Genetic deletions, duplications, mutations etc.

blomme

Wed, Sep 11 2019, 10:22 pm

I do wish to add my 2c on the subject. People are always quoting "studies say it is safe" and "studies say it doesn't cause autism". Both statements might be true. But here is a little fact no one considers, peanuts are also safe and does not cause problems either as it is a food source. But give that peanuts to someone who is known to be allergic to it, you quickly learn how deadly it can be. The point I am making is that it is not necessarily the vaccine that is the problem but that the problem lies with the child receiving the vaccines. It is never considered that a child could have genetic abnormalities besides a suppressed Immune system when giving. Me and my family have the genetic deletion, 15Q11.2. Both my kids are autistic because the deletion makes them vulnerable. I also have the deletion plus the 15Q11.1. I got really sick when they gave me a flu shot over 20 years ago, so I don't give it to my kids. My daughter, she is now 12, back in 2017, had her MMRV booster shot, she developed facial spasms from the corner of her mouth down to the base of her neck on her right. It lasted for over a year and a half. My son had motion and verbal ticks and luckily it only lasted for a month and a half. I sometimes wonder how many safety studies were done on people with genetic deletions, duplications, mutations (which includes serepalsy?, Downs syndrome, Angelman syndrome, Prade-,Willy etc.) or are their studies only reflecting healthy subjects. The funny thing about autism is that there are no medical tests other than observation to make that assessment. Here is the thing, lead poisoning also have similar symptoms. A child that can't tolerate gluten and milk will exibit the same symptoms. A child who's suffered brain inflammation for a while could show same symptoms. Not an expert but I would also assume that even processing and detoxing might be another problem to consider when it comes to vaccinations. Personally I don't believe they have enough expertise to even make that call for parents like us. As specially when they indicate they know little about those genetic problems other than what the tests reveal and some symptoms of it they have observed. The fact that people aren't prepared to question anything are worrying.

amother

Amber

Wed, Sep 11 2019, 10:45 pm

Prefacing I know nothing about your specific genetic issues. That said, if you understand you have a genetic mutation that by your own account makes your children more likely to have autism and I'd presume other differences, what makes you think that vaccinations would have anything to do with it?

By your own account, any medication could theoretically have diverse side effects on you and your children if there are are no studies done on a population with your specific biomakeup. Are you concerned about giving aspirin? What about antibiotics? Personally my genetic makeup means morphine has literally no effect. Would you hesitate to let doctors give your child morphine if they needed it?

I'd advise you to speak with an academic expert on your genetic deletion. I'm sure they would be happy to talk to you.(My husband is a medical researcher, they love talking to people who have interesting genetics.) They should be able to give you more insight than anyone else and more than your regular doctor if you really want an unbiased opinion.

blomme

Wed, Sep 11 2019, 11:08 pm

amother [ Amber ] wrote:

My kids are vaccinated. But, If you see something does not gel with your kids it should be advisable to not continue with it. The argument, whether we should withhold other meds in fear of ... ,is irrelevant. It just doesn't fly. You only know there is a problem after the fact. Should we ignore it simply because it is socially acceptable to do so?

amother

Amber

Wed, Sep 11 2019, 11:34 pm

blomme wrote:

My kids are vaccinated.

Glad to hear it!

blomme wrote:

But, If you see something does not gel with your kids it should be advisable to not continue with it. The argument, whether we should withhold other meds in fear of ... ,is irrelevant. It just doesn't fly. You only know there is a problem after the fact.

Honestly if my children have a problem I think I'm observing, I would generally discuss it with their pediatrician and possibly a specialist.

blomme wrote:

Should we ignore it simply because it is socially acceptable to do so?

I don't think you should ignore anything merely because it is socially acceptable to do so. It makes sense you have questions, but based on the fact you are polling imamother for popular opinions on a specific rare medical condition makes me question whether you are properly sourcing your medical knowledge and information? Just a thought.

blomme

Thu, Sep 12 2019, 12:04 am

amother [ Amber ] wrote:

Honestly if my children have a problem think 'm observing, would generally discuss it with their pediatrician and possibly a specialist.

In my experience they are not knowledgeable on the subject. Regardless what problems you might experience after they simply ignore it.

amother [ Amber ] wrote:

the fact you are polling imamother for popular opinions on a specific rare medical condition makes me question whether you are properly sourcing your medical knowledge and information? Just a thought.

not specifically on this genetic deletion. There are many tipes and unanswered questions on the topic. If you can point out the medical information, I am yet to find, I would be most grateful. But, even any medical findings whether a child is able to cope with vaccinations or specific vaccinations can not speak for every single child as the test they do are on limited amount of children, it is but a ball park of what can expect in the majority.

amother

Amber

Thu, Sep 12 2019, 12:40 am

blomme wrote:

Most facts in medicine are probably only true for 99.9% of the population at best, so yes you are right technically this doesn't account for 100% of children. The problem is when everyone thinks they are the 0.1% with no evidence to support that claim to the detriment of others. This is especially harmful and problematic when these unfounded claims prove to be a very real serious and potentially deadly public safety risk for truly vulnerable persons.

Bzh I will try to ask my husband about research on drugs and genetic mutations but I'm sure the literature is quite vast even if not on specific case.

