Autistic child with sleep, lethargy issues

Foreword – and Reminder

I am not a licensed medical professional and there are strict laws where I live about “appearing to practice medicine”.  I am safe when it is “academic models” and I keep to the language of science, especially statistics. I am not safe when the explanations have possible overtones of advising a patient instead of presenting data to be evaluated by a medical professional before implementing.

I cannot tell people what they should take or not take. I can inform people items that have better odds of improving their microbiome as a results on numeric calculations. I am a trained experienced statistician with appropriate degrees and professional memberships. All suggestions should be reviewed by a knowledgeable medical professional before starting.

Patient Notes

My son has headache, lethargy and reduced sleep. He’s in the spectrum so there are a lot more symptoms associated with it. But these are things I am trying to figure out, help him at least have a life without pain.

Analysis

As a result on my involvement with Long Covid Study – VERY early data, I built some private tools (computational intense, with good statistical understanding requires) .

The number of bacteria flagged for the closest match to the symptoms (with good sample sizes) are shown below. Each set of suggests had a lot of similarity to each hour, especially with red wine near the top of most lists. Red wine to children was historically done (especially French and Italian kids), but . . .

Symptom ObsNo Symptom ObsSymptom
Name
Bacteria
Flagged
83901General: Headaches32
41943Post-exertional malaise: General22
70914Neurological-Sleep: Chaotic diurnal sleep rhythms (Erratic Sleep)72
77907Autism: Official Diagnosis26

At this point, I decided not to grind thru the standard set of suggestions, instead look at the consensus data (which is attached as a download below). The list was less than usual, 180 items.

I also went over to the KEGG determined probiotics and saw some items had consensus between them for probiotics, the top agreements are below

In terms of supplements:

  • Biotin (Vitamin B-7), B-12, B-1
  • Calcium

Check the diet for food that may be high in choline (aka choline deficiency) and reduce them. See NIH page for a list.

Pro Forma Analysis

I went on to do the usual analysis:

The consensus report is attached, the suggestions appear similar but with shifting up and down on the list and a lot more items (567 vs 180 above). This video shows the process

Bottom Line

I did a VLookUp in Excel between the two lists to see the similarities and differences. There were a few difference. My usual advice is “if we don’t know the right answer, omit unless there is a strong reason to include”

CustomPro FormaModifier2
317.5262.4choline deficiency
309.3382.7rice bran
205.279.2Prescript Assist (2018 Formula)
193.6208.6vitamin b7 biotin (supplement) (vitamin B7)
164.980.4high red meat
153-13.2saccharomyces boulardii (probiotics)
152.363.6low fodmap diet
152.3159.4low protein diet
138.8-21.6low-fat diets
130.862.8calcium
124.2-24.4fructo-oligosaccharides (prebiotic)
118.5-32.7vsl#3 (probiotics)
108.572.3saccharin
105.4-15.6red wine
105.42.4schisandra chinensis(magnolia berry or five-flavor-fruit)
105.444.2stevia
105.422.8l-citrulline
98.474.7Prescript Assist (Original Formula)

Questions and Answers

One of the fundamental challenges of the microbiome is a lack of information on many interactions because studies have not been done. The site attempts to use whatever fragments of information that is available as well as the genes of the bacteria (when the data is available).

  • Question #1 PIANETA FARMA/KefiBios – I saw his Akkermansia is at a good level. Do you still recommend this probiotics?

The only known impact is on Akkermansia but that was not the basis of the suggestion. The suggestion came by looking at the amount of various compounds that he appears to be low in (using Kyoto Encyclopedia of Genes and Genomes on the bacteria he has, and the bacteria in various probiotics). Most of these compounds are not available as supplements.

