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ASD, Seizures, and Eosinophilic Esophagitis: Could They Be Thiamine Related?

Published on January 2, 2024

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My 18 year old son has ASD and has had a seizure disorder since he was 6 years old. He has tried virtually all anti-epileptic drugs. Either the side effects were unbearable, they made his seizures worse, or had no effect on his seizures. He was diagnosed with Eosinophilic Esophagitis. He is underweight and of short stature, and always has been. Mitochondrial tests show that complex II is working at 26% capacity. He is also autistic. He has tested positive for folate receptor antibody.

Over the years he has done several rounds of antibiotics, including Flagyl, which I have since learned that it significantly depletes the body of thiamine. He has also taken several rounds of Diflucan, Azithromycin, Vancomycin, Augmentin, Amox for various issues including candida, clostridia, gram negative gut bacteria, etc.

He is currently on Lamictal and just started Briviact for seizures. The Briviact causes anger and aggression issues. He currently deals with OCD tendencies. He was recently found to have bone density of 2.8 standard deviations below normal. This falls in the range of osteoporosis, but he has not been diagnosed with it because of his age.

He eats fresh and a lot of dried fruit, meats, raw and cooked greens, white rice, lots of cooked veggies, eggs. He also takes Lipothiamine 100 mg/day, Magnesium 550 mg, a multi-vitamin, calcium, vitamin D, and K, all at the direction of his doctors.

Childbirth and Infancy

M was born on July 9th 2005 7lbs 9oz. He was full-term. I had high blood pressure at 41 weeks and labor was induced. He would not drop into position and he became distressed and so was delivered via cesarean while I was under general anesthesia.

He spent 4 days in the NICU because he aspirated meconium and would not latch to feed. While in the NICU, he was administered antibiotics. He was formula-fed, not breast-fed.

As an infant, the large size of his head was somewhat of a concern for the pediatrician. He was administered vaccinations according to the CDC guidelines for the first 12 months. He had infantile spasms off and on. He spiked a fever for every vaccination. Tylenol was administered. He received 3 doses of flu vaccine, accidentally, within 3 months.

He did not sleep well, and still doesn’t.

Initially, he was very precocious. As an infant, he would put puzzles together that were for much older children. He would complete sorting activities that were well beyond his age range. He did not babble and eye-contact was fleeting.

After his 18 month vaccination, he lost just about everything within 2 weeks. After these vaccinations, he couldn’t do his puzzles, bring food to his mouth, smile, couldn’t stand to be read to when he previously loved to be read to. He also developed a sensitivity to light and sound and cried a lot.

At 24 months, he was diagnosed with profound autism.

PANDAS/PANS and Eosinophilic Esophagitis

At age 10 years, he abruptly lost skills again and it was thought he had PANDAS/PANS as he had several strep infections treated with antibiotics. He did a several month long courses of Augmentin or Azithromycin to treat PANDAS/PANS. He had a severe trauma at age 11. He was horrifically abused by a school employee.

He has always been of short-stature nearing 5th percentile for height, and slightly overweight for his age, until age 14 when he started having symptoms of Eosinophilic Esophagitis. He was diagnosed with EoE at 15 and has struggled to keep his weight high enough as he dealt with the intense pain, fatigue, and esophagus issues with this condition. He is currently taking Dupixent for his Eosinophilic Esophagitis as the PPI and Budesonide slurry were not addressing the issues. So far Dupixent is allowing him to eat. His diet remains very restricted due to having so many trigger foods and he has almost no appetite.

He eats a lot of dried and fresh fruit. He loves greens, raw and cooked. He also eats meat, white rice noodles. He eats mostly an organic diet. He does occasionally enjoy candy.

Seizures

He developed seizures at age 6. These were controlled for a while on Depakote, but the side effects of Depakote were too much for him and so we had to stop. His seizures are now not controlled. He has 1-2 tonic-clonic seizures per week, plus several staring spells all throughout the day. Recent EEG showed abnormal spikes and discharges in the frontal and temporal lobes. It indicated his seizures involved many places on his brain. Brain surgery was being considered for seizures at this time, but ruled out as an option due to the nature of his seizures.

He has failed several other seizure meds including Vimpat, Zonegran, Aptiom, Topamax, Onfi, and others. He is currently on Lamotrigine and Epidiolex for his seizures. He also takes trazadone and gabapentin for sleep, although these do not consistently help him sleep. He is so consumed by fatigue and can hardly get out of bed even to walk across the room. With tons of encouragement he can do brief periods of school work. The meds cause him to lose focus and become frustrated. He seems to almost always be lost in a fog and unable to participate in basic conversations without losing focus or becoming too exhausted to continue. Each seizure will cause him to be in bed for 2-3 days. He has fallen many times going into a seizure and is now afraid to leave the safety of his bedroom. He will come out, but rarely.

