Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Hi Fran and all! Just got back from out regular 6 month check up at NIH. We saw Captain Coburn and Dr. Kastner. It was a really good visit as usual. We continue as we have been but since PJ's episodes have been pretty erratic past few months, episodes at least every month, sometimes every 2 weeks, Captain Coburn wanted to go ahead and add Enbrel injections. Dr. Kastner decided that since historically, PJ's episodes tend to subside during the summer months, he wants to see him back in about 6 weeks and if the episodes continue as they have been, we will start Enbrel along with Colchicine and if they subside, then we will not. I'm going to hold my breath for 6 weeks! Meanwhile we have to go ahead and get the tb tine test in case we do start Enbrel. Is there anyone here who has an FMF child on Enbrel? Does it really help? You know something that I think is so cool about our NIH visits? Because we always drive in, we have to go through the half hour security procedures at the gate, dad and I have to get out of the car and stand with arms outstreched while security waves the wands around us, we hand over our drivers licenses to be entered into their system, the car is thoroughly inspected, visually and with the wands. The one thing that they never do, in the 4 years that we have been going there, is that they NEVER mess with the child in the car! He doesn't have to show ID, he does not have to get out of the car, he doesn't have to say a word. They never disturb the little ones. I just amazes me that this huge institution , with it's very formal and secure procedures, has thought to build into its procedures that small thing. They don't mess with the kids that are there to be helped! Pat, mom to PJ, FMF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Pat Thanks for the update!! Please let us know how PJ does during the next few weeks. It took us about 15 minutes to get through the gate... and they only checked me! ph begged them to wand him so of course they did! I can tell you though, if you go out the other gate to get on the metro by foot... They did search ph on the way back!! He loved it though! Just home from soccer.... ph is in the tub.... talk later. Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
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