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Hi to all,

Would you like to tell me if anyone had experience with quantum medicine in DMD?

Is it possible that those treatments can improve life quality?

thank you in advance,

Tanja

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Quantum medicine covers a wide range of medicinal approaches.  For Joshua, we have a naturopathic approach.  He is on a variety of supplements, his diet is a high protein / low starch, and we also do Reiki with him (which works a lot better than only regular physio does).  Here is a link of all it covers.  Many depend on physicians to direct them where they should go in regards to treatment, but some of us just like to take a different approach! 

Take care,

Naomi

Der Naomi,

Thank you very much for sharing.

I hope that the treatment is helping Joshua. I wish you all the best.

We will try with Bio resonance approach in Ukraine. In case you are interested I can update you what are effects.

When there is no other suggestion different approach is like light at the end of the tunnel.

Kind regards,

Tanja

Hi Naomi,

Hope that everything is fine. we receive the news this month that our 4 years old son is with DMD. We have just started with Idebenone and Protandim. But don't know yet when to start Deflaxacort. Can you explain me more regarding the naturopathic and which variety of supplements could you recommend us?

Kind regards

Gonzalo

Hi Gonzalo,

Joshua started Deflazacort when he was 3 years old.  With that he also started Levocarnitine.  Once the medication became routine, he started on supplements about 1 - 3 months apart from each other.  (The list of what he takes daily now is posted on my page.)  He also took Protandim for a couple of years but once he got to the age of 6, we started to see the improvements from it subside.  Every person's body has different needs so you would have to find what he needs to balance.  We did it by researching.  Every supplement needs another to work properly.  For example; iron needs vitamin B12 and folic acid.   We also changed his diet to a "Real Food Diet" which does not entail any ingredients you can't read!  We stopped purchasing instant foods and started making our own breads, snacks, everything!  We started shopping for meats, veggies, flour, eggs, etc at local farms and businesses.  We also increased his proteins and decreased his starches as much as we could.  Before he started the new diet, some (very slight) scoliosis had begun but the haven't seen any since the diet change and supplement list started.  He has no scoliosis at all now.  He receives physio at school and at home we do Reiki. Many of the treatments have a lot to do with the way we think whether it is homeopathic or medicinal.  The more negative a person is, the more will go wrong and the more positive a person is, the better they will feel.  Joshua was told he has DMD from the time he was diagnosed at 6 weeks.  It has never been a secret and he is able to tell us verbally how he feels and where when something isn't right.  They have to get to know their own bodies because they are the only interpreters they have.

Hope this helps somewhat!

Naomi

Hi Naomi, 

In my case Juan is 7, how do you manage Internet and google?, I mean it could be easy for a kid to search for "duchenne" or "dmd" and read about wheelchairs and early death cases.

Any advice here?

Kind regards.

JP.

Hi Juan,

Joshua is 9 and he knows that his, and every disease out there, can cause death.  It's on commercials, television, and even in school.  He's met a 34 year-old whom is bed-ridden because of it.  He's seen pictures of a 54 year-old man with DMD!  He has asked us if that will be him when he's older and we tell him, "That's completely up to you because it is your body & everyone is different.".  The more people he knows who have this disease, makes him feel less alone.  He knows he may need a wheelchair later in life, but it is up to his body to know when.  We live in the here and now.  The future cannot be assumed.  Joshua listens to his body and follows what it tells him to do but he always tries something physically new once. (He listens to his body more than me!)  As for internet, he rarely looks it up just because when he has questions, he feels free to ask us instead of looking it up.

Naomi

Hi Naomi

Many thanks for your answer and good recommendations. It's a nice practice that also we share, that mind is powerful and it's better to be positive. Also to listen to his body, he is the best interpreter, we are working on this with Joaquin. 

He is now expressing us what he feels, so is easier for us to help him.

Regarding JP question, it is not easy to deal with that, before reading your answer it was difficult for us, my wife and me. We were preparing of how we are going to handle this, could be also that we had receive this news one month ago.

Now, that we had arrive to PPMD and sharing other people experiences help us a lot.

Many thanks to share this with us

Kind regards

Gonzalo

Thank you Naomi.