He has intermittent issues with nystagmus. He had a bad case of COVID 2 years ago, which caused clusters of seizures and constant nystagmus.

He has an exaggerated startle response.

Despite It All

M is a sweet young man. He is brilliant. He loves animals. He tells everyone he sees that he is so happy to see them. He is working with a local legislator on how to improve rights for non-speaking people, especially in the court room. He is completing all of his high school courses at home with straight A’s and he is a published poet.

He does not speak, but he communicates by pointing to letters on an alphabet board. This is a skill that took him years to learn. He communicates at an age-appropriate level or higher. He is working, slowly, toward a standard high school diploma.

Postscript

Based upon what I have learned from this website, I discussed thiamine with our physician. It turns out, she heard Dr. Lonsdale speak years ago. She recommended 50mg of Lipothiamine. The entire time he was taking it, he had no seizures. I was not sure that it was thiamine or the meds until we ran out for about a week. The seizures returned, but as soon as we resumed the Lipothiamine, they disappeared again. He has been taking it again and now it has been 2 weeks without seizures. I don’t want to get my hopes up, but it could definitely be a piece of the puzzle. Are there others out there with similar experiences?

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Reducing Brain Inflammation with Vitamin B6

by Chandler Marrs, PhD

Published on September 16, 2014

19195 views

Among the many symptoms of vaccine adverse reactions is brain inflammation, often considered idiopathic or of unknown origins. There are a number of potential culprits underlying vaccine related brain inflammation, including the virus vectors, the neurotoxic adjuvants or the cocktail mistakenly presumed inert ingredients that accompany any vaccine. No matter the cause, however, once inflammation is unleashed within the central nervous system, the inflammatory response itself can become self-perpetuating, initiating secondary pathologies that are chronic, progressive and neurodegenerative.

Chronic brain inflammation, like inflammation in the rest of the body, is now considered one of the leading causes of disease. In the brain, chronic inflammation is believed to lead to Alzheimer’s, dementia and Parkinson’s, while chronic inflammation in the body is connected to heart disease, type 2 diabetes, depression and a myriad of autoimmune diseases. At the center of all inflammatory diseases are dysfunctional mitochondria that, as regulators of the cell survival and number of other functions, control immune reactions – inflammation. Mitochondria are highly susceptible to damage from pharmacological and environmental toxicants and inextricably dependent upon dietary nutrients for proper functioning. When toxicants attack mitochondrial pathways and/or nutrient depletion diminishes mitochondrial functioning, mitochondria activate the immune system and spur inflammatory cascades; cascades that can be stopped only if the exposures are removed and the nutrients restored.

In the brain, neural mitochondria and microglia (brain immune cells), regulate inflammation. Like the mitochondria, these microglia are highly dependent upon dietary nutrients. As we have written previously, the B vitamins are particularly important for central nervous system functioning. New research finds that vitamin B6 is a key regulator of brain inflammation.

Vitamin B6 and Brain Inflammation

Vitamin B6 (pyridoxine >peridoxal 5’ – phosphate) is a necessary co-factor in over 100 enzymes. It is critical for the catabolism (breakdown) of the essential amino acid tryptophan. Tryptophan is required for serotonin (well-being and GI motility) and melatonin (the sleep hormone) synthesis. Disturbances in tryptophan catabolism not only lead to disturbances in neurotransmitter activity, but also, can lead to cell death or apoptosis, in vital brain regions, like the hippocampus (learning and memory), basal ganglia (movement, motivation, intention) and in the cerebellum (motor control and balance).

When all is working well, tryptophan serves as a substrate for serotonin and melatonin. Excess tryptophan is degraded resulting in the by-products nictonic acid and nicotinamide adenine dinucleotide (NAD+) – or as most of us recognize, niacin, vitamin B3. Niacin is an essential nutrient in many physiological functions. Loss of niacin metabolism from this pathway can lead to significant disease, including, Pellagra, a disease characterized by scaly skin lesions, delusions and confusion. In addition to a loss of niacin synthesis, when vitamin B6 is deficient and the tryptophan pathway is disturbed, the incomplete degradation of tryptophan produces several metabolites that are neurotoxic, including one called quinolinic acid.

