September 7, 2011


At Bertrand’s neurology appointment last week, the doctor laid out the following timeline:
  • Follow-up appointment in 4-6 months
  • Revisit medication in 4-6 months
  • Repeat EEG in 6 months
  • Repeat MRI in 2-3 years
I’ll admit to feeling some frustration upon hearing this but, as I noted in an earlier post, some times it takes doctors a bit longer to get on the right page. ;)

Fortunately, the neurologist is no longer key to understanding Bertrand’s case management. She never was. Bertrand was the key.

While some extra non-invasive tests, like an EEG & MRI, would give me peace of mind and validate the vitamin deficiency theory, these test are not necessary. I can see, with my own eyes, Bertrand’s seizures disappear, and I can see him progressing developmentally.

This is just a crazy theory, but I think that if we didn’t completely miss Bertrand’s growth spurt, his head measurement may increase since being on the vitamins B12 and A. He has microcephaly (his head measures 48 cm), but that can be caused by B12 deficiency. In young B12-deficient children, the microcephaly can correct itself in a few months with supplementation. I hope this is the case with Bertrand.

Last but not least, Bertrand’s seizure medications have already been decreased (without MD buy-in) with no additional seizures. And, in another few weeks, given continued seizure freedom, we will cautiously and slowly reduce the medication further. I would love to have a doctor’s help with this, but she wants us to wait months just to discuss the drugs!?

Despite the fact that Bertrand has been on Lamictal since November (9 months) and Depakote since February (6 months), she implied that the sudden disappearance of Bertrand’s seizures, within one week of starting the vitamin-B12 in late August, was most likely due to the lamictal and depakote! If we don’t lower the drugs ourselves, Bertrand’s neurologist will claim that the drugs are to thank for the seizure control. And, she is wrong.

She is not listening to me. If she doesn’t listen to me, then how can I listen to her?


  1. We had the same frustrations with the drugs for Jade. Every time we upped a dose, her seizures got worse. Every time we introduced a new drug, she'd start having a new type of seizure. When we pointed this out to the epileptologist, we were told that it's the natural progression of her epilepsy and would probably be worse without the drugs. And yet, whenever we accidentally missed a dose her seizures improved.

    We won out in the end, but it took far, far too long to convince the doctor (in my opinion).

    I wonder how many kids with MAE, like Jade, get worse because of the treatment. I swear it's like the modern form of bloodletting. Makes me mad.

  2. Sounds like you're eventually going to fire your current doctors. Maybe you'll even find a nice D.O. to manage B's care.

    The medical doctor guild tried to exterminate competition with licensing laws in the late 19th and early 20th centuries (ref: "100 Years of Medical Robbery", posted at, but Osteopathy was organized enough to adapt, survive, and is now thriving.

    In that great influenza outbreak in the early 20th century, Osteopathic hospitals were vastly more survivable than conventional hospitals, which were basically death wards. M.D.s gave pills to suppress fevers, whereas Osteopaths recognized that fever was an important part of the body's response to the pathogen. M.D.s didn't even care to separate flu patients from the rest of the hospital's population.

    Whereas Medical Doctor School teaches MDs to respect the power of drugs, Osteopathic medical education teaches more respect for the patient's own power to heal.

    Sure, some D.O. students were only there because they couldn't get into M.D. school (because of the Flexner Report-induced shortage of slots, of course), so they practice just like M.D.s... But generally speaking, people are much happier with a D.O. as their primary doctor.

    anyways, hth. :)

  3. Have you thought of checking B's B12 and A levels via blood test? Or do you think it's already too late since he's been on supplements for several weeks?
    A friend of mine (who is a doctor) was wondering if anyone had ever checked his vitamin levels. She claims it's a pretty simple test.

  4. Sadly, I've come to realize that much of modern medicine is glorified bloodletting.

    Yes, later this year, we'll be trying a DO. A DO probably would've done a B12/A check, given Bertrand's symptoms, right off. :(

    Katie, unfortunately, a B12 check was never done until 2 weeks into supplementation. Of course this threw his B12 value through the roof--but it was a good check of his oral B12 absorption. There are other factors in the blood which indicate B12 deficiency--such as MCV & MCH--and in Bertrand those were chronically elevated. You'd think these elevated values would've triggered a B12 test especially given his neuropathy & movement disorder!


