Nystatin Log: Our Latest Autism Symptom Hope

Here goes our 21 days of prescription Nystatin anti-fungal liquid. Still looking for the next one thing that might make a very noticeable change and unlock another door for G.

Day 1: 2/18/20: G started Nystatin 3 times a day

Through the next few days he started putting his his head upside down on the pillow in his crib. (Yeast die-off signs?) Still grinding teeth.

He started making loud short screams at times, unlike ever before. Kind of like quick yelps here and there. (Yeast die-off signs?)

As he falls asleep for a nap or at night, he will do this short scream a few times as well. It’s really loud.

Day 2: 2/19/20 —

Day 3: 2/20/20 —

Day 4: 2/21/20: G started touching the walls or the tables, as if he sees something like a pattern, and stares at it a while while kind of scratching the surface with his nails. He never does this. Still grinding teeth.

Day 5: 2/22/20 —

Day 6: 2/23/20: Took G on a long car trip with his older brother (1 hour 30 minutes each way) He did exceptionally well, was never mad or sad, and contently looked out the window. 

He still did not want to walk when we got to our destination, because it was so windy, but he tolerated being in the stroller for a long time, as usual.

The trip home was wonderful and quiet most of the time. There was hardly any stimming or stereotypy. He also did not get upset and cry when I didn’t play the songs he usually wants in the car. Instead I just played a lot of relaxing music that he and his brother could both enjoy. I was overall just really surprised by the trip. 

When we got home he ate and went for a nap. He was in the crib at around 4:20 and did a lot of the quick screams. Put his head upside down many times. Fell asleep at 5:45, grinding teeth, and woke him up at 6:30.

It really seems like he is having symptoms of yeast die off. So I started reading about how to make gluten free and yeast free bread again. The bread he always eats (Franz multi-seed gluten free bread) is made with yeast. Also want to finally get rid of the Goldfish. Finding a yeast free cheese cracker is difficult. I like that he eats something that is crunchy – if we take crackers away, everything he eats is very soft. I’m afraid he would reject new foods in the near future that are crunchy if he forgets what it’s like to chew that way.

Day 7: 2/24/20: G slept nine hours last night. He had a great, calm morning. When he woke up, he was putting his head upside down on the pillow. Then as usual when we go to therapy he tries to hide his eyes under his beanie or behind his hands, and walk with his eyes covered up, as if it’s too bright outside or he doesn’t want to look where he is going. He also leans on me, falls on me, like being drunk. It’s kind of like when he doesn’t really want to go somewhere, but is just being agreeable, he acts wobbly and puts his face into my leg or into my jacket and walks super slowly. When we finally got downstairs at therapy, he put his backpack on the hook and began to walk normally again and not hide his eyes anymore. At home in the afternoon he was being frustrated a few times about wanting Goldfish instead of puree. But when he went to the crib at 4, he was asleep for his nap by 4:30.

Day 8: 2/25/20: G is still doing that “drunk” kind of thing, hiding into my legs, not watching where he is going, and laying and climbing in different ways. But there’s something different about him again today besides this wobbly, explorative stuff. He is more focused and calm, less stereotypy until he watches videos. Napped today and did not want to wake up at all, as usual but he was even more of a little log. When he finally got up, I noticed his hands were really cold and almost damp.

Day 9: 2/26/20: Still grinding teeth. Limp noodle G is even more so. He walks like he is wet spaghetti. I finally figured out how to describe it – he is mostly doing it during transitions. If he has to go downstairs, upstairs, get ready to go to the car, or go to the bathtub, he becomes limp as he walks, it’s hard to get him to walk, and he wants to hide his entire face under his hat or my jacket. Afternoon update: Therapist who was with him for 2.5 hours during the afternoon said he was very wobbly and laying on her. The other therapists this week haven’t noticed it so today must have been pretty intense for that behavior. She said his focus time was short the later it got in the afternoon. When he got home he was very jumpy and shook his head fast a lot (like the saying no motion). He never shakes his head.. Later he took a nap but it was very short and he woke up crying, then he was screaming and wanted water. I emailed one of his doctors and they said to stop the Nystatin. I asked them if they think the yeast died off already? Still waiting for reply. If all these wobbly symptoms were temporary, I would want to complete the 21 day treatment and then stop. But if did keep acting like these for the next few days, and shaking his head, and throwing his head back into the pillows, I would start to wonder myself if I should stop. I can’t believe Nystatin is having such a big effect on his behavior. He is still so happy and loving, and never angry, just a few screams here and there, but this strange behavior must mean something.