Quinolinic acid is a potent and self-perpetuating neurotoxin when unopposed in the brain. It generates ROS (reactive oxygen species indicative of mitochondrial oxidative stress and damage) and over-activates NMDA glutamate receptors (the brain’s primary excitatory neurotransmitter) to the point of apoptosis (cell death), all the while inhibiting brain astrocytes’ ability to clean up the excess glutamate. Once that cycle becomes initiated, quinolinic acid potentiates its own release and that of other neurotoxins, ensuring continued brain inflammation and damage.

With the appropriate vitamin B6, quinolinic acid is not the final product of tryptophan catabolism, NAD+ or niacin is, and any damage initiated by quinolinic acid as a natural by-product within this pathway is offset by two neuroprotective factors, kynurenine and picolinic acid. Vitamin B6 is critical for the kynurenine aminotransferase and kynurinase enzymes; enzymes that lead to neuroprotective compounds, kynurenine or picolinic acid. Kynurenine blocks the cytotoxic effects of quinolinic acid by blocking the NMDA receptor, making it unavailable to quinolinic acid, while picolinic acid is the primary metal chelator (remover) in the brain (likely critically important in post vaccine reactions). In other words, vitamin B6 controls the balance between inflammation and anti-inflammation within the brain and the body.

How do We Know Vitamin B6 is a Neuroprotectant?

Well, we’ve actually known this since the 1970s (perhaps earlier) when work on the kynurenine pathway began. Somehow though, it wasn’t recognized again until the 1990’s and has only recently become prominent over the last decade as connections between environmental and pharmaceutical toxicants and gut microbiota and mitochondrial damage are revealed.

Several studies have emerged over the last decade showing the importance of vitamin B6 (and other B vitamins) in systemic and brain inflammation. Defects in vitamin B6 metabolism are linked to seizure disorders resistant to traditional anticonvulsants but remediable with Vitamin B6. Vitamin B6 reduces brain atrophy in Alzheimer’s patients. Low vitamin B6 is believed to play a key role in the oxidative stress associated with Huntington’s disease. One of the more interesting studies involves preventing the hippocampal apoptosis associated with bacterial meningitis using vitamin B6.

Bacterial meningitis is a life threatening disease associated with high mortality and morbidity. Of those patients who survive, up to 50% suffer serious neurological impairment including: hearing loss, seizures, cognitive decrements and sensory-motor deficits. The bacteria attack cortical and hippocampal regions of the brain. Hippocampal cell death is associated with learning and memory deficits. In an experimental version of bacterial meningitis with rodents, researchers tested whether vitamin B6 supplementation could prevent the hippocampal apoptosis by moderating the tryptophan pathway towards the B6-dependent kynurenine and picolinic metabolites versus the neurotoxic quinolinic acid. They were successful. Vitamin B6 supplementation reduced brain inflammation and hippocampal apoptosis by up-regulating the neuroprotective factors controlled by the tryptophan – kynurenine pathway. An impressive result reached simply via vitamin supplementation.

Final Thoughts

Tryptophan metabolism and the kynurenine pathway are implicated in disease processes where inflammation is prominent. Vitamin B6 may be critical to maintaining the appropriate balance between inflammatory and anti-inflammatory immune reactions. With modern nutritional deficits (high calorie, low nutrient foods), commercial agricultural practices (glyphosate doused crops are nutrient poor), estrogenic medications and environmental exposures (estrogens inhibit vitamin B6), it entirely conceivable that many of us are vitamin B6 deficient and, as a result, functioning with a constant level of inflammation. Vitamin B6 supplementation, along with the other B vitamins might be warranted.

For those individuals suffering from brain inflammation mediated by disease, medication or vaccine adverse reactions, vitamin B6 might just reduce the inflammation cascades and improve quality of life. Given its direct impact on tryptophan metabolism, vitamin B6 ought to be considered critical for brain health.

A Ruined Life from Gardasil

by Hormone Stories

Published on August 14, 2012

9565 views

This was submitted by Tracy Wolf, the mother of Alexis who has suffered severe side effects from the Gardasil vaccine, this is her story. We thank Tracy for sharing.

In the spring of 2007, Alexis was a happy, shy, and well-adjusted 13-year-old, young lady. She had been diagnosed with type 1 diabetes in January of 2006, but responded to this in the most positive way. Her doctors were so impressed with how well she dealt with it that they recommended she be put on the insulin pump. Through all of this she worked hard, made the honor roll at school and was educating her fellow students about Type 1 diabetes. Her grandparents wanted her to visit them in Germany, but we were reluctant to do this because of the diabetes. Her doctor felt that she was so responsible and mature compared to other kids her age with Type 1, that she should be allowed to go.

