Update: We finally got the bloodwork done on my son, but it was a long hard road that has left us exhausted and fearful.
We had tried Xanax in the spring but to no avail, but on the advice of a dr who's a friend, we tried again at higher doses. Finally, we found a dose that made him kind of loopy and took away some of the anxiety. We arranged for our dr friend to do the blood draw at home, got a script for lidocaine cream, had our dr friend come talk to him (which he tolerated but did not participate in), and generally prepared him as well as we could. The morning came - and he refused everything - would not take the xanax, refused the cream, and refused to do the bloodwork. He said he didn't care anymore and would rather live like this than try to get through treatment.
We spoke to our dr here and Dr. Schulman and both said time for psychiatric hospitalization. That the idea would be to drug him into submission (not really mincing words here, that's almost verbatim.). It sounds awful, but honestly, I was pretty close to agreeing, I could see no other way.
Luckily, a couple of hours later, he decided on his own to take the Xanax, and then under the influence my husband was able to talk him into the bloodwork. At this point we had to go to the lab because our friend was now at work, but he went. The nurse had to come out to the car to do it, though, as he couldn't get himself in the building.
So the good news is that after more than a month of trying, the blood work is done, but I feel no relief. It's only blood work, and he couldn't even get in the building even when drugged up on Xanax. How can we possibly get him in for a tonsillectomy or IVIG????
I suspect we are only postponing the inevitable, and that when we try to pursue the next step in treatment we will be back to facing hospitalization in order to get it done. For my son, that would mean EMTs coming to the house and forcibly removing him via ambulance. I can't even think about it, but also know we can't go on like this.
FYI for those who recommended other meds, we also tried clonidine to no avail. Benadryl helps a tiny bit but not enough to make a difference. But thank you for sharing your recommendations and stories as you never know.
4nikki, we can't get the cunningham panel done in NY, and I can't get him to a doctor out of the state to have it done.
How do you all cope with this? I am feeling so frustrated, discouraged and doubtful. It's been almost a year with no progress and I am worn out and losing hope. Dr. Schulman feels the tonsillectomy and IVIG would help him, but it seems so unattainable. I can't bear watching him in this much pain.
Thanks for all your input and advice.