    Hindsight is 20/20.

  5. That's the Cristina I know, the Cristina who knows she, and not any doctor, is the that world's expert in Bertrand. Bertrand is so blessed to have you as his mom.

    I'm tired of neurologists who don't get it. The neurologist we used to see at PCMC told us to wait a year to have LJ evaluated for epilepsy surgery--thank heaven we disagreed and went ahead and did it! Even the doctors at the Cleveland Clinic, whom I love and hate to say anything unpleasant about, are sometimes a little dense about how these drugs actually work for kids. They don't have to live with it all day every day so they just don't understand. I told a neurologist there the other day that I thought Phenobarbital was responsible for some of LJ's hypotonia and overall slowness, and she absolutely insisted that it wasn't. I know better, every parent of a child who has ever been on seizure medication--especially Phenobarb--knows better. I don't know what could ever bridge this gap between parents and neurologists short of requiring every neurologist to adopt a child with epilepsy, but I wish it could be bridged somewhow.

  6. Ashley, Bertrand has been awake for most of today. He went to school, he played hard, he's been active and interactive. Just a month ago, he'd still sleep most of the day (~16 hrs). While I guess it could be just the B12 working, I think the lowering of his meds also contributed to his alertness. Oh, and not a single SZ. :) But, then again, I am not a doctor. So what do I know? ;) Hahaha!

  7. Hahahahahaha! What do you know? A LOT more than the doctors about Bertrand. Is he really seizure free Cristina?!

  8. Shhhh!!! Touch all the wood in sight. We don't mention the "S" word. ;)

    (I question a few tiny jerks during sleep, but that's probably paranoia. We're counting our blessings!)

  9. Seguimos el caso de tu hijo. Ciertamente es el mejor antiepileptico que le has dado la vitamina!!!! No es necesario un ECG, la diferencia es muy clara. Si queres poner a prueba tu hipotesis podes enviar una carta a alguna revista medica contando el caso de Bertrand para tener otras opiniones profesionales, aunque por las cosas que comentas no necesitas este tipo de aprobacion.
    A nosotros nuestra neurologa tampoco nos eschucha... Nos dijo de contarles las crisis a Iara. Le dijimos que eran incontables de tantas que eran. No nos creian hasta ver el informe del ultimo ECG donde informaron mas de 90 crisis en 1 hora. Cuando ella vio el informe se puso violeta, sabiendo que nosotros teniamos razon...eran incontables. Besos y esperamos que el pequeño siga así! Y la mamá también! Javier y Noralia

  10. wow, I am so happy for you Cristina! I spoke to Ava's optho the other day and told her of Ava's tears with vitamin b12 and then B's. She said that was interesting. But I couldn't get her hooked until I repeated myself 4 times. First Ava gets tears then another child with similar symptoms?? This can't be a coincidence. Finally when I explained Ava not continuing with the tears. She told me to stop giving it for three weeks and begin again at the same doses. And to call her with the results. I guess that is what we will do. I plan to use B as fuel at this Wed appointment though!

  11. Hello Christina and Matt.

    It is really great to see how much work you are doing for your son.

    It is good that the supplements are helping, but bear in mind that deficiency in a particular vitamin is more often a marker of the disease process rather than a cause. Usually it signals that the body's systems are off-balance.

    Topping up B12 and A are a short-term treatment and may well give results, although they may not be useful at treating the underlying problem.

    (Just as if your car starts leaking oil - you can top it up and keep it running, but if you fix the leak, then you are tending to the underlying problem and won't have to deal with messy garage floors or driveways).

    I read the list of Cole's diagnoses and at least a few of them are known to be treatable. Obviously, Cole has many problems and a simple solution to all of them would be unlikely, but you might like to read about the Marshall Protocol.

    The MP is designed to treat chronic disease (including many of Cole's symptoms), which encompasses a huge spectrum of 'diseases' and 'syndromes' that the current medical community does not understand and has no cure for.