In March of 2007, I took Alexis to see her pediatrician for a wellness check up before her trip to Germany and she received her first Gardasil injection. Alexis asked for it to be given in her leg. We did not notice any side effects at that point. In June, we returned to the doctor’s office right before Alexis left on her trip for the 2nd of 3 injections for Gardasil. Again there were no immediate side effects. A couple weeks later she left for Germany. While she was in Germany most everything went well. Her grandparents said she did act a little strange and out of character for her, but nothing they thought to be too serious.

When Alexis arrived back home from her trip, I noticed that she did not experience jet lag like we all had the last time we all went to Germany. Also, I thought it was odd that she didn’t (or couldn’t) cry when she was told that our 12-year-old dog had passed away while she was gone because she had always been a very sensitive child. As time went on more and more strange behavior, very unlike Alexis, started. She was getting in trouble at school and was unable to concentrate or retain anything she learned. I was taking her to every kind of doctor I could think of, but every test came back normal. Things progressively got worse. At this point her personality had changed 100%. She would go through bits of rage and she would scream at me and call me names and tell me how much she hated our family and me. She said she wanted to be taken to an orphanage and be adopted by another family. At this point doctors and school staff were telling me that Alexis was acting out and testing her boundaries. I argued with all of them. I knew there had to be something medical going on, although doctors and the school were not listening to me. She started having massive panic attacks where her heart would pound so hard you could see her chest moving. Sound and movements bothered her. She would talk about “things looking funny or strange.” she said that peoples faces made her sick to her stomach including people on TV and everyone around her. Often, she would look around as if she didn’t know where she was.

Soon I realized that she was not sleeping at all. She stayed up in her room writing notes all night. The notes were nonsense. She became obsessed with food and would eat anything she could get her hands on while we were asleep. I didn’t realize this at first because she was still being pretty responsible with her diabetes and giving herself the insulin she needed to correct for the food she was eating. One day she stuck her tongue out at me and I noticed a huge bump on the side of her tongue. She had no memory of how the bump got there and it was so big it looked like she had bit off a chunk. Looking back now, I think this is when the seizures started in her sleep.

I took her back to see her endocrinologist and at that point her doctor suggested that we see the in office psychologist thinking that maybe she was having issues being a diabetic. I told her that I really didn’t think it had anything to do with her diabetes, but she wanted us to try. On the second visit with her psychologist, the doctor came to the conclusion that Alexis had been sexually molested while she was in Germany. I was so upset and asked her why she thought this. She said that Alexis talked about seeing nudity in Germany (hello, have you ever been to Europe?) Nudity is everywhere in Germany and I talked to Alexis about this for many hours and on different occasions. Alexis swore to me that nothing like that happened in Germany. I spoke to her grandparents about it and they said that nothing like that happened. Seemed like the only one that believed that really happened was the psychologist (months later she apologized for being wrong, but at that point every doctor after that was subjected to her notes. I was labeled as a “mother in denial”). We were sent to other psychologist and psychiatrist. The only thing they knew what to do was throw anti-psychotic medications at her. Nothing worked, she only got worse. She started throwing up everything she ate, and then couldn’t wait to eat more.

By January 2008, I had taken her in to see her pediatrician again and she was given the 3rd shot in the Gardasil series. Things got much worse after that. Two weeks later we were back at her pediatrician’s office because she had lost five pounds in a week, was throwing up a lot, and not sleeping at all. The doctor sent us to the hospital. Alexis was admitted and spent the next four days getting blood tests, MRIs and a CT scan. Everything came back normal. I was told, once again, that nothing medical was wrong with my daughter. They sent her to Kaseman Behavioral Unit. There she was treated like an animal. They put her on many more anti-psychotic medications, none of which helped her sleep or stopped the vomiting. They told her that if she threw up her food she would not get anything else to eat. They seemed to have no idea how to deal with her diabetes and I had to constantly show them how to deal with it. She was not allowed to be around any of the other children and was told she could only be in her room or walk up and down a short hall. They gave her a bucket for the vomit and on the fourth day two nurses witnessed her eating her vomit from the bucket. After five days of being admitted, they said she was stable and sent Alexis home. That day she was not able to keep any food down and she did not sleep at all that night. The notes were lined up on the banister the next morning when I woke up.

