Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 The one nurse made a mistake on the date I just double checked this morning and it's only been about 80 days!! Now I'm terrified it was to early!! Janet mom to Brittany age 18, CVID We were told 100days to get the IG out of the system **************You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Britt just did all the blood work to retest her immune system and it was only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the dates up when she gave me the info by a month! This is a new doctor. Now do you understand? Janet mom to Brittany age 18, CVID In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time, mother5590@... writes: I do not understand? **************You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 I think they took 20 tubes of blood, no kidding! She said she would test the pneumovax after these all come back if needed. This is a new doctor! Janet mom to Brittany age 18, CVID Yes, I know that some go for a bit less and say 90 days but our doctor was clear about the 100 days. What kind of testing did they do? did they do a pneumovax? per and post titers? I think that would be the one that would be skewed mostly. But may people test at 3 weeks and then again at 6 weeks so you could get a better idea if they keep their antibodies. I would consider letting the doctor know and they will probably rerun some tests at a later time to get a more accurate picture if they have concerns. I would think that it has been long enough to see a overall trend even at 80 days. BARBIE ________________________________ From: " _BBsmart2@..._ (mailto:BBsmart2@...) " <_BBsmart2@..._ (mailto:BBsmart2@...) > _@..._ (mailto: ) Sent: Wednesday, February 25, 2009 12:29:48 PM Subject: Re: retest Britt just did all the blood work to retest her immune system and it was only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the dates up when she gave me the info by a month! This is a new doctor. Now do you understand? Janet mom to Brittany age 18, CVID In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time, mother5590 (DOT) com writes: I do not understand? ************ **You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (_http://movies._ (http://movies./) aol.com/oscars- academy-awards? ncid=emlcntusmov i00000001) [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] **************You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Yes, I know that some go for a bit less and say 90 days but our doctor was clear about the 100 days. What kind of testing did they do? did they do a pneumovax? per and post titers? I think that would be the one that would be skewed mostly. But may people test at 3 weeks and then again at 6 weeks so you could get a better idea if they keep their antibodies. I would consider letting the doctor know and they will probably rerun some tests at a later time to get a more accurate picture if they have concerns. I would think that it has been long enough to see a overall trend even at 80 days. BARBIE ________________________________ From: " BBsmart2@... " <BBsmart2@...> Sent: Wednesday, February 25, 2009 12:29:48 PM Subject: Re: retest Britt just did all the blood work to retest her immune system and it was only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the dates up when she gave me the info by a month! This is a new doctor. Now do you understand? Janet mom to Brittany age 18, CVID In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time, mother5590 (DOT) com writes: I do not understand? ************ **You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies. aol.com/oscars- academy-awards? ncid=emlcntusmov i00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 I guess you will have to wait and see but I do think it has been long enough to get a good baseline. We tested Lucas' immune system many times even when he was on IVIg and it still has lots of deficiencies. So I think she will get an overall trend in spite of it being early. I know it must feel a bit scary that they might dismiss her illness if they come back more normal. I would be worried if it were in 30 days but at 80 a good bit would have turned back to her normals. I am sorry. BARBIE ________________________________ From: " BBsmart2@... " <BBsmart2@...> Sent: Wednesday, February 25, 2009 1:15:23 PM Subject: Re: retest I think they took 20 tubes of blood, no kidding! She said she would test the pneumovax after these all come back if needed. This is a new doctor! Janet mom to Brittany age 18, CVID Yes, I know that some go for a bit less and say 90 days but our doctor was clear about the 100 days. What kind of testing did they do? did they do a pneumovax? per and post titers? I think that would be the one that would be skewed mostly. But may people test at 3 weeks and then again at 6 weeks so you could get a better idea if they keep their antibodies. I would consider letting the doctor know and they will probably rerun some tests at a later time to get a more accurate picture if they have concerns. I would think that it has been long enough to see a overall trend even at 80 days. BARBIE ____________ _________ _________ __ From: " _BBsmart2aol (DOT) BBs_ (mailto:BBsmart2aol (DOT) com) " <_BBsmart2aol (DOT) BBs_ (mailto:BBsmart2aol (DOT) com) > _@groups .Ped_ (mailto:groups (DOT) com) Sent: Wednesday, February 25, 2009 12:29:48 PM Subject: Re: retest Britt just did all the blood work to retest her immune system and it was only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the dates up when she gave me the info by a month! This is a new doctor. Now do you understand? Janet mom to Brittany age 18, CVID In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time, mother5590 (DOT) com writes: I do not understand? ************ **You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (_http://movies. _ (http://movies. /) aol.com/oscars- academy-awards? ncid=emlcntusmov i00000001) [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] ************ **You're invited to Hollywood's biggest party: Get s updates, red carpet pics and more at Moviefone. (http://movies. aol.com/oscars- academy-awards? ncid=emlcntusmov i00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Who is suggesting a " retest " ? Is it your insurance company or your " physician? If it is your insurance company, your physician should be fighting it tooth and nail. If you have a " proper diagnosis " you are not going to regrow an immune system, any more that you will regrow an amputated limb. The AAAAI is very specific about stopping IViG therapy. They say it is not in the interest of the patient and is not necessary. If for some very strange reason there was a misdiagnosis, it will show up when you physician gets you IViG level as part of your semi annual blood work. The labs will show an increase in IgG, the IViG does not stop you bodies production of IgG is you make any. If you doctor is suggesting you go off IViG, you might suggest he gets the IDF to arrange a Peer consultion with hm and help him understand IViG and primary immune diseases. If he resists the " suggestion " to talk to an expert, you might consider another physician. The entire concept of a " retest " , is just bad medicine and dangerous for the patient. > > PLEASE,can someone tell me when is the minimon time after you stop IVIG you > have to wait to retest your immune system?? > > Thanks!! > > Janet mom to Brittany age 18, CVID > Quote Link to comment Share on other sites More sharing options...
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