Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

23 and Me (what does it mean) results out please support my non verbal child

Discussion in 'Genetic Testing and SNPs' started by Abrighterday, Jun 15, 2014.

  1. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Dear All,

    I would be so grateful for any advice ,support you can offer my daughter.
    Blessing: age 4,non-verbal,ASD.
    ++= VDR Taq; MTR A2756G; MTRR A664A; AHCY-01,19.
    +-= COMT P199P; VDR Bsm; MAO-AR297R; MTRR A66R.
    Hpylori and high oxalates as well.

    Would you kindly give some support that might give me more insight about her needs,what can be given what does she need ,what would she most likely not do well on.
    I know this is an adult forum I turn to you ..for more insight .We have done DAN route.She lost the few words she had on this protocol of ALA high dosage.Discovered that so many things should have been put in place before going down this route.
    I am in a lot of debt at the moment and in fear of losing my home.If I could have some direction .I might just be able to get things going in the right direction.
    I will continue to work with the so called professionals.I just need to arm myself with more knowledge instead of being fleeced at every opportunity.

    Thank you.
    Hope
     
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,816
    Abrighterday likes this.
  3. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Thank you for your reply.I read up and I am learning more each day.We have dark skin and do need vit D I have always refused sun block. my daughters calcium levels always showed very high .I was told to stop supplementing even though we are on GFCF diet.
    My understanding is that she needs Bs and folinic acid,and Vit Ds.My doctor says she does not need any of these but I don't think he has any understanding of anything at the moment.I will try to understand it better.
    Once again thank you.
     
  4. Helen

    Helen Senior Member

    Messages:
    2,068
    Likes:
    3,188
    Hi @Abrighterday,

    I think this chatgroup set up by Dr. Amy Yasko, who has a huge experience from children with autistic syndromes and their genetics, could be of help for you : http://www.ch3nutrigenomics.com/phpBB3/welcome.html . Her full protocol is rather complicated and expensive but many parents give advice of good alternatives. I hope you will get hope and help from this group and its members. All the best to you and your daughter!
     
    taniaaust1 and Abrighterday like this.
  5. brenda

    brenda Senior Member

    Messages:
    1,938
    Likes:
    1,467
    UK
    Actually l like AutismWeb Forum.
     
    Abrighterday and Helen like this.
  6. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Thank youI will go onto her group I will get a friend to help me write out my thoughts ,to be sure i am understood.I forgot my pass word so couldn't reply you .Earlier then got side tracked.I am grateful that you have given me some time.Why is everything so expensive.If it for the quality maybe but the list of items scares me.Thank you
     
    Helen likes this.
  7. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Thank you I will go onto that group as well.I want to do what I can for my daughter.I am sorry I am replying this late I forgot my password .Thank you for your time its kind of you .
     
    brenda likes this.
  8. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,022
    She also needs vitamin K2 to absorb the calcium into cells. And magnesium. Always take these if you are taking vitamin D.
     
    Abrighterday likes this.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,733
    Sth Australia
    Did you get those results by running it throu genetic genie? If you didnt that gives treatment advice too (well used to anyway, Ive no idea if it still does).

    On my genetic genie results (I have Aspergers), Interestingly I have many of the mutations your daughter has there.
    ....

    On my report it says

    Maybe that Respen-A would be worth a try?
     
    Abrighterday likes this.
  10. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    I am so pleased for your reply I think i have written that well my english I have to think in two mother tongues and then change to english.I am now doing this .to be honest I dont really understand all the genetics but I wake up pray then try to do some reading .I am not very academic but I am trying .thank you for your time.we use tiny amount of mag citrate i am increasing it gradually
    Thank you
     
  11. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    You have some of the things my daughter has oh special greetings I am trying with my english but i am sure you get the gist .My daughter is non verbal though.Are you a happy person my daughter is a happy nice child I love her a lot.You definitely are kind.Thank you for spending time on my daughter . i will look into what you have suggested.I must try really hard for my daughters care.
     
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,733
    Sth Australia
    Yes Im geniunely happy even thou I have Aspergers (thou some do get grumpy with it).

    Your daughter is lucky to have such a good mother, I hope you find something which helps thou even being non verbal may not end up being a huge a issue as you may think it is. Ive met and chatted online to other Aspergers people at wrong planet (the biggest Autism/Aspergers support forum) a couple of those Ive chatted online too (written) werent actually at all verbal yet could hold good online written communications.

    best luck
     
    merylg likes this.
  13. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    okay i cannot write you a thank you.A really top person said that I should click like and that says thank you .Im not happy because i want to say thank you .The top person will chat with me to help me use this forum better .I wish i did not make people spend time on me.I am happy you are happy its important.I was going to ask you some questions but i am going to write them down to be sure .I must do that later .i did do it through 23 and me genetic genie i couldn't understand .i have to try really hard on that one but you do understand .Thank you after today i might not be able to write thank you. so if i click just i like button you understand i am saying thank you as well.
     
