Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ________________________________ From: " BBsmart2@... " <BBsmart2@...> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 I am wondering if the reason is that some doctors believe it is for kids that have a life threatening illness. Lucas has been on Gammaglobulin since he was 3 and doing mostly well. I do not know why they would turn him down with all of your kids having the same diagnosis. I just know how much it would mean to him and would love to get it for him. I am not sure what his wish would be. BARBIE ________________________________ From: " BBsmart2@... " <BBsmart2@...> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Honestly, I am not sure if Nick qualified because of his CVID or because he was septic before the CVID was dx when he was 8 months old. When we filled out the app it was during a rough time this last summer when Nick was off milk, soy and gluten and he really thought life was horrible.. he couldn't eat anything and I remember putting on there that it would be nice for him to be totally in control of something for once in his life. We also had a similar conversation with his immunologist, so maybe that helped. Amy Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ________________________________ From: [mailto: ] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ________________________________ From: " BBsmart2@... <mailto:BBsmart2%40aol.com> " <BBsmart2@... <mailto:BBsmart2%40aol.com> > <mailto:%40> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I know they did say just having CVID as a diagnosis doesn't automatically make you eligible. It's up to the doctor. Janet mom to Brittany age 18, CVID I do not know why they would turn him down with all of your kids having the same diagnosis. **************Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol.com/?ncid=emlcntaolcom00000024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thank you! By NO means do I feel we are due or entitled to a WISH . But I just do not understand the reasons he has been denied. I believe one of the problems is that they required the Pediatrician to make the decision here. She has only seen us 2x in the past 3 years which means that she has NO Idea what we have been through. We see the immunologist more often but he has been pretty well over this time period due to the gammaglobulin. Also I think when I requested it before CVID was not considered one of the allowable 10 years ago. I do not know I guess I am trying to figure out how to help him right now and maybe this is just not meant to be. BARBIE ________________________________ From: Ladden <LLadden@...> Sent: Monday, January 5, 2009 6:43:28 AM Subject: RE: Re: Make a wish I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ____________ _________ _________ __ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ____________ _________ _________ __ From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> > groups (DOT) com <mailto:% 40groups. com> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thank you! By NO means do I feel we are due or entitled to a WISH . But I just do not understand the reasons he has been denied. I believe one of the problems is that they required the Pediatrician to make the decision here. She has only seen us 2x in the past 3 years which means that she has NO Idea what we have been through. We see the immunologist more often but he has been pretty well over this time period due to the gammaglobulin. Also I think when I requested it before CVID was not considered one of the allowable 10 years ago. I do not know I guess I am trying to figure out how to help him right now and maybe this is just not meant to be. BARBIE ________________________________ From: Ladden <LLadden@...> Sent: Monday, January 5, 2009 6:43:28 AM Subject: RE: Re: Make a wish I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ____________ _________ _________ __ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ____________ _________ _________ __ From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> > groups (DOT) com <mailto:% 40groups. com> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thanks , I am not sure whether they are only available in Ohio. All the chapters are in Ohio or in Nevada. But their criteria does seem to be different. They just go to the doctor to verify the diagnosis only and they make their own decisions. With MAW it is up to the Doctor to make the decision whether the child qualifies and/or would be a good medical match for the program. I can see as I wrote a few minutes ago that maybe they would not choose him since his doctor has never seen him very ill. We has only been to see her for 2 years and only a couple of times. He has been quite well with Sub Q as many of our kids have after they have been on it for awhile. But he has been through so much in his life. I believe my being a nurse has kept him out of the hospital because I have waited and worried and hoped and prayed many times and we have gotten through things. BARBIE ________________________________ From: Ladden <LLadden@...