Day 10: 2/27/20: First day without any doses of Nystatin: He was definitely less wobbly and still very calm. He had a lot of trouble hanging up his backpack and jacket at therapy. When I picked him up, his therapist said he was not wobbly or leaning on anything today. He had a great day and almost ate mashed potatoes. At home he was leaning into me and hiding again on the way to the front door. Put pau d’arco and q/b into his lunch. At naptime, he went into the crib around 4:10 and at 5:25 was still jumping and putting his head into the pillow with his bottom up in the air over and over, looks like he is squeezing his head into the pillow. Grinding teeth often but not all the time. The different part about today’s nap is that he is holding his head on the pillow for a minute at a time with his bottom in the air. He never does it for longer than a few seconds before switching up positions. Update: he did not fall asleep, took him out of the crib and it turned out that he had a #2. It’s a really fluffy kind, and he also did it before nap. So I guess he couldn’t hold it.

Day 11: 2/28/20 Today G was still acting very sleepy. Mimi fed him downstairs for breakfast and he was laying down on the couch and could barely eat. Went to therapy and he was hiding his eyes, not walking, and very spacey. Asked him to put his backpack on the hook and he was just looking off toward the walls and the windows. When I picked him up he was better. Lunch was quercetin/bromelain, pau d’arco, leucovorin and 1/4 tsp beef gelatin. At home we ate dinner at the table on a chair, and he stayed the whole time and did not get up. He asked to get up three times by pointing into the kitchen but did not get mad when I told him no. Bath time was really amazing and funny. He was putting the bathcloth on his tongue over and over, I think he feels the tickles. He is exploring his mouth more than ever. I think it’s a good sign he might talk. Many sounds and babbles tonight. Still grinding teeth. It looks like tomorrow he might be almost out of his spaceyness, because tonight was pretty close. He had pau d’arco, quercetin and bromelain at lunch. Have not heard back from doctor about when to try Nystatin again or what to do.

Day 12: 2/29/20: G was much better today and not acting very sleepy at all. More active, and back to normal but better than normal. No Nystatin, quercetin/bromelain or pau d’arco today at lunch. Still grinding teeth. Took two hours to take a nap today.

Day 13: 3/1/20: G slept very well. He had a calm and active morning. Went to the park and was able to get him to come out of the stroller and touch flowers and numbers. Very happy mood. Gave him one dose on Nystatin at lunch, quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, but no pau d’arco. Went for a nap at 3 and fell asleep 4:30. Naps are still taking so long but think he needs them.

Day 14: 3/2/20: G had a good sleep and a good day at therapy. He did try to grab the therapist’s face a few times when he was frustrated. At lunch he had quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, and pau d’arco. He did not take a nap today, he was too alert and awake. He was very happy to come out of the bed and was running around. Just very happy in general.

Day 15: 3/3/20: Gavin woke up at 5:30 AM and was not in a great mood. Today was not very great. Lunch was leuco, pau d’arco, q/b, cs in water before nap. He did take nap. Night was better. Tired today, short update.

Day 16: 3/4/20: G had a good morning, had to wake him up for breakfast He went without me into the clinic today. When he got home, I decided enough is enough with his teeth brushing. I sat him down and got the toothbrush and said “We’re gonna brush your teeth now.” I brushed them all over and he tolerated it. I felt bad that his gums started bleeding by his front teeth. He really needs it. Lunch was calcium/d, leuco, q/b, cs in water. He went for a nap at 4:30. Grinding teeth.

