I have signed up my 2 NC CAH kids to be in the NIH Natural History study. We are scheduled to leave this Sunday afternoon, to do the study Mon-Wed. Everything is set, including our stay at the Children's Inn. I told my ex that I was planning to do this in July (?), and at that time he nixed it. Historically I manage my kid's health, I pick up scripts, I take them to endo, I take them for bloodwork, I take them to x-rays, I take them to the pulminologist for their asthma check-ups. My ex has been involved where he administers needed meds. He has taken them to docs a few times. Only a few. I attend CARES conferences. And I am always all over this board. Like everyone else, I am doing everything I can to learn.
So I put my kids in this study, because to me it is a no-brainer. We are not putting the kids on any experimental drugs, I have access to top CAH docs to pick their brains. My kids (ages 12 and 8) can start taking more ownership of CAH. Yadda. yadda, yadda. Now my ex contacts me yesterday saying he does not give permission for my kids to be guinea pigs. He does not want them stuck with any needles. He wants them to lead as normal of a life as possible. He does not want them to feel any different. He doesn't want their routine to change. HE doesn't want them to have a lifelong memory of this trip. He doesn't want their school disrupted (I notified the schools in August, and am having work sent along with the kids to do with the teachers on site). He also says he doesn't care about society in general, he does not see any immediate benefit for his children at all. Let other people do it. His children do not have to do this. And it would be one thing if they chose to do this, but they didn't and I did. He said that he had already called the hospital to advise them that he does not give his permission for the kids to be in the study.
In the beginning I advised him of what I was doing and why I was doing it. My son is on GH and Lupron. My daughter is 8 and is already showing signs of precocious puberty. We go to one of the top docs in CAH, but I want to speak to other docs about them. Who knows what I can learn?
My gut feeling is that I have to leave my non-CAH child with him for the time that I am gone which impacts his ability to travel for work and disrupts his routine (only a gut feeling).
I don't know what to do. Today is Friday. We are supposed to leave Sunday. I realize the amount of coordination and work it takes for NIH to schedule everything. I can't believe he is pulling the plug. I need some word-tracks to convince him that this is a good thing for the kids. We need to meet and talk to as many docs as possible. What if all the NIH testing uncovers something that we didn't know before? And what if there is some way I can better treat my kids?
I am mortified that I may very well have to cancel at the last minute.
We are going later this AM to our quarterly endo appointment. I am going to ask him to speak to my ex. Can anyone help me to convince him why we should go? How will this study benefit my kids?
