21/2 year old, long history, now extremely low HVA/VMA

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  • #1032
    Lynn AltierNeed
    Participant

      Hello Dr. Woeller,

      I’m struggling with the most recent OAT (4/4) that is showing potential new signs of SIBO, high yeast (chronic) and very low NTs. This child has a history of clostridia on the 3/4 OATs. This child is vulnerable to seizures and is showing lethargy, low productivity. The mother has battled with several doctors, including a GI doctor who recently conducted a scope and ‘found nothing’. I’ve stressed the importance to the mother to try antibiotics since the latest decline. Historically she has only wanted to use botanicals. She lives in Germany and has challenges with the system there, like I find many of my US clients find here.

      We had success in the past when we addressed early digestive infections. However, he is no longer progressing and digressing.

      The extremely low levels of NTs are of concern. Yet, I’m cautious to recommend tyrosine for fear of low BH4 levles, or impaired dopamine hydroxylase with the history of clostridia. Plus he’s heterozygous for two types of COMT. I’m concerned of a buildup of dopamine that could lead to more seizures.

      We’ve tried breaking down biofilms, supporting with BCAAs, low oxalate diet (and cal/mg citrate before each meal). He’s also on the standard minerals, vitamins, probiotic, D.E., mito support, glutathione, liver support, vitamin B12 hydroxy (COMT) and methylfolate.

      He’s been tested for CFD which was negative.

      He’s tubefed and isn’t currently eliminating as consistently. I’ve been through the list of constipation remedies and we are now onto castor oil packs every few days.

      Can you please look at his recent OAT and give suggestions? I appreciate your expertise and could really use some about now :).

      Respectfully,
      Lynn

      #1034
      Lynn AltierNeed
      Participant

        I should also mention that this child showed an increase in seizure activity with an introductory dosing of biocidin.

        #1035
        DrWoeller
        Keymaster

          Lynn,
          I am not seeing any clostridia markers on this child.

          The markers that are present are significant:

          -Arabinose – invasive candida
          -Oxalate + Glyceric – likely an endogenous producer of oxalates
          -Lactic + Succinic (plus all the other mitochondrial markers) is highly suspicious of mold toxicity and chemical toxicity. Also, there is definitely a mitochondrial dysfunction with this child.
          -The low NT could be from Glyphosate and/or other chemical toxins. Also, Aluminum can lead to acetylcholinesterase inhibition which can effect NT’s as well.
          -Fatty acid metabolites point to mitochondrial problem.
          -Detox markers high normal

          What is the back story on this child?

          I would perform the following tests from Great Plains:

          -Hair Metals
          -GPL-TOX
          -Glyphosate
          -MycoTox Profile

          There may be more, but there is something else going on with this child that needs further investigation.

          Sincerely,
          Dr. Woeller

          #1036
          Lynn AltierNeed
          Participant

            Hello Dr. Woeller,

            Thank you for responding so quickly.
            Yes. The markers are significant, following dietary, supplemental interventions for over 1 year.

            History on child: normal healthy delivery and first 7 weeks of life. Seizures began. Child was placed on one, two then three anti-epileptic drugs. (I see this in nearly every single client I work with). The seizures were not controlled. Medications have been changed and the ketogenic diet was introduced. This child’s seizures persist and growth delays correlate.

            When working with mother, we began digestive interventions addressing clostridia, yeast, elevated orotic, nutritional deficiencies (including glutathione). We saw improvements: eye contacts, smiling, hand holding. This lasted temporarily. The seizures have persisted and GI problems stubbornly remain.

            The history of clostridia was present with the first 3 OATs. It now appears to not to be present. Invasive yeast has remained present, despite biofilm protocols, interventions with grapefruit seed extract, Allicin, Candex and now Lauricidin (monolaurin) and soil-based CoreBiotics.

            A hair analysis hasn’t been possible. A CSA revealed no pathogens (a while back). No GPL-tox test has been taken. The child doesn’t leave the home, unless for doctor’s visits so his exposure to environmental toxins would be limited at best. The mother does not believe that there is mold in their home. His head circumference is not increasing and he’s beginning to appear “failure to thrive”. The mother feeds him low oxalates, clean organic foods. The child is also dairy and gluten free. There are two older children with normal healthy development.

            I’ve included the OAT from August 2017. The improvements are in folate deficiency (methylfolate was received more positively than folinic). His fatty oxidation remains the same. However in 2017 the child was on the ketogenic diet so I’m surprised to see these markers remain high. The child takes acetyl l-carnitine 83mg twice per day.

            Hopefully this provides you with more information.

            Respectfully,
            Lynn

            #1038
            Lynn AltierNeed
            Participant

              One more question: Does fish oil (PUFA) interfere with the fatty acid oxidation pathway? I understand that saturated fats do (such as the ketogenic diet)? The child is taking B5, B3 which I would think would help convert to Acetyl Co A?