Day 17: 3/5/20: G had another good sleep and slept past wakeup time again and had to be woken up. He wa super happy and went into the clinic again without me. He gave me a great kiss goodbye and walked right in. They said he had a good day, high energy. It’s 4:50 now and he is trying to nap. (Fell asleep 5:30.) I have felt pretty tired lately and a little lost on what to do next. One of my oldest friends told me today that her son was diagnosed today with high functioning autism, Asperger’s. I just couldn’t believe it. I didn’t want to say “sorry” because there’s nothing to be sorry about. It’s just a struggle sometimes with any level of autism. I told her I am here to talk and that now that she knows it will be easier to figure out what’s next. Lunch was leuco, q/b, cs in water. Grinding teeth less. Took a preschool workbook into the bed with him. That was interesting. Switched it out for Owl and he didn’t cry about it.

Day 18: 3/6/20: G woke up at 6, had great day school, ate all of his food for the first time in a year, had to leave early because a therapist left, went to bed at 3 and fell asleep at 4. No supps in lunch except leuco. Less grinding of teeth.

Day 19: 3/7/20: Forgot to write today, just had a busy day.

Day 20: 3/8/20 Today G slept in a bit because of daylight savings, and he had a really wonderful day. Lunch was pau d’arco, leuco, and q/b. Before lunch he was outside playing wonderfully and running around, went down the slide about six times, and didn’t ever go to the backdoor, or get upset. I think something is really healing inside his gut!

Day 21: 3/9/20 Today would have been the last day of Nystatin. My guess is that G would have been in rough shape. It was really doing something inside of him once the work was complete I think. He had a good morning and slept until 8:30. Wow! He was very alert on the way to therapy, but started his “sleepy lean” when we were walking. I look forward to seeing how they think his day went.

Following Autism Supplement Routine Again

January turned out to be a difficult month. I wouldn’t say it was bad, or hard – just difficult. G started wearing the foot orthotics in the first week of January. He eased into it but then started wearing them all day while at therapy. I really didn’t think they bothered him. He would even point at the orthotics when at home and want to put them on. All the signs of him liking them were there. But it really seems like they were bothering him and blocking his sensory input. He just needs to get up on his toes. It’s an outlet for him. He couldn’t and he was getting angry. He was hitting and trying to scratch us. He was poking his therapists, trying to hit them, trying to hit other peers, and getting so upset about many little things. He could barely even eat dinner some nights. None of us knew what was wrong. We were starting to get really stressed and really down. I decided to have him just stop wearing the orthotics as a first step. In the first day of him not wearing them to therapy, he became happier. Within the next few days, he was almost back to normal. And now almost two weeks later, he is so much better. He’s so much better that the past weeks are a blur now. The fact we had to have a behavior meeting at therapy is a blur. I am so relieved.

This whole thing made me rethink his supplements. He was not taking anything extra in his food, pretty much, for almost a year. I took a break from dissecting all of that information and from dealing with all of us hiding things in his food. But now I am back on track and have the new regimen. It seems to be making him even more calm, focused and happy. Will keep building on this and see where it takes us.

Morning: (1/2 tsp) Leucovorin in yogurt

Afternoon: (1/2 tsp) Leucovorin, (1) pau d’arco, (2) quercetin and bromelain in puree

Water with fractionally distilled aloe vera and cromolyn sodium before nap

Dinner: (1) zinc picolinate, (1) calcium in yogurt

Why leucovorin?

Biochemically in the body, folic acid supports cellular perception and response, methylation processes and many enzymatic reactions. It is also linked to maintaining healthy homocysteine levels, which supports cardiovascular health.

To be active in the body, folic acid has to be reduced twice by folate reductase enzymes, then converted to tetrahydrofolate, after which a methyl group is added to the tetrahydrofolate. In some individuals, the use of natural folinic acid may be more beneficial than folic acid, because folinic acid already has attached four hydrogen and one methyl group, thereby shortcutting the complicated biochemical process.

Why pau d’arco?

Pau D’Arco is a tropical tree that has been used by natives in the Amazon as a folk remedy for hundreds of years. Pau D’Arco is an immune stimulant and helps keep the gastro-intestinal system healthy, making it less hospitable to yeast, parasitic, bacterial, fungal and viral infections. Studies have shown Pau D’Arco to be anti-inflammatory and anti-oxidant, as well.

Why quercetin and bromelain?