  14. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Hello I have been looking at your genetic trim .Do you need vit d and if you use it how do you feel.Do you use magnesium? what supplement do you really find useful.I know she will speak because she sometimes says a word but then might never use it again,her understanding gets better all the time.I have done AIT,ABA,Sensory therapy as well as all these supplement .i will always do my best for her.my friend helped me get this written
    If you do find time please do explain more of how you feel

    Thank you
     
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,904
    Likes:
    12,733
    Sth Australia
    My D is a huge issue, it is usually extremely low (not just a little low), even with standard daily D supplementations of 2000 IU daily.. after 5 mths when I had another blood test, it was even lower then before! Im now on 4000 IU per day (and havent been blood tested since so Ive no idea if this is helping get it up more or not). Something uses all my D up as that other D ..D2? level is in average range but my D3 is bottomed out. (Its probably something to do with having ME/CFS?? and my body having to fight something??). Anyway.. so far Ive never been able to get my D into a normal range and the D3 supplements havent helped.

    Ive tried magnesium for a year (I had to take the organic pill form of it as I had a bad reaction to the other) but it didnt seem to help me in any way, so I no longer take it.

    I havent tried to work on anything yet with my gene mutations except with a couple of the bad ones you daughter doesnt have and working on those did help. (I'll be trying more in the future).
    .......................

    quote is from my genetic genie report
    "

    This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens.
    COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior."

    I have polycystic ovulation syndrome which gives me estrogen predominance. This is a NIGHTMARE for me to have with that COMT mutation as I struggle with the estrogen and with some dietary problems, the combined situation with the COMT, PCOS and diet issue along with maybe chemical sensitivity I also have, it was flipping me out so much right at the time of my that I even got into trouble with the police. I was loosing control and hitting people. Im fortunately able to deal now due to working out my diet issues.
    .......

    One thing I do have to say is be careful with vaccinations, I had a friend whos baby went very autistic within 24 hrs of having a vaccination and it was very clear to see (the baby never smiled again). My daughter and father also have aspergers but my daughter never had a vaccination so obviously that doesnt cause all Autism (but I wonder if my daughter would be far worst if she'd been vaccinated).

    My aspergers daughters daughter. I thought she had Aspergers too as she wouldnt look at peoples faces and always looked throu people, she'd talk to people but wouldnt be ever looking at them when she did. One couldnt even ever get a photo of her looking straight at a camera. She was like that from baby till 3. She also had no safety sense.. she'd jump off a very high thing at 3 and had to be constantly watched. Now at 4 years old thou (she's actually the other week turned 4) , fortunately she's now acting normally and now can look at peoples faces.

    She used to also when at the playground due to seeming not to have sense of the other children, when she wanted to get to something and started running, she'd run the other kids down (even kids twice her size) if they were in the way of the line she was making for the thing and then was like she had no awareness she'd knocked a child to the ground.

    She seems to have come good and the autistic traits she had have vanshed. Her great grandma has been taking her to weekly swimming classes with other kids for a year since she turned 2 and a half or 3, maybe that helped?? **fingers crossed**
     
    Last edited: Jun 29, 2014
    Abrighterday likes this.
  16. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Thank you .I read recently that vit k is also needed to support vit d it was on autismweb and a link was given.To further agree with you definitely the injections make it worse.My daughter reacted to all injections but I did not understand then,now i do.I did not give the 3 year old injections though.When she was a baby she did same thing not looking but now she can look and respond .I am taking all your help and will study harder.I have to explain I am not very educated but in am trying so hard.I think my my english to you is understandable .Thank you.I am going to do AIT again for my daughter 10 days it helped .From her shaking her head and humming loudly .you could hear her down the street I was so unhappy then. I did the therapy and it worked.it helped her sensory .My daughter does not know how to play yet with another child.She jumps happily next to them sometimes.The other day she sniffed a child.I have the book out of synch child so I understand why she did it.I sold my car for the AIT .I do not need it and my older child who i had to leave promised me she will one day buy me a car so i wait for that .I am clever but not educated a lot this is my problem. Education is a privilege not a right,I wish i had the right to a good learning when i was growing up.
     
  17. Abrighterday

    Abrighterday

    Messages:
    20
    Likes:
    8
    Hello i was wondering about your picture.Who is that picture ?
    I looked at her results and magnesium is very low I have started using a bit more magnesium citrate .Thank you you were right for me to use it.
     
  18. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,022
    Just a picture of a neanderthal I found on the Internet.
     

See more popular forum discussions.

Share This Page