The next day, we were told to take her to a new psychiatrist. We did and the doctor was almost in tears. She had no idea why we were sent to her. She could see right off the bat that she would not be able to help Alexis. She told us that she thought we were getting the run around. We went home and called her pediatrician and begged her to help us. She was reluctant but said she would make some calls and get back to us. We were able to get her into the Children’s Psychiatric Hospital at the University of New Mexico Hospital. This was on a Friday night and their psychiatrist would not be in until Monday so they just tried to focus on getting Alexis to sleep. They gave her high doses of Trazadone and she still didn’t sleep. The next morning I went to see her and she was sitting in a chair in the front room and she was slumped over and drooling and moaning. When I walked in, she slowly raised her head and almost in slow motion said, “Hi mommy.” I got her up and took her to her room and tried to get her to lie down and try to sleep. She started dozing off and I thought Yeah, she is going to sleep! But within five minutes her face clenched as if she were in pain, her eyes twitched, and her mouth filled up with saliva. They noticed right away that Alexis was not going through behavioral issues. When the doctor showed on Monday morning I told her exactly what was happening and while I was telling her, Alexis had another “spell.” The psychiatrist noticed right away that she was most likely having seizures. An EEG was done and they found out she was in fact having seizures that were all concentrated in her frontal lobe, the part of our brain that control our personality. She had been having seizures some time and no one noticed, until just then!

Alexis spent the next six months at UNMH. They did every medical test on her that they could come up with: EEGs, CT scans, MRI’s, 2 spinal taps, muscle biopsy, blood tests were sent out all over the United States, plasmapheresis, IVIG, and then some. Everything came back normal. They determined that she was exposed to a virus and her body made antibodies to attack the virus. However, she had not been sick and had not shown any symptoms of having a virus or even the sniffles. The only virus she had been exposed to was the Gardasil shots. They also determined that she suffered brain damage because of the seizures. She now is testing at a 4th grade level and still to this day is unable to attend school. She has seizure activity every day and night, almost constantly. She is in constant pain and no medication seems to help. Every day more symptoms pop up. She has numbness in her arms and legs, headaches, horrible pain, loss of bladder control (now she has to wear adult diapers), constipation (and when she is able to have a BM they are the size of a grapefruit and plug the toilet every time), vision problems, memory loss, brain fog, chronic fatigue, leg cramps, back pain, dizziness, she repeats the same things over and over again with no memory of having said it a million times, she is unable to retain anything that is said to her or that she sees, rapid heart rate, high blood pressure, and more

In 2009, she spent four days in the local Presbyterian hospital for high heart rate and super high blood pressure. All the tests came back normal. In November, I took her to Barrows Neuro in Phoenix. She spent six days attached to an EEG machine and under went another MRI. All the doctors were baffled and don’t know what to do. Her neurologist is very experienced and has never seen anything like what Alexis is going through.

We are all heart broken that a girl who showed so much promise three years ago, had her life as we knew it taken away. She will never be the same. We are pretty much out of options and our next step is getting an adult neurologist to look over her case to see if she would be a candidate for Vagus Nerve Stimulation or VNS therapy. This would mean having surgery to implant a device in her chest that would send impulses to her nerve endings in the base of her skull to try to stop the seizures. Alexis is scared and does not want to have this done, but I feel we have no other choice because none of the anticonvulsants are working.

Lawyers have refused to include Alexis in their class action lawsuits against Gardasil because her first symptoms were more “behavioral”. We now know that her behavior change was due to seizures. I spend most of my time trying to get Alexis special services that our government provides to people who have traumatic brain injuries, but I was told Alexis is on a waiting list of over 47,000 people in New Mexico and it could take up to 10 years for her to receive any benefits because there is no money to support the people in need. This is such a horrible nightmare that I wish we could all wake up from, but unfortunately this is real, very real.

Thank you for taking the time to read Alexis’ story. Some of these things are very hard to talk about and probably hard to read as well, but we all need to know what is happening to our children and be able to make educated decisions.

Alexis will be featured in the upcoming documentary One More Girl.

To read an update on Alexis’ condition: A Day in the Life of Alexis Wolf: Six Years After Gardasil.

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seizures

Childbirth and Infancy

PANDAS/PANS and Eosinophilic Esophagitis

Seizures

Despite It All

Postscript

We Need Your Help

Related posts:

You might be interested in

Vitamin B6 and Brain Inflammation

How do We Know Vitamin B6 is a Neuroprotectant?

Final Thoughts

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Participate in Research

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