              Much appreciated,
              Lynn

              #1039
              Lynn AltierNeed
              Participant

                I’m not certain how I left out this important symptom: the child screams, inconsolably, in what appears to be pain (particularly at night). šŸ™

                #1040
                DrWoeller
                Keymaster

                  Lynn,
                  Any vaccine reactions early on with the seizures that you suspect?

                  It’s probably worth increasing the dose of Carnitine and perhaps switching to L-Carnitine, instead of Acetyl-L-Carnitine. This may be a stretch, but too much Acetyl-L-Carnitine, in the presence of organophosphates, can elevated acetylcholine. Too much acetylcholine can lead to lowering of other neurotransmitters, i.e. dopamine, serotonin. Aluminum toxicity seems to have a similar relationship too. That’s why I am wondering about past vaccine regression. Also, PUFA and fatty acid metabolites on the OAT would likely affect the markers too. I think in this case its likely coming from other issues too, i.e. yeast, L-carnitine need.

                  In comparing the OATs:

                  -Candida somewhat improved from OAT #1 (old) to #2 (new), but still there.
                  -Oxalates overall unchanged. Still very high. The high glyceric points to some endogenous production of oxalate.
                  -The lactic acid is still suspicious. This could be linked to an underlying mitochondrial defect. However, high oxalate can cause it and stress (possibly seizures). Myctoxins are being linked as well. I still think you need more information and would suggest the Mycotoxin profile.
                  -The NTs are so much worse which I cannot explain at this point. Since there is no more clostridia I think using some dopamine boosting supplementation is worthwhile. New Beginnings carries e Dopa-Plus. It’s hard to get a hold of BH4 anymore as a supplement. There is a prescription form of BH4 called Kuvan. Not sure this is available in Germany. At this point the Dopamine is so low I don’t think there is too much risk of dopamine build-up.
                  -Do they have access to CBD in Germany?

                  Dr. Woeller

                  #1041
                  DrWoeller
                  Keymaster

                    Lynn,
                    The screaming in pain could be related to persistent oxalates. If they are waking up at night in pain consider gastrointestinal reflux. Ask the mom if there is anything that seems to make the screaming better and if the child wakes up at night screaming. Worse after meals?

                    Finally, I might have missed this from before, but you mention the child’s digestive system continues to be a problem. In what ways? constipation? Did the child start having gut issues when the seizures began?

                    Dr. Woeller

                    #1042
                    Lynn AltierNeed
                    Participant

                      Thank you again Dr. Woeller for responding.

                      To address your questions:
                      1. The child was not vaccinated.
                      2. The child did start having gut issues when the seizures began.
                      3. The oxalates remain high despite the mother feeding him lower oxalate foods, and offering calcium citrate before each meal.
                      4. Arabinose has remained severe.
                      5. The child’s medications are clobazam, clonazepam, Onfi, klonipon and Valproic acid. I am suspicious that the toxicity from medications are driving the elevation in succinic, the excess arabinose and thus the oxalates. The mother is trying to wean the child from medications but it’s an extremely slow process. Are you familiar with BioRay liver and detoxification products?

                      I will recommend the mycotoxin screen as well as the L-Carnitine substitute (great to know!). I will also discuss the introduction of the dopamine product through NB.

                      Regards,
                      Lynn

                      #1043
                      DrWoeller
                      Keymaster

                        Lynn,
                        I am familiar with the Bioray. Haven’t used a lot of them, except for their NDF products and Liver Life. I would suggest talking to the people at Bioray to get some more insight into the use of their products.

                        1 – okay
                        2 – okay. Do you think there is a strong connection between the gut problems and seizure activity?
                        3 – The gut problem could in part be from oxalate. But, this oxalate issue seems more significant than just a dietary issue. Any family history of kidney stones?
                        4 – right
                        5 – that’s a lot of medication. I could see, maybe, the Succinic acid being linked to the medications, but probably not the arabinose or oxalate.

                        You seem to come across some challenging cases.
                        Sincerely,
                        Dr. Woeller

                        #1044
                        Lynn AltierNeed
                        Participant

                          Dr. Woeller,
                          When we saw marked improvements in cognition we also had a long period of no seizures, all correlating with a clostridia protocol (Allicin, Culturelle). Plus in other cases I will also see improvement in Seizure threshold even with just improved motility (constipation resolved). On a side note: Iā€™m eagerly waiting the results of experimental research results for fecal transplants specific to epilepsy.

                          This family does not have a history of kidney stones.

                          Yes to challenging. These families are without support and unfortunately nearly all of them are or were heavily medicated with little resolve. Improving gut health shows promises.

                          Thank you for all of your support.

                          #1045
                          DrWoeller
                          Keymaster

                            Lynn,
                            The gut plays such a huge role in health and disease.

                            I get emails, notifications, etc. almost every day now of the guts connection to this problem or that problem. Wouldn’t surprise me one bit that FMT could help some individuals with Epilepsy.

                            Dr. Woeller

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