Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hi all. Well, you know I've been crowing about how we're re-doing all testing next month and I'm hoping to have some answers at that time. Now that is over two, the theory is that we'll be able to tell if this is transient (doubtful) or not -- if her levels are as bad as last year, we'll start treatment. Well I just got a note from the immuno nurse saying the immuno ONLY wants to look at the post-pneumococcal antibodies this time (from her FOURTH Prevnar), and we'll meet when those results are back and discuss whether or not to do more tests. WHAT???????????????? No way, babe. I've been waiting A YEAR to look at her general #s again. There's a question about her memory cells, and I want to know if her other vaccine antibodies have dropped off (esp. polio and Hib, which took extra vaccines to work), I want to see if her T-cells are still low, I NEED to see her IgG, IgA, IgM and IgE. I cannot in good conscience start IGIV based on pneumo titers alone. I didn't start it after her third Prevnar tanked, why would I start it after four? And even if her pneumo titers are better this time, I won't trust it. She showed some response on Prevnar #2 but by Prevnar #3 they were all under 200 again. We can't base the decision on health because she's been pretty well since I quit my job to stay home with her and we started isolating her (she got ear tubes too). But the immuno wants us to keep her protected because of the pneumo antibody problem (she already had strep-pneumo meningitis once), but we can't do that forever or she'll be a social misfit. So yes, she's been fairly healthy (five ear infections plus one viral ER visit in one year), but she's NOT leading a normal life, socially. I want to either let her be a normal kid because I safely CAN, or bite the bullet and start treatment so she can be around other people. But I MUST know her other levels before I can decide that. I faxed my concerns and request to the immuno, I should hear back by Monday. I sure hope she agrees to do the other tests -- I'll be FURIOUS if she doesn't. I CANNOT wait until June or July for this info, I'll go crazy. I swear if she doesn't let us do those tests I'll find some doctor who will. It's MY child's immune system and we deserve to know what's going on with it. Right? VENTING!!!!!!!!!! (mom to , age 2, antibody def, IgA, IgM, IgG def?????? - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 , I know how much you have been looking forward to having those tests done, so I can understand how frustrated you must be at hearing that they are not planning to do them! I am hoping that you immuno will listen to your request and decide to go ahead with them. Keep us posted, , and s mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 I've just spent 2 hours this morning playing monopoly with my 9 y.o.m. ocder and two of his friends. This evening I sat and " rewatched " a movie with him for 2 1/2 more hours. Now it's time to go to bed and he wants to watch another movie in his room. With all the paraphanalia attached to the tv the vcr won't play. I try to reconnect everything and still no picture. In comes his daddy who reconnects everything just like I had already done once and of course it plays. I told daddy I had already done it like that once. My son says mom quit being so harsh. You've been harsh to me ever since I started 4th grade. Boy did I get frustrated. How come I'm always the harsh one? I try to help him do the right things and stay out of trouble and I'm being to harsh. It seems like his dad takes his side every time blaming it on ocd and perfectionism. How do I know if this is ocd or just being manipulative. This morning I want to show him what harsh is, I'm still so frustrated. Thanks for the vent. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 No I'm not ashamed, actually I'm very proud that my son is able to get up and go outside and enjoy shooting birds with bb guns and will continue to encourage him to do so. It certainly beats him lying around his bed being depressed or obsessing about something. Have a good evening and we'll shoot more birds tomorrow hopefully. And, I'm being very real!!!!! I also think you should keep your thoughts to yourself about other parents of OC children, I'll certainly not share my thoughts about you over the WWW. > ' outside shooting birds with a bb gun???????????????????????get real!!!!!!!!!!!!!!!!!!!!!!I`d take monopoly any day!(you should be ashamed). Sue in NY buddy12771@l... > > > -- > > --------- Original Message --------- > DATE: Fri, 02 Jan 2004 20:53:09 > From: " momsbusiness1062 " <ontheroad@s...> > To: > Cc: > > Thanks for letting me know I'm not alone in this situation. Maybe > men are too blind to see some things. This afternoon has been better > and in fact J. is outside shooting birds with his B-B gun with a > friend. Then it's off to basketball practice which he will not want > to go because he'll have to stop doing one fun thing to do something > else. It seems like once he gets there he does o.k. It's just > leaving something he's good at and doing something that he's o.k. > with. Maybe the perfectionist side of OCD. Anyway, thanks and have > a good evening. I'll check later. > Mom > > > > Our list archives, bookmarks, files, and chat feature may be accessed at: http://groups.yahoo.com/group// . > Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D., Aureen Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail Pesses, Kathy , Vivian Stembridge, and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at louisharkins@y... , louisharkins@h... , louisharkins@b... . > > > > > Quote Link to comment Share on other sites More sharing options...
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