> Sent: Monday, January 5, 2009 6:43:28 AM Subject: RE: Re: Make a wish I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ____________ _________ _________ __ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ____________ _________ _________ __ From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> > groups (DOT) com <mailto:% 40groups. com> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 We are in Connecticut, Special Wishes, with a chapter in each state----they are available nationally-our nursing agency nominated him and I had the info sent to immunologist to complete, as their nurse said they complete these all the time and know how to get them approved. I did not use our pediatrician to complete it. ________________________________ From: [mailto: ] On Behalf Of Barbara Jimenez Sent: Monday, January 05, 2009 11:15 PM Subject: Re: Re: Make a wish Thanks , I am not sure whether they are only available in Ohio. All the chapters are in Ohio or in Nevada. But their criteria does seem to be different. They just go to the doctor to verify the diagnosis only and they make their own decisions. With MAW it is up to the Doctor to make the decision whether the child qualifies and/or would be a good medical match for the program. I can see as I wrote a few minutes ago that maybe they would not choose him since his doctor has never seen him very ill. We has only been to see her for 2 years and only a couple of times. He has been quite well with Sub Q as many of our kids have after they have been on it for awhile. But he has been through so much in his life. I believe my being a nurse has kept him out of the hospital because I have waited and worried and hoped and prayed many times and we have gotten through things. BARBIE ________________________________ From: Ladden <LLadden@... <mailto:LLadden%40connexintl.com> > <mailto:%40> Sent: Monday, January 5, 2009 6:43:28 AM Subject: RE: Re: Make a wish I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ____________ _________ _________ __ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ____________ _________ _________ __ From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> > groups (DOT) com <mailto:% 40groups. com> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 --- Barbie, It cant hurt to try again. You wouldnt even need to tell him....just do it over the computer, then if they accept him, you can tell him then. He DOES need something to look forward to.....there isnt anything wrong with asking. I felt a little strange about it, too.....I just wasnt brought up that way, to ask for things....and I felt really weird when we applied for our second wish, with our son. But MAW has told me repeatedly that they are very well funded, that just bc my kids are siblings that doesnt lessen the affects of having chronic illnesses,etc. In essence, that is what they are there for. If it were me, and I know you need to make your own decisions, but were it me, I would apply to every wish organization you can find, and roll with whatever one accepts him first:) When Savannah was going thru that awful yr, that is when we applied for MAW. I sent a letter outlining her anxiety struggles and depression, as it was linked to her CVID. I wrote that a wish would give her soemthing to look forward to, that her anxiety was so great she was having all these problems. They called me back and told me that due to her extreme anxiety, they considered her case a " rush wish " , and did everything immediately. Having CVID sucks. Lucas has added problems on top of his CVID, which sucks even more. If he can get one thing....this one trip/wish bc he has it, take it if you can. Its one positive that could come of dealing with 13 yrs of struggles. He DOES deserve it. Do what I did.....apply, and go beyond that, tell them about his mental struggles and how hard he's had it lately. I was thinking of Lucas last night and praying for him. A thought came to me that maybe he feels like he's failed/useless bc everything is so hard for him. I wonder if he would like having a special purpose, like mentoring another child, say, in reading, or at a homeschool group....something that makes him feel like he is important(of course, he IS important, but he may not feel that way). Something he could be really good at. A couple other ideas I had thought of were....is his violence more recent, or has it stayed the same? has he had a growth spurt, maybe his meds need to be increased? do you think he is struggling with jealousy bc of the new baby and all the attention your daughter has gotten over the last yr or so? valarie mom to 3 w/cvid In , Barbara Jimenez <mother5590@...> wrote: > > Thank you! By NO means do I feel we are due or entitled to a WISH . But I just do not understand the reasons he has been denied. I be eve one of the problems is that they required the Pediatrician to make the decision here. She has only seen us 2x in the past 3 years which means that she has NO Idea what we have been through. We see the immunologist more often but he has been pretty well over this time period due to the gammaglobulin. Also I think when I requested it before CVID was not considered one of the allowable 10 years ago. I do not know I guess I am trying to figure out how to help him right now and maybe this is just not meant to be. > > BARBIE > > > > > ________________________________ > From: Ladden <LLadden@...