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Forum -> Children's Health -> Vaccinations
Genetic deletions, duplications, mutations etc.
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amother
Maroon


 

Post Sat, Sep 14 2019, 10:02 pm
What about mthfr mutation? All alternative doctors (only one that was able to help me with my child) said with that body cant get rid of toxins which could cause damage. My sons body full of toxins which caused him many issues. But go tell that to a medical dr...
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ggdm




 
 
    
 

Post Sun, Sep 15 2019, 4:31 pm
blomme wrote:
1. Yes, there aren't information on the effects of vaccinations on the deletion or any genetic abnormalities I know of
2 & 3. To consult a specialist would be pointless if they aren't armed with the necessary information (studies) as there are none.
4. Studies on the condition is on going. They just launched a study in the use of specific magnesium to help curb symptoms created by the deletion, which includes the NIPA1 and NIPA2 (the magnesium transporters). I initiated that and started the Facebook group. We currently have 180 members.
I would still assume that a medical professional who spends all his time in that area knows more and has a better overview of the literature and more background to frame the information than a patient who is not from the medical field. But of course, I don't know you. May you be/stay healthy!
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whewpy




 
 
    
 

Post Sun, Sep 15 2019, 4:39 pm
Who is Samuel Anteby?
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blomme




 
 
    
 

Post Sun, Sep 15 2019, 5:38 pm
ggdm wrote:
I would still assume that a medical professional who spends all his time in that area knows more and has a better overview of the literature and more background to frame the information than a patient who is not from the medical field. But of course, I don't know you. May you be/stay healthy!



Never underestimate the determination of a parent to find answers and solutions doctors and specialists aren't prepared to spend time to get to know.

My daughter was suffering from multiple allergies since she was but 6 months old I.e. dog hair, cat hair, horse hair, wool, feathers, dust mites, pollen, milk.

We found that the antihistamine(s) had a way of impeding on her ability to speak. When I asked a neurologist about it, she was diagnosed with absent seizures, he said no. But as soon as we placed her on homeopathic antihistamine rather than the conventional (also placed her on gfcf diet at the same time due to milk allergy and for good measure gluten too), she started to say her first words two weeks later. She woke up the morning and said "I am not tired" as she was sitting on the loo half a sleep. Both me and my husband was shocked. That day she sang in front of the TV jumping up and down with joy, singing "Old mac donald had a farm, he ya he ya ho..". She was filled with joy compared to seeing her crying the one time - she saw other kids sing on TV and she couldn't. This was in 2012/2013, she is now 12 years old. I do not believe it was the milk or the gluten because 6 months after I started treating her for allergies (started September 2013), she went back onto milk and gluten foods and had no problems I.e. her speech was still there. The immunologist, when I was looking for a solution at the time, told me getting rid of all her just can't be done. But, I did just that! I got rid of all her allergies and she's been antihistamine free since 2013 and she can still speak.

Point is, at every turn I was told it is not that, it can't be done. I proved them both wrong.

My son suffered from anger issues and anxiety. Cried a lot and took longer to calm down. He was so aggressive he once pulled a knife on me, he was about 5 or 6 years old at the time. The child psychiatrist placed him on Risperdal, I was devastated and angry. I felt so much anger at that meeting that if I just moved one muscle in my body I would've lost control and I would've physically attacked someone. It took much effort on my part to control myself and my emotions at the time. I can not remember ever feeling like that ever. It was very hard. There were more meetings. I once asked her what she thought could be the reason for his anger issues and outbursts, she simply said she didn't know. Just like that, she didn't know. How is that supposed to help anyone. it took me 2 years reading here and there about what causes there could be. We tried magnesium citrate as it was supposed to help improve mood and I added selenium too. But it was not good enough.

Then I had a paediatrician ignoring me when I told him to check my son's iron levels as his complexion looked so white in the sun and he had red under the eyes. He told me not to worry and that the red under the eyes where just blood vessels. I insisted on it and he did, he found my son's ferritin was very low and his Fe-iron was very high. Yet again, I was right! Then he said to me to stop all vitamins even after I told him I am not giving him anything with iron in it, so I did, and the situation got so bad, weeks later, that he started crying in the mornings, by the Friday he was so tired he just crawled onto the couch and fell a sleep. I kept him home that day. Then, my husband found something that related to our genetic deletion. The NIPA1 and NIPA2 are magnesium transporters that are part of the 15Q11.2 genetic deletion I.e. it is deleted. We jumped in the car and drove to the closest health store in Afula (Israel) and asked them what they could recommend in terms of magnesium that is easiest absorbable and can pass the blood brain barrier. They gave me magnesium taurate.

Ever since I started him on the magnesium taurate (and give selenium) he's been a different child. Much happier. No aggression problems, he doesn't hit me, his sister or other kids anymore. He is not possessive towards me and his teachers. And best of all, it got him off Risperdal. He's been drug free now for, I think, 3 years. I have lost track of time.

I, now, have a good relationship with that same child psychiatrist who wrote out a report for both my kids on their deletion and that they require the magnesium taurate and selenium.

Today I run a Facebook groups for parents like us regarding the magnesium transporters that are deleted that forms part of the 15Q11.2 deletion. I had one mom thanking me. I contacted the lead scientist the other members in other groups talked about and how taking a particular magnesium have made much difference and I am not the only one who could testify to it. He wrote a paper to spark interest in further study. He told me someone called and will be conducting a study on it. That was this year. The geneticist I met here in Haifa a year or so ago, I told him and he was excited. Something as simple as giving a child magnesium taurate or magnesium L-threonate as it is easiest absorbed in cells and can pass the blood brain barrier and can improve quality of life for our kids. If I never questioned anyone and never tried, many parents would not have known this today to help their kids and no specialist would have recommended it. There are 4 other families with this genetic deletion right here in Israel. One of them asked me if I knew a specialist. I referred her to the child psychiatrist I used.

So, as a mother who had to deal with a lot, who had been through much. I do know that specialists can't always help. The interest is not there for real solutions. They are book learned people that are groomed with knowledge to the extent where they only know how to give certain medications for certain problems. Surgeons are a different species. I trust their judgement.

I think I reserve the right as a parent to question everything when it comes to my kids, even a doctor's recommendation.

If I had ever relied/trusted a doctor to the extend that some parents do, my daughter might not have been alive today. She suffered from double pneumonia when she was about 2.5 years old. In one night I took her 4 times to be nebulized by the emergency room. After the 4th time, they wanted to send her home. I gave them hell to book her in to the hospital for care. The paediatrician on call the next day told me I made the right call. Suffice to say we bought our own nebulizer for home use.

Sorry for the lengthy response here but I had to bring my point across to you as to why I am the way I am and why I see things differently than the next person. Some of us just do not have the luxury of accepting second best at times just because someone is not fully knowledgeable on something just because they are a doctor/specialist. Sometimes a second opinion is ok. Sometimes following your gut instincts are ok too.
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