on the NMDA receptors and an over supply of glutamate can cause too much excitotoxicity. I saw a study in PubMed not too long ago that showed that high glutamate levels can trigger seizures in some mice. It's buried in my sea of links somewhere, but you may be interested.

Have you had your son tested for Lyme disease? if so, was it the elisa test or western blot? I heard that western blot it more accurate.
We did an elisa test on our daughter and it came back negative.
 
My son was GFCF when he regressed (brother allergic to dairy and wheat). My son actually became allergic to rice and potato, could never eat corn or soy and his diet became very limited. I switched him to some dairy and gluten (pizza) and took out the rice and potato and he got better (sensory issues decreased, digestion got better, skin cleared up).

Because of my son's food allergies, he does not eat anything but simple foods...organic if possible...carrots, apples, strawberries, lettuce, broccoli, chicken, beef, lamb, pork (single ingredients)., etc. I don't think he gets MSG with a diet like this.

He has positive bands for lyme but the Igenex and CDC interpretation was negative. I think a LLMD would say he has lyme. I used herbs (Zhang protocol) to see if we could get a herx...NOTHING. Tried abx...nothing. We did the Fry test for co-infections (babesia, bartonella, erlichia)...nothing. We did the Fry smear and this did come back positive for the mystery bug. No indication of what it is or how to get rid of it.

So far, no one has been able to figure him out. After 8 Years of trying this, that and the other thing (EVERYTHING), I am getting frustrated.
 
My son was GFCF when he regressed (brother allergic to dairy and wheat). My son actually became allergic to rice and potato, could never eat corn or soy and his diet became very limited. I switched him to some dairy and gluten (pizza) and took out the rice and potato and he got better (sensory issues decreased, digestion got better, skin cleared up).

Because of my son's food allergies, he does not eat anything but simple foods...organic if possible...carrots, apples, strawberries, lettuce, broccoli, chicken, beef, lamb, pork (single ingredients)., etc. I don't think he gets MSG with a diet like this.

He has positive bands for lyme but the Igenex and CDC interpretation was negative. I think a LLMD would say he has lyme. I used herbs (Zhang protocol) to see if we could get a herx...NOTHING. Tried abx...nothing. We did the Fry test for co-infections (babesia, bartonella, erlichia)...nothing. We did the Fry smear and this did come back positive for the mystery bug. No indication of what it is or how to get rid of it.

So far, no one has been able to figure him out. After 8 Years of trying this, that and the other thing (EVERYTHING), I am getting frustrated.

I understand your frustrations. Hang in there. It sounds like you are well educated by experience and I'm sure much research. I know that some autistic kids are also allergic to the starches in potatoes and rice, so that is good that you noticed that.

One other thing to note is that people with low glutathione levels do not tend to absorb more than 10% of any type of off the shelf glutathione raising supplement.

The reason why may be complex and still unknown, but with some understanding. Remember that glutathione is naturally produced, or bound I should say, in the body by 3 essential amino acids. They are glutamic acid (aka glutamate), glycine and cysteine. When these three amino acids bind, they form the sticky substance known as glutathione.

Here's the confusing part. Because glutamate and glycine levels can tend to build up on the high side on autistic kids, this means that it's not a lack of the right amino acids to produce the glutathione, but instead something is causing them not to bind and instead buildup.

A very safe and effective way to raise glutathione levels and balance glutamate, glycine and cysteine levels is DMSA chelation therapy. Even 1 round could last 1.5 months. A common treatment may included 7-10 rounds for heavy metal poisoning.

You have to be careful to credit a negative mercury and/or lead, and/or bismuth, high copper, etc metal plasma (blood) test because metals only float around in the blood for so long before they finally accumulate in the brain tissue and other organs.

Cysteine is what carries metals around the body, but without the help of glutamate and glycine formed as glutathione, the metals cannot be excreted through the hair, skin and other exit areas for metals.

Have you ever tried DMSA. Even 1 round would tell you if your child truly has metal poisoning. The best time to get a true positive heavy metal test is during chelation therapy.

Glutathione levels can cause the body to become weak and leave it susceptible to other problems that mimic many things.

Is your son still regressing?
 
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Lavinco--
Cysteine is the rate-limiting amino acid in the formation of GSH. That is why I also use Immunocal--it supplies the body with cysteine so that GSH can be made.

My son has done chelation in many forms...natural, EDTA, DMPS and DMSA. I have to be careful with the sulphur-containing chelators as my son tends to bruise easily if he gets too much sulphur. He is CBS +- (if you follow the Yasko genetics stuff). He seems to do best on EDTA. I wonder if it is because lead might be more of an issue for him or if it has something to do with breaking down biofilm.

My son is not still regressing. He just is making painfully slow progress. I would not say he is severely autistic...just moderate. It would be nice if he would make more progress in learning and socialization/communication. I think he knows more than he is able to communicate.
 
Lavinco--
Cysteine is the rate-limiting amino acid in the formation of GSH. That is why I also use Immunocal--it supplies the body with cysteine so that GSH can be made.

My son has done chelation in many forms...natural, EDTA, DMPS and DMSA. I have to be careful with the sulphur-containing chelators as my son tends to bruise easily if he gets too much sulphur. He is CBS +- (if you follow the Yasko genetics stuff). He seems to do best on EDTA. I wonder if it is because lead might be more of an issue for him or if it has something to do with breaking down biofilm.

My son is not still regressing. He just is making painfully slow progress. I would not say he is severely autistic...just moderate. It would be nice if he would make more progress in learning and socialization/communication. I think he knows more than he is able to communicate.

Keep us updated. You can follow me on Facebook at facebook address /jeramie.curtice
 
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