Edit: just to clarify for anyone else who reads, when I say it could be there is 0.1% chance of something... that doesn't mean there is 0.1% chance of a child getting autism from a vaccine. It means there's a small chance of some nonspecific difference in reaction from the norm. If I said "there is a 99.9% chance that orange juice won't hurt you" that doesn t mean there's a 0.1% chance drinking orange juice will cause autism. There is NO correlation.

blomme

Thu, Sep 12 2019, 12:53 am

amother [ Amber ] wrote:

Yes, my sentiments exact. It is why I was not referring to all children. In most cases the observation of mothers are ignored for the greater good at the detriment of the child. Sometimes the problem is not big and can be ignored as the child recovers, but what is not acceptable is when it is ignored when the child takes a very long time or don't recover. As specially those who suffer violent seizures. The problem with the system is is that young infants aren't genetically tested till later in life when there are problems. Speaking of just vaccination right now off course. You can check out the CDC and VARS websites for more information on side effects on vaccinations. In each vaccination the CDC specify that there is always a chance of injury or death.

amother

Amber

Thu, Sep 12 2019, 1:21 am

Because my husband and I are apparently insomniacs tonight(well he's working, I'm the insomniac) regarding drugs and genetic variations my husband just gave me a lecture which is way too complicated to write about here and I barely grasp everything he said BUT...

Apparently there is an entire field of study called pharmacogenomics. In short from Wikipedia because I have trouble condensing what he told me "Pharmacogenomics analyzes how the genetic makeup of an individual affects his/her response to drugs."

He also said there's two types of research basically in this category. One is most common, how drugs might be entirely ineffective based on an individual's genetic makeup and the second if I remember correctly deals with possible adverse reactions to drugs based of genetic variance.

I'm not gonna go into all the research he's seen about it because I can't be relied upon for accurate recollection but if you're interested it might be worth reading about. It doesn't sound like there's much research that might be relevant to your specific situation but might be interesting anyway to know what research is ongoing.

blomme

Thu, Sep 12 2019, 1:38 am

amother [ Amber ] wrote:

That would be interesting.

blomme

Thu, Sep 12 2019, 1:42 am

I understand that it could cause panic amongst parents talking about it. The only advice I can give is have your newly born baby genetically tested and take it slow with vaccinations if they find a problem and look out for any problems. I have heard of some cases where the baby was given 7 shots all at once and the baby died not being able to handle it. Another one died after receiving 13. I am also pro vaccine but anti ignorance in this regard. There is a balance to be struck on this conversation.

amother

Goldenrod

Thu, Sep 12 2019, 1:59 am

blomme wrote:

When it comes to Genetic deletions, duplications, mutations etc. and vaccinations. What is your take on the subject/experience?

My son had reactions to vaccines and afterwards we took him to Samuel Anteby in Flatbush
to reverse the effects.

Please realize that most doctors and people are into themselves and will hardly hear what
you say....

I am not against vaccines as a whole, but the whole thing is unfortunately done Mafia style, including the schedule and the no side effects rule.
Can there be anything in this world that is good for everybody?
One man's medicine is another man's poison: Known since Shlomo Hemelech but conveniently forgotten by today's medical field.
Most medical studies are too black and white to be trusted. Read the fine print: they are all in the same style: there is an unspoken protocol. There is a fear of
upsetting some upper hierarchy.
That being said: Many non-vaxxers should be vaxxing, so there should be more leeway for the people who must have the vaccination exemptions.

lcraighten

Thu, Sep 12 2019, 5:27 am

blomme wrote:

So sorry to hear about your hardships, but you are the prime example of people who need Herd Immunity. If your children medically can't receive the MMR vaccine (and others) then you definitely need everyone else to be vaccinated.

ggdm

Sat, Sep 14 2019, 1:06 pm

1. There are many many things about the human body we don't know yet. It may absolutely be possible that certain genetic conditions make vaccination a bad idea for a person who has it. Genetic testing may or may not help here at the moment. Mostly, I think we just don't know enough (yet). Fortunately, only few people suffer from such conditions, so this means in general, vaccination is still good advice.

2. Studying rare genetic conditions is hard, because they are rare. And there are many. Don't be too disappointed if you don't find papers and studies. Maybe there simply aren't any. I am sorry.

3. A GP or ped is not a specialist. She will not (and really cannot) know everything about your condition. She might not even know the first thing about it. You need to consult a specialist and advocate for yourself. That is normal. If your GP/ped refuses to listen to the specialist, that is a problem and you should find someone else.

4. A medical condition that prevents you from being vaccinated is exactly why others need to vaccinate. If there are no studies about your condition and vaccination, there probably aren't about your condition and the illness. We can only eradicate the illness (and thus btw the need for vaccination against it) when enough people vaccinate.

blomme

Sat, Sep 14 2019, 2:59 pm

ggdm wrote:

1. ...It may absolutely be possible that certain genetic conditions make vaccination a bad idea .... Genetic testing may or may not help here at the moment. Mostly, I think we just don't know enough (yet)...

2. ...Don't be too disappointed if you don't find papers and studies. Maybe there simply aren't any. ..

3. .... You need to consult a specialist and advocate for yourself. .

4. ....If there are no studies about your condition and vaccination, there probably aren't about your condition and the illness. ....

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.