Have tricky situation..experts needed!!

[Sunshine1]

why the hell didn't you tell me that in the first place??!!!  Instead of have a bitch match with you, I would of rather spoken to you about his chromosomal deletion.

The scientists want both parents because we do not know if it was denovo or if he is a carrier.  I have been cleared.  So know it comes down to does dad have a translocation or did this happen spontaneously?

BTW, I tried to take the high road here and I sent a very nice letter requesting him to come in and take the test again and I resent the original letter stating what this was for.

Guess who I got a call from today?  His WIFE informed me that he would not be taking the test because he works 24 hours and if I was willing to pay him 450.00 for missed work that he would submit to the test....and that he doesn't even see him so what's the point.

If ever I had pent up anger...its today.

[mistoffolees]

>why the hell didn't you tell me that in the first place??!!!
>Instead of have a bitch match with you, I would of rather
>spoken to you about his chromosomal deletion.

Because you didn't mention that it was a chromosomal abnormality until today.

It might help for you to understand my bias. My ex is constantly trying to drag me into her problems and control every element of her life. I would do anything to benefit my daughter, but when she is constantly asking me to do things for her own purposes which are of absolutely no benefit to our daughter, I resist.

The same thing appears to be the case here. Perhaps the research group did not explain what they're trying to do well enough or perhaps there really is some science I'm not aware of, but to me it appears that you're trying to control your ex by making him give blood (either by pestering him until he gives in, laying a guilt trip on him, or suing him in court - even though you admit you won't win) - EVEN THOUGH THERE'S  NO APPARENT BENEFIT TO THE CHILD.

If there is a benefit to the child that I've missed, YOU ARE NOT THE ONE TO PRESENT IT TO THE FATHER. See below.

>
>The scientists want both parents because we do not know if it
>was denovo or if he is a carrier.  I have been cleared.  So
>know it comes down to does dad have a translocation or did
>this happen spontaneously?

Which will not have any impact on his treatment, AFAIK. What MIGHT determine your son's treatment is mapping of HIS DNA. Mapping the father's DNA might be a nice scientific exercise, but won't benefit your son (or, in theory, there's a remote possibility that they might learn something, but it's extremely unlikely - completely unprecedented, AFAIK).

>
>BTW, I tried to take the high road here and I sent a very nice
>letter requesting him to come in and take the test again and I
>resent the original letter stating what this was for.
>
>Guess who I got a call from today?  His WIFE informed me that
>he would not be taking the test because he works 24 hours and
>if I was willing to pay him 450.00 for missed work that he
>would submit to the test....and that he doesn't even see him
>so what's the point.

I already suggested that you get a third party involved. It's obvious that you don't get along with him or his wife and you're asking a big favor from him. You've already learned that he's not going to do it on your request (very possibly just to irritate you). You can choose to continue pounding your head against the wall or try getting a neutral third party involved as I suggested.

[Sunshine1]

I have not indicated all the information on this board, due to relevance to my questions..and most people not understanding genetics...but it does specifically state that both parents are needed...  and since testing our son, the genetics lab has stated that both parents are needed for testing.

I'm not doing this to pester him, I would rather never speak to him as long as I live after what he has done to his kids.  I don't unless I absolutely have to and even then I don't get to. The last time I was on speaker phone was last November.  I am asking him because two different genetics labs requested it that's all.

Are you versed in any types or do you specialize in any specific
chromosome analysis?  We are dealing with a micro-deletion of the 4th.

If you know which syndrome this is...please do not post it in this forum for identity purposes, please PM me.  Thanks.

[mistoffolees]

I know enough about it to know that you're not getting the whole story - or the whole story isn't being presented here.

Ask the clinician exactly why they need the father's DNA. In particular, how is the father's DNA going to change the treatment process for the son. Don't settle for vague answers. Unless the answer is very specific "if the father has guanidine-adenosine at base pair 128, then we'll be administering 10 mg of acetylcholine per kg of body weight, but if he has cytosine-tyrosine, then acetylcholine will not be useful", then there might be a case for testing the father. But I've never heard of that type of consideration EVER in treatment of any disease.

Far more likely would be "if the SON has guanidine-adenosine....". but you don't need the father for that.

I think you'll find that you get a wishy-washy answer like "we don't know enough about it to be able to treat it, but if we do enough studies, then eventually we might have a treatment". I would be very surprised if they can give you a detailed explantion of how the treatment will vary based on the father's chromosomes.

In reality, it's the son's chromosomes that will determine treatment. Put it this way: Half of the father's chromosomes are in the son and half are not.

The half that are NOT in the son are completely irrelevant to the son's treatment. The half that ARE in the son can be determined by testing the son. Even more importantly, the behavior of the father's DNA which is in the son will be affected by YOUR DNA, so the behavior of the father's DNA is irrelevant.

[Sunshine1]

May I send you what they sent me?  Or better yet the study we would like to participate in?  This might be better than me trying to explain it covertly as to not give away our identity.  It will probably all make sense to you if I can show you what it is and what they want.

[Sunshine1]

about 10 years ago he HAD submitted to a test for this but they couldn't tell us anything back then.  Is there a possibility they could use those results or they would have that sample on hand frozen in a lab somewhere?  I am grasping at straws here.

and another thing I can't wait to share... I believe everything happens for a reason, and with every bad situation comes something good...

I just found out today, about an hour ago actually, that my neighbor got a new job about a month and a half ago.  It never occured to me to ask where, I knew it was doing what she did before, but place of business, I never thought to ask.  I babysit for her and our kids run together quite a bit and are at my house almost everyday.  Our husbands play softball together as well.  Well we were chit chatting away and she mentioned where she worked and I lit right up.  Just so happens she works with my ex!!  Not only does she work with him... SHE IS HIS BOSS!!!!!!!!!

BUAHAHWHWHAHHAHAHAHAHAH!!   Karma is a bitch ain't it???

I thought maybe Notnew would like that one!!  :)

(relax misto, i will only use my powers for good, not evil)  ha ha!

[mistoffolees]

Sure. I'd be happy to look at it. I will send you a pm with my email.

[MixedBag]

what was your suggested solution? or approach?

[mistoffolees]

>what was your suggested solution? or approach?
>
>


First, the OP offered to send me the medical documents so I could see what's going on. I sent a PM with my email, but haven't heard back, so I'm not sure about the medical issues, but from what I've read here, it doesn't sound to me like the father's blood sample could possibly have any impact on the child's treatment.

It appears (again, I'm partly speculating since I don't have the docs) that the researchers want the father's DNA for a pure research study - to learn more about the disease in the HOPE that it might someday lead to a treatment, but it sounds like a very long shot.

As for the specific situation, I expressed my personal belief that they would not be able to get a court to order the father to come in for blood testing. My thoughts are that since there's no reason to believe that the father's DNA sample would have any impact on the child's current treatment process, then there's no medical emergency which would require the father to get tested. I further expressed the opinion that I'm not sure that they'd order the father to submit to blood tests even if there WAS a reason to believe that it would help to direct the treatment. My analogy was that if your sister had kidney failure, I do not believe the court would order you to give her a kidney -even if it would save her life.

Having said that, I do believe the father is being unreasonable, but there's usually a reason for that. It appears that (for whatever reason), he and his new wife can't stand the OP and he may be refusing to give the blood out of spite. Therefore, my suggestion was for the OP to stop asking (since he's going to refuse) and try a different approach - possibly asking a family friend, pastor, counselor, etc to talk with him to discuss how it might benefit the child and/or future children with the same disease at the expense of only a minor inconvenience to the father.

[MixedBag]

n/m