> > > Sent: Monday, January 5, 2009 6:43:28 AM > Subject: RE: Re: Make a wish > > > I would try Special Wishes- had his DisneyWorld wish granted by > Special Wishes-They have less requests for wishes than MAW and are a bit > more lenient with wish granting.... > > - in CT mom to 7 years old > > ____________ _________ _________ __ > > From: groups (DOT) com [mailto:groups (DOT) com] On Behalf > Of Barbara Jimenez > Sent: Sunday, January 04, 2009 7:23 PM > groups (DOT) com > Subject: Re: Re: Make a wish > > Thanks I have done that 2x over the past 10 years and was turned down 2x > > BARBIE > > ____________ _________ _________ __ > From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com > <mailto:BBsmart2% 40aol.com> > > groups (DOT) com <mailto:% 40groups. com> > Sent: Sunday, January 4, 2009 4:56:48 PM > Subject: Re: Re: Make a wish > > You can fill out the form online, someone will call ask you a few > questions > and then they will contact your doctor. It's not embarrassing at all. > > Janet mom to Brittany age 18, CVID > > It is embarrassing to call them and do an intake and then be turned down > > because I think he qualifies based on what I know. > > ************ **Stay up-to-date on the latest news - from fashion trends > to > celebrity break-ups and everything in between. > (http://www.aol. com/?ncid= emlcntaolcom0000 0024) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Valarie. you are so sweet. Actually Lucas has had these kinds of issues since infancy. He is Early Onset Bipolar Disorder which came from his birth family. It is basically the brain chemistry going crazy and cause extremes of emotions. So when he feel anger it is rage and sadness is depression etc. So what is important is for us to continue to help him learn to modulate his emotions. He is doing somewhat better now. I have been fighting for him since he was born and we have been in counseling. It is amazing how much BAD counseling is out there but anyway he is a sweet precious soul that I will not give up on. As far as the wish, I am going in again to the immunologist and am going to ask her to talk to the Pediatrician. She is friends with her. They will not allow the immunologist to make the decision. I know she would support it if she knew. As far as the jealousy etc, we did address that just after the baby was born but he loves the baby now. My kids have both been sick through their lives and have competed horribly. ( my daughter was 6 when he was born and she went from being the princess( she has numerous congenital anomalies from her birth mom) to having consistent competition with a very sick little guy. We had no family support so it was tough.Thanks so much for you kindness I will think about what to do. BARBIE ________________________________ From: osdbmom <osdbmom@...> Sent: Tuesday, January 6, 2009 8:54:47 AM Subject: Re: Make a wish --- Barbie, It cant hurt to try again. You wouldnt even need to tell him....just do it over the computer, then if they accept him, you can tell him then. He DOES need something to look forward to.....there isnt anything wrong with asking. I felt a little strange about it, too.....I just wasnt brought up that way, to ask for things....and I felt really weird when we applied for our second wish, with our son. But MAW has told me repeatedly that they are very well funded, that just bc my kids are siblings that doesnt lessen the affects of having chronic illnesses,etc. In essence, that is what they are there for. If it were me, and I know you need to make your own decisions, but were it me, I would apply to every wish organization you can find, and roll with whatever one accepts him first:) When Savannah was going thru that awful yr, that is when we applied for MAW. I sent a letter outlining her anxiety struggles and depression, as it was linked to her CVID. I wrote that a wish would give her soemthing to look forward to, that her anxiety was so great she was having all these problems. They called me back and told me that due to her extreme anxiety, they considered her case a " rush wish " , and did everything immediately. Having CVID sucks. Lucas has added problems on top of his CVID, which sucks even more. If he can get one thing....this one trip/wish bc he has it, take it if you can. Its one positive that could come of dealing with 13 yrs of struggles. He DOES deserve it. Do what I did.....apply, and go beyond that, tell them about his mental struggles and how hard he's had it lately. I was thinking of Lucas last night and praying for him. A thought came to me that maybe he feels like he's failed/useless bc everything is so hard for him. I wonder if he would like having a special purpose, like mentoring another child, say, in reading, or at a homeschool group....something that makes him feel like he is important(of course, he IS important, but he may not feel that way). Something he could be really good at. A couple other ideas I had thought of were....is his violence more recent, or has it stayed the same? has he had a growth spurt, maybe his meds need to be increased? do you think he is struggling with jealousy bc of the new baby and all the attention your daughter has gotten over the last yr or so? valarie mom to 3 w/cvid In groups (DOT) com, Barbara Jimenez <mother5590@ ...