Quercetin helps ensure appropriate immune response, inhibits formation of free radicals and promotes circulatory health in part by supporting the integrity of small blood vessels.

Bromelain complements quercetin for appropriate immune response and cardiovascular health, while also promoting joint comfort. (Bromelain may enhance the transport of the bioflavonoids (like quercetin) across the intestinal membrane.)

Quercetin Bromelain supplies the flavonoid quercetin extracted from seed pods of the Dimorphandra mollis plant. Flavonoids are potent protective nutrients found in many plants and foods. Bromelain is an enzyme derived from pineapple.

In autism with possibility of inflammation or histamine problems, Quercetin functions on an antioxidant level to reduce damage and irritation caused by free radicals while suppressing histamine response – the body’s reaction to allergens. Bromelain functions on an enzymatic and protein level by limiting the action of metabolites and neutrophils on inflammation.

Why zinc picolinate?

From this article: International studies have found that normally there are high levels of zinc in the brain, and brain cells are regulated by zinc, but that zinc deficiency is prevalent in autistic children.

“Research using animal models has shown that when a mother is given a low zinc diet, the offspring will be more likely to display autistic associated behaviours,” she says.

“Our work is showing that even the cells that carry genetic changes associated with autism can respond to zinc.

“Our research has focussed on the protein Shank3, which is localized at synapses in the brain and is associated with neuro-developmental disorders such as autism and schizophrenia,” she says.

“Human patients with genetic changes in Shank3 show profound communication and behavioural deficits. In this study, we show that Shank3 is a key component of a zinc-sensitive signalling system that regulates how brain cells communicate.”

Why cromolyn sodium?

Cromolyn sodium works by preventing the release of substances in the body that cause inflammation. Cromolyn sodium originally derived from a healing herb called ammi visnaga. Among its other uses, ammi visnaga traditionally controlled kidney stone pain. Its ability to open the airways intrigued early researchers. They eventually identified the plant’s active ingredient: cromolyn sodium. Cromolyn sodium is known to prevent mast cells from triggering the immune response.

Why fractionally distilled aloe vera?

Aloe vera contains nearly 200 biologically active components, including polysaccharides, vitamins, enzymes and minerals. It helps balance the stomach’s pH levels and promotes healthy bacteria growth.

Why calcium?

Just because we need to get that back on track as well as Vitamin D, soon after.

As for the orthotics, he is already on a program at therapy where he is told to do “flat feet” so we will continue with the verbal prompts and see how much better he gets with it. But really for right now it’s not a big concern anymore. If he needs to do that sometimes, then he just needs to until we can find another way for him to get sensory input.

March goals? Test G to see if he has folate receptor autoantibodies. If he tests positive for those, it means that he definitely is benefiting from taking leucovorin (folinic acid) and should continue. Some studies show that as much as 60%+ of people with autism have these autoantibodies.

Sulforaphane and Autism, Our Avmacol Experience

There’s a lot I’d like to post about today but we didn’t sleep very well and my brain is a little foggy. (That explains my broccoli style banana phone graphic. I just had to.)

Gavin is at ABA therapy as I type this – it’s day 3. He is doing well and very happy to be there. Yesterday he ate lunch with them and I hope he will eat today as well. Then we are off to speech therapy, then home for a nap. I hope he has enough energy for all of this today! We’ll see.

Since I am not very spunky today, I managed to do only one thing so far in my constant world of research and that thing was: sulforaphane. I finally responded to a team member at Nutramax, the makers of Avmacol. They replied back to my initial email weeks ago but one thing led to another and I didn’t reply or order the supplement. Today I ordered two bottles of Avmacol and updated them, explaining how I really hope it works for us. The person already emailed me and told me to let him know how it goes. I am so floored by the fast response that I am not even sure what to say. It all seems too good to be true. Avmacol is supposed to be the best way to get sulforaphane working in the body and the people who work there seem to be pretty amazing people so far.