Joshua's mom said:

Hi Juan,

Joshua is 9 and he knows that his, and every disease out there, can cause death.  It's on commercials, television, and even in school.  He's met a 34 year-old whom is bed-ridden because of it.  He's seen pictures of a 54 year-old man with DMD!  He has asked us if that will be him when he's older and we tell him, "That's completely up to you because it is your body & everyone is different.".  The more people he knows who have this disease, makes him feel less alone.  He knows he may need a wheelchair later in life, but it is up to his body to know when.  We live in the here and now.  The future cannot be assumed.  Joshua listens to his body and follows what it tells him to do but he always tries something physically new once. (He listens to his body more than me!)  As for internet, he rarely looks it up just because when he has questions, he feels free to ask us instead of looking it up.

Naomi

Hi Naomi, I just saw your discussion on diet and a more naturopathic approach, and I am so delighted to know there are others out there like us. I would be very interested to know what supplements you are doing, and what type of diet you have.  I am a new Reiki Master of 18 months, however, have not managed to do a lot of this, and are not able to work on Dylan due to my stress levels in last year since having to start work full time again, after my husband's business ended.  I still do absent healing on Dylan, the family and friends, and the Duchenne community, and am slowly working on myself so I will be in a position to do this at some stage in the future, but it takes time.

We did start the GAPS diet since dylan is adhd ish, he is 9 years old, has deletions in exons 3-7, so luckily for us seems to be progressing slower than others with deletions at the other end of the gene.  We all did it for 6 months, it was high protein, no complex carbs, lots of veges, coconuts, probiotics etc.  We did not notice such a huge change in him mood wise, but knew he was a lot healthier.  Unfortunately since working just havent been able to manage it as requires major food prep and my husband who is now the mum, just finds it too much to cope with.  So we try to eat loads of veges, but do have alot of carbs now as they are cheaper and easier of course. We do a healthy smoothie in the mornings with soaked chia seeds, blackcurrant powder antioxidant, acetyl l carnitine, maganesium, glutathione, flax seed oil, ground nuts and seeds, juice, banana and blackcurrants. 

Dylan has cranio sacral therapy for his jaw, neck and spine, homeopathy, and energy healing with a light worker healer (aka Hands of Light - Barbara Brennan).  We are just keen to try anything that we think may help and have very open minds, which we dont tell many people about to be honest, as they would think us totally wacky, however, it enables us to cope and feel we are doing 'something', plus loads of supplements etc.

Anyway, have gone on far too much and may have scared you off! Really look forward to knowing what you do and if there is anything else we can possibly try as time goes on.  Gosh your son has had a different journey to ours, Dylan got diagnosed at 8, so it has been very new to us, and has taken us nearly 2 years to sort of come to terms with it , if we ever do.  Would love to know more, as only just able to reach out now since the diagnosis and looking for like minded people to swap stories with.  Kind regards  Debbie Schneider

Joshua's mom said:

Quantum medicine covers a wide range of medicinal approaches.  For Joshua, we have a naturopathic approach.  He is on a variety of supplements, his diet is a high protein / low starch, and we also do Reiki with him (which works a lot better than only regular physio does).  Here is a link of all it covers.  Many depend on physicians to direct them where they should go in regards to treatment, but some of us just like to take a different approach! 

Take care,

Naomi

Hi Debbie,
The list of supplements Joshua is on, is posted on my page. As for diet, we all eat a real food, high protien, low starch diet. Tortillas & bannok, tofu, soy milk is much easier to digest, the meat we eat come from local farms. We rarely eat out and we prefer non-packaged foods so we make the majority of what we eat. It does take a little extra time, but in the long run, it's cheaper because the food lasts longer and is easier to digest because the toxins aren't there to build up. Once the diet became regular, it actually took longer to heat up packaged foods.

Joshua is now 10. We saw his specialist yesterday and he is considered to be 5 out of 5 for physical health. His calf muscles are enlarged, of course, but not hard, and his triceps are very mildly affected. Those are the only progressions he could find.

If you have any questions or suggestions, please feel free to ask anyone here. We're all playing the same game on different fields.
Naomi

Hi Naomi, thanks so much for getting back so quickly, just another couple of questions - is Joshua fully vaccinated? Is he on steroids? I printed out the info on quantum medicine and great to see others using similar things, as you say we are all playing the same game.  Will check out your page.  We used to eat organic, and raw, however, cannot afford it at present due to major cut in income.  Great to see that this stuff is making a big difference to your son, our health professionals are very negative about anything alternative, and we have been very much on our own path, and other parents not aware of this, so refreshing to meet others on the same wavelength.  Have a good evening, our day has just begun and I am off to work.  Regards Debs

Hi again,

Joshua is on steroids but has not received any immunization shots. If they are live vaccines, they are highly not reccomended when on steroids. It too is a personal decision though.

Naomi

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