Compound NameOtherNameFormula
D-AlanineD-2-Aminopropionic acid  D-Ala C3H7NO2
L-HomocysteineL-2-Amino-4-mercaptobutyric acid  Homocysteine C4H9NO2S
Aromatic aldehydeC7H6O
CDP-diacylglycerolCDP-1,2-diacylglycerol  1,2-Diacyl-sn-glycero-3-cytidine-5′-diphosphate C14H19N3O15P2R2
ThioredoxinReduced thioredoxin C10H14N4O4S2R4
N-(L-Arginino)succinate2-(Nomega-L-Arginino)succinate  L-Argininosuccinate  L-Argininosuccinic acid  L-Arginosuccinic acid C10H18N4O6
2-Dehydro-3-deoxy-6-phospho-D-gluconate6-Phospho-2-dehydro-3-deoxy-D-gluconate  2-Keto-3-deoxy-6-phosphogluconate  2-Dehydro-3-deoxy-D-gluconate 6-phosphate C6H11O9P
4-O-[(2R)-1-Glycerophospho]-N-acetyl-beta-D-mannosaminyl-(1->4)-N-acetyl-alpha-D-glucosaminyl-diphospho-ditrans,octacis-undecaprenolC74H125N2O22P3
The above were at the 5%ile or less
  • Question #2: Prescript-Assist®/SBO Probiotic  –  I saw the list on your website. Sorry, I want to understand a little more detail about it. I know its soil based probiotics. I wanted to understand if it will help improve bifido .. I saw this has bacillus.
    • Answer: There is no known direct impact on bifido. If Bifidobacterium is your primary concern, excluding every other bacteria involved, then see this page. Suggestions are based on a holistic analysis, not a blinkered view.
  • Question #3: Also do you have any recommendations to help reduce the histamine level?
    • Answer:  Diamine oxidase (DAO) is the supplement commonly used to reduce the impact of histamine [study]. “Histamine is a monoamine synthesized from the amino acid histidine through a reaction catalyzed by the enzyme histidine decarboxylase (HDC)”[2018] Trying to find the bacteria involved is a bit more speculative.
Clicking on Enzymes

Searching for histidine involved enzymes, we see that he has very high levels of two:

The three greatest producers are: Erysipelatoclostridium ramosum,  [Clostridium] innocuum, Turicibacter sanguinis and Streptococcus iniae. For Erysipelatoclostridium ramosum, most items increases it ( dairy, resveratrol (grape seed/polyphenols/red wine)) but two items decreases it: xylooligosaccharide (prebiotic), bifidobacterium bifidum (probiotics). You could try hand assembling suggestions for these 4 bacteria.

The other way, using Diamine oxidase, is to go over to KEGG, it is Enzyme 1.4.3.22, none of the bacteria he has appear to produce it, nor do any of the bacteria reported from 16s samples.

  • Question #4: Choline Deficiency – Does it mean we have to give him a PC?.  You had mentioned there might be Choline in his diet. So is it more or is it deficient?, I think choline and Ammonia might be impacted because of the Antifungal regimen he is in?.
    • Answer: Choline occurs naturally in food, Background: https://www.hsph.harvard.edu/nutritionsource/choline/ A study on choline deficiencies found that the bacteria we targeted were shifted in the desired direction. There is a lot of literature on choline ( https://pubmed.ncbi.nlm.nih.gov/?term=choline+deficient+diet ) and digesting that is a job for your medical professional. My usual takeaway is  check what is normally eaten for choline content and consider reducing it a bit by changing foods (after consulting with your medical professional). No need to go to extreme measures… it is just one possible factor.
  • Question #5: Also the modifier 2 means he needs all those based on his microbiome, Is it right?
    • Answer: I do NOT know what he needs, the suggestions are strictly things that have been calculated from available data that has improved odds on shifting the microbiome towards the typical microbiome. Everything is probability and odds — nothing is definitive. In the absence of definitive knowledge, I believe that modelled data gives better suggestions than “let us try A,B,C”. For dealing with ME/CFS, the suggestions of what should help matches the literature on what helps – which increases my confidence in the model.

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