So about Avmacol: it’s a combination of sulforaphane and myrosinase which “ignites” the benefits of sulforaphane right there in the digestive system. I gave Gavin some other sulforaphane supplements before, but not on a regular basis, so I don’t know what the outcome was. But then I kept reading about it and decided that if I do this again I’d make sure to get the best formulation of sulforaphane possible. That’s when I heard about Avmacol and the way it is different than other supplements out there of the same type. It’s even the chosen tablet for clinical trials for sulforaphane.

I’ll update this post after we have been taking it for at least four weeks. The two bottles will arrive soon so hopefully I will see positive changes in Gavin shortly after his fourth birthday.

I’m leaving some details about two clinical trials with sulforaphane below, in case someone stumbles across this post and wants more details right away. There was a study completed in 2014 which showed positive outcomes in males with autism who were over 13. The second study I found is apparently still going on and I have emailed the researchers to ask if they can pass any info along to me to share with you. It’s another trial that doesn’t involve anyone younger than 13, but I hope it sheds some light on the benefits so that more people can use it successfully.

Sulforaphane Clinical Study 1 – Lurie Center for Autism 2014

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4217462/

This study was conducted at the Lurie Center for Autism of the Massachusetts General Hospital (MGH) for Children with approval of the MGH and Johns Hopkins University Institutional Review Boards, and was registered at ClinicalTrials.gov (NCT 01474993 under Food and Drug Administration IND 113542).

“The decision to test sulforaphane to treat ASD was based on four premises. First, extensive evidence shows that sulforaphane counteracts many of the same biochemical and molecular abnormalities associated with ASD, including oxidative stress and reduced antioxidant capacity, defects in glutathione synthesis, mitochondrial dysfunction and low oxidative phosphorylation, increased lipid peroxidation, and neuroinflammation. Although it is unclear whether these anomalies are etiological or secondary manifestations, their correction often improves ASD behavior

Second, a variety of small molecules including sulforaphane can ameliorate a number of unrelated genetic disorders by activating the “stress proteome,” which regulates many of the aforementioned damaging processes. Sulforaphane, as well as hydroxyurea, phenylbutyrate, and trichostatin A, have been shown in vitro to have therapeutic potential to reestablish cellular homeostasis in a number of unrelated genetic disorders.

Third, sulforaphane is a dietary phytochemical, derived from its precursor glucosinolate glucoraphanin, that is widely consumed in cruciferous plant-rich diets, and qualifies for consideration as a food, a dietary supplement, or a drug, depending on its intended use. Sulforaphane is therefore justifiably considered to be of low toxicity, and its administration to humans is well tolerated.

Fourth, widespread anecdotal reports have suggested that fever can dramatically but temporarily ameliorate the disturbed behavior of many autistic patients. Notably, the degree of improvement (mostly in stereotypic behavior and inappropriate speech) was unrelated to the severity of fever or of autism. This study explicitly suggested that elucidation of the fever response might provide insight into the mechanisms of ASD and point to new therapeutic approaches. Fever up-regulates heat-shock proteins and related mechanisms central to multiple cellular processes in the CNS, including synaptic transmission, and may improve long-range cerebral cortical connectivity that is depressed in ASD. Sulforaphane also up-regulates expression of the heat-shock response.

Participants, all male, were 13–27 y old at enrollment (median: 17 y). A history of behavioral improvements with fever was given by a large majority (32 of 40; 80%) of participants.

At 18 wk there was a 34% reduction in ABC and a 17% reduction in SRS scores,

Significantly greater improvement was observed among participants randomized to sulforaphane at 4, 10, and 18 wk for irritability, lethargy, stereotypy, and hyperactivity subscales of the ABC, and in awareness, communication, motivation, and mannerism subscales of SRS. After stopping sulforaphane treatment, both ABC and SRS subscores tended to revert toward baseline.

Our clinical impressions during the study, although blind to group assignment, were that 13 of the 40 participants improved noticeably with respect to sociability and behavior, usually observable by 4 wk; all were receiving sulforaphane. In queries to families and caregivers, before unblinding, 17 of 26 whose sons had taken sulforaphane reported gradual changes within the first month of treatment and correctly surmised their group assignment, whereas the remaining 9 on sulforaphane—and all but 1 of 14 who received placebo—were not improved, and believed that their sons had not received sulforaphane. Positive responses to sulforaphane were spontaneously reported by parents and caretakers, who commented (before disclosure of treatment category) on improved social responsiveness, behavioral compliance, and calmness in the subjects with ASD who were taking the active compound.”

