No announcement yet.

5 Yr Old Diagnosed w/ Myotonic Dystrophy via Amniocentisis

  • Filter
  • Time
  • Show
Clear All
new posts

  • 5 Yr Old Diagnosed w/ Myotonic Dystrophy via Amniocentisis

    Hello to all,
    I have a 5 year old son who was diagnosed with Myotonic Dystrophy through amniocentisis. The amniotic fluid revealed that he has approxamately 3000 repetitions of chromosome 19. After birth, he was very weak and almost couldn't eat, and had jaundice. And today, at age 5, he is (according to doctors of modern medicine, healthy as a bull, with a tilting growth arch high above his peers (I forget the percentile).
    Today he is a two word vocabulary
    He is disrupting in class, often aggressive towards family members, distances himself from others, or jabbers alot to himself.
    His diet is extremely limited to Ravioli, potatoe chips, milk, some juice, some yogurt and lots of chicken nuggets. He have tried so desperately to get him to eat new things. His nutrition is an extreme concern for me, but I can't seem to find any help. The doctors all say "As long as he's growing and gaining weight, he's fine." I don't buy that at all. Worse yet, any dietary recommendations made by any of you out there would be even more challenging than, say, trying to get him to eat spinach!
    He is currently in kindergarden under the special students program, and has always been in special programs, to include physical, occupational, and speech therapies. He has seen specialist after specialist his entire life. My wife and I, as a last resort, have recently completed a questionaire to apply for assistance from the Center for Autism and Related Disorders (C.A.R.D.) to see if he can be evaluated for autism. Although, in my opinion, my son dispalys certain aspects that define austism, my wife (in my opinion, living in denial) strongly disagrees with this process, but is willing to do it for his benefit.

    I have only recently discovered Holistic medicine, homeopathy, and some of the success stories. I am truly interested in seeking alternative approaches to the problem, that to me, does not seem to be that of a physical (speeking in generalities) problem. To me, it seems to be a chemical, or physiological imbalance. My first thoughts of this first came when my son's pediatric physician mentioned that "because" of the many "individual" affects that the dystrophy causes in the body, the cumulative affect can possibly cause autism. My theory was again re-enforced after he had an MRI performed to his brain, and all the results came out normal. What I keyed in on was what was said. "Your son's brain is "phiscally" perfect without any abnormalities."

    As I end, please forgive my illiteracy and lack of education, or knowledge to properly discuss this. I am simply a deserate parent who has been shown a new, brigt and shining light in the future of my son. So, take it easy on me. I seen some of the baggering threads already.

    Thank you to all who are considerate, and caring enough to respond in a thoughtful manner.

    I understand that this a genetic problem, but I have read that, with proper treatment through holistic medicine, the affects of the supplemental chromosomes can be practically elliminated.

  • #2
    I have dealt with some

    of these problem children and found that the Nosode Tuberculinum often applies as does the remedy Baryta Carb.

    Is there any TB family history in the last 4-5 generations?

    As Kent said , ignore names that are applied by the orthodox medics. Homeopathy deals with individuals.


    • #3
      Hi Ezzeljm,

      Yes your son can be helped with one or a series of indicated homeopathic remedies. there are quite a few good homeopaths in Florida.
      Do seek one out and have your son's case closely monitored.

      Dr. Judith Ullman has written books about homeoapthic help for children with behavioural problems related to possible ADD, ADHD and Autism. You could google for where to buy them and read. IT would give you an idea of the homeopathic process.

      Its essential that the child continues to get occupational therapy and whatever supportive therapy is reuqired for developing his learning skills even while on treatment This interview could give you an idea as well:

      All the best!
      D.r leela


      • #4
        5 Yr Old Diagnosed w/ Myotonic Dystrophy via Amniocentisis Reply

        Thanks to both of you for your response. I am most thankful for those caring enough for others to give of themselves. . . . .
        In response to the TB question (assuming that you are refering to Tuberculosis, the answer is no. Although my wife was infected with Tuberculosis from a co-worker in 1995, and cured under a 9 month treatment, with a required annual checkup. Do you believe that if my wife contracted TB, that this could have an "exponential" affect when combined with the Myotonic Dystrophy, on the fetal development, and birth of my son, Alejandro?


        • #5

          dear ez
          yes tb can be passed on via birth in fact it can be passed on to 7 generations,what ever allopathics give for it does not cure tb only suppress it,dont be fooled.
          my question is was your child vaccinated? many have adverse reactions from the vaccines and the symptoms you mention sometimes do not show up till later in years (autistic tendency's)
 (autism or vaccine in searchbox)

 (directory of hom. in florida)
          Best of luck
          Gina Tyler


          • #6
            5 Yr Old Diagnosed w/ Myotonic Dystrophy

            Dear Gina,
            Thank you so much for responding. Yes, Alejandro (Alex) has been vaccinated. With the collection of information that everyone is giving me, It sounds as though the damage is done. It will be hard to share this information with my wife, as she is familiar with "naturalistas" in Spain, and does not have much faith in it, she also caries a huge load of guilt on her for having not known, and having given birth to a child with it. I try presenting new (or alternative ideas to her, but she rejects them. I am an optimist, and she is a pessamist. She feels, as far as I can understand, that "what is done is done and can't be changed". She seems reluctant, but willing to try something different for his sake, and his sake only. . . . .ooohhh, where to go now. . . . .


            • #7

              hello ez
              there is a homeopath that has alot of expierence in florida,i know him personally.
              here is his website do give him a call you will not regret this,and yes one must do everything possible and never give up no matter what needs to be done.
              homeopathy has been around for over 200 yrs with fantastic results in the antidoting of the vaccine toxins,but one must find a practicioner with great expierence so if that requires some distance drive then do so.
              I do believe he does take insurance.........................
              by the way i have seen personally the effects of homeopathy on the detox of vaccine adverse effects,so there is hope.
              Gina Tyler