> wrote: > > Thank you! By NO means do I feel we are due or entitled to a WISH . But I just do not understand the reasons he has been denied. I be eve one of the problems is that they required the Pediatrician to make the decision here. She has only seen us 2x in the past 3 years which means that she has NO Idea what we have been through. We see the immunologist more often but he has been pretty well over this time period due to the gammaglobulin. Also I think when I requested it before CVID was not considered one of the allowable 10 years ago. I do not know I guess I am trying to figure out how to help him right now and maybe this is just not meant to be. > > BARBIE > > > > > ____________ _________ _________ __ > From: Ladden <LLadden@... > > groups (DOT) com > Sent: Monday, January 5, 2009 6:43:28 AM > Subject: RE: Re: Make a wish > > > I would try Special Wishes- had his DisneyWorld wish granted by > Special Wishes-They have less requests for wishes than MAW and are a bit > more lenient with wish granting.... > > - in CT mom to 7 years old > > ____________ _________ _________ __ > > From: groups (DOT) com [mailto:] On Behalf > Of Barbara Jimenez > Sent: Sunday, January 04, 2009 7:23 PM > groups (DOT) com > Subject: Re: Re: Make a wish > > Thanks I have done that 2x over the past 10 years and was turned down 2x > > BARBIE > > ____________ _________ _________ __ > From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com > <mailto:BBsmart2% 40aol.com> > > groups (DOT) com <mailto:% 40groups. com> > Sent: Sunday, January 4, 2009 4:56:48 PM > Subject: Re: Re: Make a wish > > You can fill out the form online, someone will call ask you a few > questions > and then they will contact your doctor. It's not embarrassing at all. > > Janet mom to Brittany age 18, CVID > > It is embarrassing to call them and do an intake and then be turned down > > because I think he qualifies based on what I know. > > ************ **Stay up-to-date on the latest news - from fashion trends > to > celebrity break-ups and everything in between. > (http://www.aol. com/?ncid= emlcntaolcom0000 0024) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Make a wish here would not let me use the Immunologist but I am going to try again. I really think it would make a difference. Thanks BARBIE ________________________________ From: Ladden <LLadden@...> Sent: Tuesday, January 6, 2009 7:35:35 AM Subject: RE: Re: Make a wish We are in Connecticut, Special Wishes, with a chapter in each state----they are available nationally-our nursing agency nominated him and I had the info sent to immunologist to complete, as their nurse said they complete these all the time and know how to get them approved. I did not use our pediatrician to complete it. ____________ _________ _________ __ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Monday, January 05, 2009 11:15 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks , I am not sure whether they are only available in Ohio. All the chapters are in Ohio or in Nevada. But their criteria does seem to be different. They just go to the doctor to verify the diagnosis only and they make their own decisions. With MAW it is up to the Doctor to make the decision whether the child qualifies and/or would be a good medical match for the program. I can see as I wrote a few minutes ago that maybe they would not choose him since his doctor has never seen him very ill. We has only been to see her for 2 years and only a couple of times. He has been quite well with Sub Q as many of our kids have after they have been on it for awhile. But he has been through so much in his life. I believe my being a nurse has kept him out of the hospital because I have waited and worried and hoped and prayed many times and we have gotten through things. BARBIE ____________ _________ _________ __ From: Ladden <LLaddenconnexintl (DOT) com <mailto:LLadden% 40connexintl. com> > groups (DOT) com <mailto:% 40groups. com> Sent: Monday, January 5, 2009 6:43:28 AM Subject: RE: Re: Make a wish I would try Special Wishes- had his DisneyWorld wish granted by Special Wishes-They have less requests for wishes than MAW and are a bit more lenient with wish granting.... - in CT mom to 7 years old ____________ _________ _________ __ From: groups (DOT) com [mailto:] On Behalf Of Barbara Jimenez Sent: Sunday, January 04, 2009 7:23 PM groups (DOT) com Subject: Re: Re: Make a wish Thanks I have done that 2x over the past 10 years and was turned down 2x BARBIE ____________ _________ _________ __ From: " BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> " <BBsmart2aol (DOT) com <mailto:BBsmart2% 40aol.com> > groups (DOT) com <mailto:% 40groups. com> Sent: Sunday, January 4, 2009 4:56:48 PM Subject: Re: Re: Make a wish You can fill out the form online, someone will call ask you a few questions and then they will contact your doctor. It's not embarrassing at all. Janet mom to Brittany age 18, CVID It is embarrassing to call them and do an intake and then be turned down because I think he qualifies based on what I know. ************ **Stay up-to-date on the latest news - from