Sulforaphane Clinical Study 2 -Carolina Institute for Developmental Disabilities, University of North Carolina School of Medicine

A second study from 2017 and still ongoing with Avmacol brand of sulforaphane:  https://clinicaltrials.gov/ct2/show/NCT02909959

I am going to try to get information about this trial to see the results. From the link above, it shows the way they will measure the outcomes but I don’t see any results  just yet.

About Indole3Carbinol

What Are the Most Reputable, Trusted Supplement Companies?

While I’ve researched a lot about which supplements to take and why, the last piece of the puzzle has remained: which brands can we trust the most? I purchase most supplements on Amazon and with that said, there’s always room for more research on the ingredients in those bottles. Let’s start with the most popular, the affordable and work our way to the most expensive. We’ll find out what deserves high price tags and which do not.

Swanson

This is the brand you will see on Amazon very often since they make or acquire every vitamin and mineral under the sun. I always thought Swanson made TV dinners or did food delivery. Turns out that was Schwan’s. The brand Swanson does make broth (owned by Campbell’s) and frozen dinners (owned by Pinnacle Foods) but that brand name isn’t related to Swanson Health Products. Swanson Vitamins, underneath the Swanson Health Products umbrella, is the United States’ largest privately held vitamin catalog retailer, was founded in 1969 in North Dakota. The founder (the big pill, if you will), Leland Swanson, was a self-taught natural health enthusiast which is something I can relate to. Swanson’s first choice of supplementation for himself was vitamin E capsules and this started his business path. After a long journey all of these years, Leland’s son has now retired from the business and in 2016 the company was acquired by Swander Pace Capital. (It’s interesting how both companies start with swan.) Since the company has been acquired, it does worry me on the quality of their products staying the same.

Source Naturals

Life Extension

Designs for Health

Kirkman

OmniBiotics

Absorb Health

Solar

Jigsaw

Makers of MagMind

Omnivits

Seeking Health

NOW Foods

Terapeutics

Double Wood Supplements

Doctor’s Best

Nootropics

Pure Encapsulations

Life Seasons

 

For what it’s worth, here is the list from ConsumerLab.com for what real consumers have selected as their most reliable supplements, but this list does not attest to quality or purity, it’s only what consumers reported to be working well for them:

Top-rated Supplement Brands on Overall Consumer Satisfaction:

Catalog/Internet Brand: ProCaps (Andrew Lessman)
Direct Selling (MLM) Brand: USANA
Discount/Warehouse Brand: Kirkland (Costco)
Food/Drug/Mass — Broad Product Line: Nature Made
Food/Drug/Mass — Narrow Product Line: HPF Cholestene
Grocery Store Brand: Trader Darwin (Trader Joe’s)
Healthcare Practitioner Brand: Pure Encapsulations
Health Food Store Brand: Kyolic/Kyo-Dophilus
Pharmacy Brand: Walgreens
Vitamin Store Brand: Vitamin Shoppe
Canadian Brand: Natural Factors

Top-rated Supplement Brands on Consumer Satisfaction with Specific Types of Supplements:*

Calcium: Puritan’s Pride
CoQ10: Member’s Mark (Sam’s Club)
Joint Health: Puritan’s Pride
Melatonin: Natrol
Multivitamin: Life Extension
Omega-3s: Life Extension
Probiotic: Renew Life
Resveratrol: Life Extension
Vitamin D: Puritan’s Pride
* Excludes direct sales brands due to potential respondent bias

Top-rated Supplement Merchants on Overall Consumer Satisfaction:

Catalog/Internet: Life Extension
Direct Sales (MLM): USANA
Grocery Store: Natural Grocers
Mass Market: Target
Online Multi-Category Retailer: Amazon.com
Online Supplement Retailer: Vitacost
Pharmacy: Walgreens
Practitioner Line Merchant: Pure Encapsulations
Vitamin Store: The Vitamin Shoppe
Warehouse Store: Costco