[holly40]

Hello,

I have a very sad tale of some folks i know that essentially have been lied to about their child. There is no doubt he ( about 45 now ) suffers from 22q11.2 DS. These folks have been told his illness is from cocaine abuse, I am guessing his abuse lasting a few months when he was younger. He has schizophrenia as his major symptom. However this is only one of about a dozen he has which points to 22q11.2 DS. Does anyone have any ideas on how to let these folks know they have been lied to without breaking their hearts that it is a genetic issue? Also where in the North East can he get expert testing?

Thanks,
Holly

[Elysium]

I wish I could help, but I don't even know what "22q11.2 DS" is...

This leads to my question though.....

What is 22q11.2 DS?

[lynn P.]

Hi holly40 - welcome to PC and nice to meet you. The old saying, "you learn something new everyday" is so true because I've never heard of this before...I had to look it up and I love learning new facts. I was a bit confused - I don't know if you're trying to say this syndrome isn't genetic or just the person you're writing about isn't? Maybe you could give us more history. Here's a link for others to learn what this is:

http://www.physorg.com/news197218264.html

[Elysium]

Actually, I just googled this so you don't have to explain it to me now.

I still have a question though....

How do you know that his conditions are 100% genetic? According to the paper I looked over online, it states that this syndrome is not always genetic. In fact, it states that it is more often a random event.

Can 22q11.2 deletion syndrome be inherited?
The inheritance of 22q11.2 deletion syndrome is considered autosomal dominant because a deletion in one copy of chromosome 22 in each cell is sufficient to cause the condition. Most cases of 22q11.2 deletion syndrome are not inherited, however. The deletion occurs most often as a random event during the formation of reproductive cells (eggs or sperm) or in early fetal development. Affected people typically have no history of the disorder in their family, though they can pass the condition to their children. In about 10 percent of cases, a person with this condition inherits the deletion in chromosome 22 from a parent. In inherited cases, other family members may be affected as well.

I'm just curious how you are so sure that this person's 22q11.2 DS was inherited from his parents?

[Yoda]

I am confused. Are the symptoms similar to autism?

[elliemay]

Any large research/teaching hospital should be able to test for 22q11.2 DS. The test is not cheap.

Frankly, I think that you might have a hard time convincing someone to do the test if cocaine is in the mix in anyway, especially since the symptoms of abuse of this drug can also mimic some of 22q11.2 DS in the long term.

[holly40]

Hi,
Thanks for the replies. Where Elysium writes, "I'm just curious how you are so sure that this person's 22q11.2 DS was inherited from his parents?" I never said this, maybe someone else did. In 90% of the cases the deletions are random. But ironically this persons sister has a son who has Downs. Where Elliemay writes, "convincing someone to do the test if cocaine is in the mix". This and his extensive pot smoking has totally confused the issue. His brain simply does not work. He cannot add even simple numbers together, also he cannot do very simple subtraction. He had learning difficulties around the time he entered high school. And now his brain simply does not work, unless you are talking about very simple tasks. It seems and most likely is the case where the brain has died sufficiently to render him very feeble minded. The symptoms he has are as follows:
1. Severe mental illness ( as if brain does not function)
2. Squared off upper ears
3. Extremely long face
4. Small stature
5. No muscle tone whatsoever
6. Hyper nasal speech
7. Very long fingers
8. Difficulty swallowing
9. The others like low calcium levels, I do not know either way - I never asked the parents.
10. There are most likely more symptoms, I just don't know what to look for.

But what complicates the whole thing is the parents want to believe his condition is cocaine related. This may take the stress off them that what happened to their only son has nothing to do with them. Spontaneous deletions has nothing to do with them. 10% of the time it is inherited.

The bottom line is this. You can't have something be something just because you want it to be so.

Holly

[Elysium]

Originally Posted by holly40

Hi,
Thanks for the replies. Where Elysium writes, "[FONT=Century Gothic][SIZE=3][COLOR=DarkSlateBlue]I'm just curious how you are so sure that this person's 22q11.2 DS was inherited from his parents?" I never said this, maybe someone else did.

The bottom line is this. You can't have something be something just because you want it to be so.

Holly

My apologies!! As I read your original post, it sounded as if your issue was with the parents being told their child's issues were from drug related issues as opposed to being genetically handed down by the parents.

So is your argument that the parents are being told the child does NOT have 22q11.2DS and instead being told that his issues are strictly drug related? This is what I got out of your most recent posts. And...is this an adult child? Is the child actually 45 yrs old, or are the parents 45 yrs old. I guess I'm a bit confused on the age thing.

I can understand your concern for wanting them to know what is accurate, as far as diagnosis goes, and I read your point that you can't have something be something just because you want it to be so....but are you saying the Doctors are wanting it to be Drug related, or the parents are? Is this about the parent's denial of it truly being 22q or the Doctors denial?

If the parents are in denial, you're not going to be able to force them to see things differently. Whether anyone likes it or not, people are entitled to be in denial and be ignorant to what is really going on. Where it gets difficult is if their denial is harming the individual who is suffering from health related issues.

May I ask, why are you so bent on getting them to see "the truth"? What is your role in this? Is there harm being done to the child/adult child because of their denial? Are they not seeking appropriate medical treatment for this child?

If they are seeking appropriate treatment and the child is not being neglected in their care, then what is the issue with the adults wanting or needing to believe the child's symptoms are from drug abuse?

How would them believing differently change the outcome of the situation?

[holly40]

Hello Elysium

The child is 45 now. The parents have been lied to about their child. But what makes it worse is they may have been used as well. This latter aspect I choose not to go into but if they have been used and they signed off on something let's say it was based on their original premise which was a lie. If in fact they have been used then they need to know he has 22q11.2 DS. I can only say that IMHO the parents have been used as pawns and lied to, for others to accomplish their objective and the result has become one entire mess for many folks.