    I have sarcoidosis and have been on this protocol for 19months and I am completely certain that I will be cured. It's not faith, or a feeling or hope, it's my natural skepticism combined with a scientific mind and an understanding of the science behind the treatment that convinces me - not least of all the actual healing experience I have been going through.

    I don't want to ramble on, and I am not selling you anything (nobody involved with this treatment will try and sell you anything except a solution to chronic disease), so I will try and give you a short explanation.

  12. The MP is aimed at re-enabling the body's immune system to fight pathogens that are causing the disease.
    The pathogens are L-form bacteria, which act differently to their original forms. Many types of bacteria are present in our systems and generally do not harm us but some convert to L-forms, which are slow-growing and cause inflammation and fibrosis which affects the GI tract, the nervous system, internal organs and almost any part of the body.
    One of the effects they have is to disregulate hormones in the body, and prevent the body's innate immune system from working.

    This is all based on new research (as recent as the last year or less) and evidence gathered from a huge group of patients that have chosen the MP as their form of treatment.
    I personally told my doc that I will never take steroids (the only thing he can offer me) as I have learnt that they actually shut down the immune system and will make my condition worse.

    My opinion is this:
    The fact that Cole is so sick at a young age is that the pathogens that cause much of his condition may have been passed on through the womb, or earlier on via egg and sperm (this has been proven to happen with chronic conditions).
    Cole has a huge advantage, in that children grow new cells and heal faster. Fibrosis can be eliminated by a healthy system, just as fungal infections, virii and bacterial infection, so I really think you can have faith that if you get him healthy when he is young, he will turn out fine.

    Often, many diseases are suspected of being genetic, when in fact, the l-forms that have overcome the body's cells have done enough damage to damage the genes - hence many researchers are looking for a genetic (and often hereditary) cause when in fact, the genes are only the smoking gun. The guys pulling the trigger are the l-form bacteria.
    I won't donate to cancer research, for example, because I feel they are going down the wrong rabbit-holes, looking for genetic causes and will never come up with A CURE because they will have to come up with a cure for more than 200 types of cancer (200 different diseases!).

    It is good to question existing knowledge, because it is often out of date.
    Current medical treatments, as you have probably figured, are only palliation. most doctors will monitor and palliate their patents until they die. Not many can offer a cure for disease (and the drug companies are ok with that, of course).

    You may regard this all as quackery, but I hope you do a little reading and maybe give this treatment a try. The drug involved is pretty innocuous and the treatment is designed to slowly heal the body without causing damage or pain.

    If you want, you can find info at

    Best wishes to you three,

  13. I should add - I'm not a medical professional, but I have learned a hell of a lot since being diagnosed with sarcoid.

    I only came across your site because I was looking at 'The Illustrated Guide to a Ph.D.'. Spot on! ;)

  14. Oops, one last comment.
    I realise that genetic disorders can be the ultimate causal factor and so the MP may be little or no use in this situation, but the MP science is solid and there is a lot of new research ind information there that may be relevant or at least helpful in any paradigm shifts that various medical professionals you interact with will have to undergo ;)

  15. seizures?? oh this is great news! I really hope he continues to do I always say...Mama knows best!!! Especially Bertand's mama!!! Seriously...can I just tell you how much I look up to really are an amazing mom. I think you should become an MD so I can go to you!

  16. oh, by the way...we've had similar issues with that dr (if it's Dr.S)...we now see Dr.Filloux and he seems to listen to us :)

  17. Sorry, I don't know why I was writing 'Cole this' and 'Cole that', when your boy's name is Bertrand. I obviously got my wires crossed somehow!

  18. Sarah - You're an amazing mom too! YOU inspire ME! :) And, of course you're right it's Dr. S. She drives me batty sometimes. :)

    Seth - Thank you so much! We'd looked into the MP, but it requires vitamin D elimination. Unfortunately, given Bertrand's seizures, we were told that interruption the vitamin D pathways was a bad idea. However, we'll be talking to his new naturopathic doctor about this in December.

    Thanks again, everyone!