fashion trends to celebrity break-ups and everything in between. (http://www.aol. com/?ncid= emlcntaolcom0000 0024) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 They contacted Brittany's Immunologist. He filled out the paper. Janet mom to Brittany age 18, CVID In a message dated 1/6/2009 10:15:39 A.M. Eastern Standard Time, mother5590@... writes: I am going in again to the immunologist and am going to ask her to talk to the Pediatrician. She is friends with her. They will not allow the immunologist to make the decision. I know she would support it if she knew. **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215195222x1200993641/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=82%26bcd=De cemailfooterNO82) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Thanks I will ask them why because I tried and they refused here in Tulsa. BARBIE ________________________________ From: " BBsmart2@... " <BBsmart2@...> Sent: Wednesday, January 7, 2009 10:13:51 AM Subject: Re: Re: Make a wish They contacted Brittany's Immunologist. He filled out the paper. Janet mom to Brittany age 18, CVID In a message dated 1/6/2009 10:15:39 A.M. Eastern Standard Time, mother5590 (DOT) com writes: I am going in again to the immunologist and am going to ask her to talk to the Pediatrician. She is friends with her. They will not allow the immunologist to make the decision. I know she would support it if she knew. ************ **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola. com/promoclk/ 100000075x121519 5222x1200993641/ aol?redir= http://www. freecreditreport .com/pm/default. aspx?sc=668072% 26hmpgID= 82%26bcd= De cemailfooterNO82) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 Hi, I'm new here and probably shouldn't be asking this question, but is the consensus here that PIDD's are a serious chronic disease or are they a life-threatening medical condition? A little about me, I was diagnosed with CVID in the early 80's and was a subject in the original FDA studies for IViG. I have two teenagers with CVID, one is a college sophomore at a community college where he is president of Student government. The other a high school senior who has chosen to deferring her acceptance at an Ivy League school to spend a year as a volunteer in the City Year program, tutoring elementary school kinds in intercity Boston school. Both infuse Gamunex every 4 weeks. We live in the Cleveland Ohio area. My son is on the IDF teen and youth panel for and I am an IDF peer volunteer. My daughter wants nothing to do with the IDF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 With Macey's diagnosis it's alternated between the two. Les's diagnosis is more chronic. I've never heard of a teen and youth panel. When was that made? Ursula Holleman mom to (16) and Macey (13) www.caringbridge.org/visit/maceyholleman @...: clevelandfather@...: Thu, 29 Jan 2009 01:00:09 +0000Subject: Re: Make a wish Hi, I'm new here and probably shouldn't be asking this question, butis the consensus here that PIDD's are a serious chronic disease or arethey a life-threatening medical condition? A little about me, I was diagnosed with CVID in the early 80's and wasa subject in the original FDA studies for IViG. I have two teenagerswith CVID, one is a college sophomore at a community college where heis president of Student government. The other a high school senior whohas chosen to deferring her acceptance at an Ivy League school tospend a year as a volunteer in the City Year program, tutoringelementary school kinds in intercity Boston school. Both infuseGamunex every 4 weeks. We live in the Cleveland Ohio area. My son is on the IDF teen and youth panel for and I am an IDF peervolunteer. My daughter wants nothing to do with the IDF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 neither have I BARBIE ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, January 28, 2009 7:33:28 PM Subject: RE: Re: Make a wish With Macey's diagnosis it's alternated between the two. Les's diagnosis is more chronic. I've never heard of a teen and youth panel. When was that made? Ursula Holleman mom to (16) and Macey (13) www.caringbridge. org/visit/ maceyholleman groups (DOT) comFrom: clevelandfather@ earthlink. netDate: Thu, 29 Jan 2009 01:00:09 +0000Subject: Re: Make a wish Hi, I'm new here and probably shouldn't be asking this question, butis the consensus here that PIDD's are a serious chronic disease or arethey a life-threatening medical condition? A little about me, I was diagnosed with CVID in the early 80's and wasa subject in the original FDA studies for IViG. I have two teenagerswith CVID, one is a college sophomore at a community college where heis president of Student government. The other a high school senior whohas chosen to deferring her acceptance at an Ivy League school tospend a year as a volunteer in the City Year program, tutoringelementary school kinds in intercity Boston school. Both infuseGamunex every 4 weeks. We live in the Cleveland Ohio area. My son is on the IDF teen and youth panel for and I am an IDF peervolunteer. My daughter wants nothing to do with the IDF. Quote Link to comment Share on other sites More sharing options...
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