Holly

[Elysium]

This sounds like a difficult situation.

It's unfortunate that, in this world, others will take advantage of other peoples weaknesses and vulnerabilities to further their own agenda.

I'm still curious as to what role you have in the situation? Are you a family friend, relative, or person who may have been involved in the initial using of these people before you understood what was going on?

And again, what benefit would them knowing that they were used, and that their son's medical issues may not be related to drugs as they have believed all along have on the situation. Would it solve anything for them to have to face the betrayal of others they were supposed to be able to trust. Would it change anything for the better for the health and well being of the adult child? What would they be able to do differently knowing they were betrayed and would the risk of not knowing the truth overpower the hurt and anguish they would feel if they had to come to face it?

Also, what does the 45 yr old have to say about this? Is this person competent or are they delayed developmentally? What are they saying about the situation?

Sometimes, bad things happen and there is a compassionate inner drive to want to make things better for people....but sometimes what we think may be better will only cause more pain and anguish. If the parents are getting the adult child appropriate medical care and he is not being denied the care he needs, you might want to think if it is worth it to "avenge" the parents in this situation as that outcome has some negative consequences for them in regards to pain, and could have negative consequences on you. But if this person is in jeopardy, then you have to look at the moral and ethics of the situation and make a decision which is going to be in their best medical interest.

[holly40]

Originally Posted by Elysium

This sounds like a difficult situation.

It's unfortunate that, in this world, others will take advantage of other peoples weaknesses and vulnerabilities to further their own agenda.

I'm still curious as to what role you have in the situation? Are you a family friend, relative, or person who may have been involved in the initial using of these people before you understood what was going on?

And again, what benefit would them knowing that they were used, and that their son's medical issues may not be related to drugs as they have believed all along have on the situation. Would it solve anything for them to have to face the betrayal of others they were supposed to be able to trust. Would it change anything for the better for the health and well being of the adult child? What would they be able to do differently knowing they were betrayed and would the risk of not knowing the truth overpower the hurt and anguish they would feel if they had to come to face it?

Also, what does the 45 yr old have to say about this? Is this person competent or are they delayed developmentally? What are they saying about the situation?

Sometimes, bad things happen and there is a compassionate inner drive to want to make things better for people....but sometimes what we think may be better will only cause more pain and anguish. If the parents are getting the adult child appropriate medical care and he is not being denied the care he needs, you might want to think if it is worth it to "avenge" the parents in this situation as that outcome has some negative consequences for them in regards to pain, and could have negative consequences on you. But if this person is in jeopardy, then you have to look at the moral and ethics of the situation and make a decision which is going to be in their best medical interest.

Hi Elysium,

My role is none, other than having these folks essentially drop in from outer space with a bone to pick. The mother has been lied to and they have gotten caught up in the agenda of a psychopath. They folks are not run of the mill with a mentally ill kid who is actually suffering from 22q11.2. The psychopath has convinced the mother of what is wrong with her kid and then a course of action was taken to get revenge on the person who did this to their kid. The whole thing is convoluted from the psychopaths point of view, but she (psychopath) needed a team and these folks have been duped. I cannot say what I believe what they did, but it all makes sense. This matter almost collapsed an entire state's police department. Suffice to say, the duped woman and the psychopath have a close bond and the psychopath working in conjunction with the duped woman or the psychopath acting alone, meaning without the knowledge of the duped woman took some actions to seek revenge on another party. Let's put it this way. It's mafia and possibly mafia cops parading around as legit cops at the very least. I know these folks are very well connected and the psychopath led the duped woman who was looking for answers into something that cannot be undone. I cannot prove any of this, but if I had to bet my life on it, I would.

Holly

[Elysium]

My sincere advice is, if you have no role in the situation, then stay out of it.

It sounds really messed up and unfortunately you were somehow put in the position of having knowledge of what was happening. It really doesn't sound like this is your battle to fight. Sometimes you just need to let the chips fall where they may and if the duped party ends up getting hurt then that's her lesson to have to learn.

However, as I said before, if the adult child is not being cared for appropriately and his medical needs are not being met, you could always consider filing an anonymous report with Family Services. Otherwise I'd stay out of it and away from it. It's not your place to rescue these people, especially if the Maffia, or Maffia-like people are involved.

Your own safety comes first.

[holly40]

Great advice Elysium,

As a final note in the matter, this person with the 22q11.2 DS from what I have been told smoked a lot of pot and used other drugs/ alcohol as a kid. The NIH itself says and I quote, "Most researchers do not believe that substance abuse causes schizophrenia." But the psychopath was targeting a family and that family couldn't be linked to pot. So conveniently the psychopath convinced the family of the mentally ill kid her troubles were from cocaine. So the psychopath got her way at the expense of duping another family. So everyone is happy. The psychopath is happy the duped woman can blame something not real on her son's illness. I just find it amazing the level of hatred in the world where people lie to themselves and everyone else to accomplish their twisted and insane objectives, especially this one where the whole issue is based on fake science.

Holly

Originally Posted by Elysium

My sincere advice is, if you have no role in the situation, then stay out of it.

It sounds really messed up and unfortunately you were somehow put in the position of having knowledge of what was happening. It really doesn't sound like this is your battle to fight. Sometimes you just need to let the chips fall where they may and if the duped party ends up getting hurt then that's her lesson to have to learn.

However, as I said before, if the adult child is not being cared for appropriately and his medical needs are not being met, you could always consider filing an anonymous report with Family Services. Otherwise I'd stay out of it and away from it. It's not your place to rescue these people, especially if the Maffia, or Maffia-like people are involved.

Your own safety comes first.