child – compound heterozygous

This topic contains 9 replies, has 2 voices, and was last updated by  Dr Lynch 2 years, 9 months ago.

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  • #808 Reply

    Cyprianek

    Hi everyone,

    I’ ve just got the results of my 2,5 years old son – he is compund heterozygous… I am pretty devastated – he is also diagnosed with autism, now I am scared of mental retardation or even death… I dont know what to do, there are a lot of information on the web, but please, tell me – what can I expect? what can be a problem for him? and, most important, how can i help him?

    Looking forward for some answers…

    #858 Reply

    Dr Lynch
    Keymaster

    Cyprianek –

    Death is not a factor here for MTHFR compound heterozygous. I myself am compound heterozygous and doing very well ;)

    You need to start at diet and work out from there.

    No gluten.
    No dairy.

    Probiotics, vitamin D3 and fish oil are all critical.

    – Consider giving him 1/16 teaspoon of ProBiota 12 Powder after dinner

    – Consider giving him 1,000 IU of Vitamin D3 per 25 pounds of body weight daily via Vitamin D360.

    NOTE: Each drop of Vitamin D360 contains 2,000 IU of vitamin D3 – keep that in mind! If he weighs 25 pounds, you can give him 1 drop of Vitamin D360 every other day.

    – Consider giving him 1/4 tablet of Active B12 5000 for 2 weeks and see how he responds. If well, increase to 1 a half-tablet in the mouth daily for 2 weeks. If he responds well, increase to 3/4 a tablet for 2 weeks and keep increasing in the amount by 1/4 as you see him improve.

    – Consider giving him 1 teaspoon of Optimal Fish Oil daily straight or mixed in something.

    – Consider giving him 1/4 a tablet of Optimal Multivitamin Chewable with breakfast for a week and see how he responds. If well, increase to 1/4 at breakfast and 1/4 tablet at lunch.

    It is going to take some work but the above suggestions should help you get him on the road to recovery!

    NO GLUTEN or DAIRY. PLEASE!

    #900 Reply

    Cyprianek

    Hello,

    Thank You very much dr Ben for all Your information and support – I am more optimistic today :) I wonder if You could also tell me, if what I give to my son is acceptable:
    1. mb12 (in drops)
    2. bcomplex
    3. magnesium
    4. kirkmans cod liver oil
    5. probiotics

    and now, we were talking with our doctor, and she suggests us to take also:
    1. homocysteine factors
    2. acetylo-l-carnitine
    3. DMG
    4. Coq10

    I was wondering, if its ok, according to You :)
    Thank You very much for all Your anwers,
    Cyprianek

    #930 Reply

    Dr Lynch
    Keymaster

    Hello –

    I think that is pretty intense to start off with for your son.
    What you have him on currently is great – but if you add in those other nutrients, they can be too strong and cause a regression.

    With autism, you have to take one step at a time.

    I recommend you do a lot of learning at http://www.DrAmyYasko.com – she is brilliant and has a pretty good protocol. I do not like all the supplements she recommends but she does have some outstanding information – and a lot of it freely on the website – under the Resources tab.

    Your child likely has other mutations in play here – beyond the MTHFR – likely CBS and COMT as these are commonly found in addition to the MTHFR mutation in autistic children.

    You MUST avoid all:
    – gluten
    – dairy
    – soy

    Those three things are huge in people with autism.

    I doubt your child has elevated homocysteine. Methylfolate may be useful here but has to be done only after the foods are eliminated – otherwise you will trigger headaches, anger, joint pain, muscle pain.

    DMG can also cause issues unless you remove those foods first.

    CoQ10 is likely ok to give.

    #947 Reply

    Cyprianek

    Thanks dr Ben,

    We are thinking of check all the genes in something which is called methylation panel or something like that :)

    About the diet – he is on the diet (no dairy, gluten, soy and sugar) for 6 months now – that was our first intervention. Since then he made a lot of improvements, especially start speaking (like: mama, dad, cat etc.).

    Thats why we want to do more, and of course, we are giving him all the nutritions step by step, for example: for the first week we would like to give him DMG, if its ok, in the second week we will add acetylo-l-carnitine…

    Thanks for all Your help,
    With regards,
    Cyprianek

    #954 Reply

    Cyprianek

    Sorry, dr. Ben, I forgot about few more questions :)

    1. How much probiotic should I give to my son?
    2. what about vitamin D3?
    3. You have written about specific rules, I mean: “no carpers”, “filtered water” and “air purification” – why its so important for compound heterozygous?

    Thank You a lot for Your answers,

    Cyprianek

    #967 Reply

    Dr Lynch
    Keymaster

    Hello –

    1) Please provide 1/4 teaspoon of ProBiota Infant – which provides at least 10 billion organisms in 12 strains.

    2) You want to give 1,000 IU of Vitamin D3 per 25 lbs of body weight.

    3) It is important for everyone – not just compound heterozygous. Limiting toxin exposure is #1 thing to do in order to prevent disease – in my mind.

    Adding in one nutrient at a time is smart.

    DMG sounds good – and the other nutrient as well.

    The Methylation Panel may prove useful. It can get expensive really fast – I know which one you are talking about. The supplement protocol on it is pretty ‘extensive’ is one way to put it.

    Many find it effective – I feel it may be a bit over the top.

    #1059 Reply

    Cyprianek

    Hello one more time :)

    Dr Ben – today we started DMG (5 ml of DMG 125 liquid). I hope it will work good for our kid. I’ve read that my son should also take folic acid. Is that true? and if it is how much and what form of folic acid should he take?

    I am so terrified that it will make him hyperactive…

    And, I am just curious (maybe the question is stupid, sorry for that :) – what about having an animal, like a cat – is that somehow good or bad for child with that kind of mutation as my son has? We have a litlle cat to help my kid get more social – he likes him very much :)

    I am also sorry for any languages mistakes – I am writing from Poland :)

    Kind regards, and hoping for answers :)
    Cyprianek

    #1486 Reply

    Cyprianek

    Hello dr Ben,

    I’ve got just one more question to You – I promise – this is the last time :) As You wrote – my son had a good reaction od DMG (more babbling, looking for us, better falling asleep etc.), but my doctor told us that we can also use TMG – so now we are giving him both things. But I am pretty worried if these two could work TOGETHER. I was looking for any information about that and I just found that people often use firstly DMG, and if their kids had poor reaction on that, they start using TMG.What do You think about using these two at the same time?

    Looking forward for any answers,

    One more time thank You for Your help :)
    Cyprianek

    #1493 Reply

    Dr Lynch
    Keymaster

    Cyprianek –

    You may use TMG successfully if your son does not have any mutations in the BHMT gene.

    If you are going to add in methylfolate, then switching to TMG may be a better idea. This will likely reduce the potential for side effects – they still exist with methylfolate – but less so if you give something like TMG vs DMG.

    TMG is also less expensive –

    If your son has a reaction to methylfolate – reduce the amount – start low and work up. If he gets crazy with it, then you can neutralize the reaction pretty quickly with niacin.

    Learn more about methylfolate side effects here

    Pets are great – but it is best to have 1 or 3, 4 or more. For some reason, children with 2 pets tended to become more allergic. Doesn’t make sense – maybe a bad study but something to think about.

    Be sure to feed your son as many dark leafy greens as possible as these contain methylfolate.

    Folic acid is not what you want to give.

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