Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 PedPID email list Date: Tuesday, June 15, 1999 10:38 AM You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Welcome , we have several families with IgA deficient children. One family has two girls who are IgA deficient. Feel free to jump in with any questions. PedPID email list Date: Friday, 25 June 1999 10:19 You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 1999 Report Share Posted June 29, 1999 Welcome Becky. Feel free to jump right in and ask any questions you might have. Everyone is pretty laid back here and we're always open for new discussions. Re: PedPID email list Hi, I was interested in the email list because my 21 month old son has CVID and I was having a hard time finding info on it. When I found your site, I learned more in five minutes than I have in the previous three months. Thanks, Becky Meadows PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 HI , I too am from Michigan. I am a little familiar with Saline. Who is your daughter's immunologist? Autumn mom to Mark Cd5-Cd19 PID/ GERD, Samter's syndrome, A1A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 She does not have an immunologist but her case is being handled by Dr. Randy Brown, a pulmonologist at University of Michigan Medical Center. Dr. Brown is consulting with the pediatric immunologists at UofM. We initially were referred to Dr. Brown after a serious case of RSV when was 4 weeks old. She kept on not improving - wheezing etc. Come to find out 2-3 months later via a bronchoscopy that she had a bacterial infection in her lungs. At the same time they did the immune work-up and found a IGA deficiency and then that improved but now she has a IGG deficiency. Also, she has reflux which her pediatrician didn't think she had because she did not present with clinical symptoms (no weight loss or vomiting) But she had a 24 hour Ph probe done just before the bronchoscopy and it was definitive that she had reflux. Therefore, her pulmonologist believes the reflux (still has it at 19 months) is causing presistant wheezing - she wheezes every day. Her wheezing is controled by Atrovent, a bronchodialator medication. I wonder why there seems to be a correlation between reflux and immune deficiency? >>> 07/05 7:56 PM >>> From: Autti@... HI , I too am from Michigan. I am a little familiar with Saline. Who is your daughter's immunologist? Autumn mom to Mark Cd5-Cd19 PID/ GERD, Samter's syndrome, A1A --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 a, welcome to the group. There are a couple of children on the list with g-tubes, I believe one child who is post-trach and several who have been on a vent before. Also many with chronic lung problems. You're more than welcome to jump in with both feet and ask any questions. Also looking at the list archives and member introductions might help get a feel for things. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Re: PedPID email list To the PedPID moderator: Hello. My name is a. I have an 8yo. daughter with Down Syndrome, a trach, G-tube, chronic lung disease, history of ventilator dependency, and multiple other medical problems. She has primary immunodeficiency, and receives monthly IVIG. I am interested in learning more about how other people cope with the stress of monthly hospitilizations, side effects, worries over shortages of IVIG, etc. I have been told that my daughter will probably have to receive monthly infusions for the rest of her life. I am trying to find ways to help her and myself to cope better, with less anxiety. I believe that knowledge is power, and sharing information makes coping easier. Sincerely, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Dear (Fischer) We have been and occasionally still go to U of M's pulmonary division. We see Dr. G.G. . She treats my cousin who has CF and follows my kids for their lung disease associated with their other medical problems. As far as immunology goes, they have an excellent physician by the name of Dr. Marc Mc. We have seen him as well. Due to the unusual things associated with Mark's PID, we opted to travel to Cleveland for immunology as they came so highly recommended. As it turns out, the physician in Cleveland discovered that Mark and a few others in the US (7 in the world) have a very, very rare PID that has never been reported in the history of medicine. We are thankful now that we went and stayed in Cleveland...who knows where we would be now. We also follow with a local immunologist who lives in ston Michigan, Dr. Duane on....we think the world of him. He works closely with the Cleveland physicians. Good luck in your pursuit of an immunologist. I would stick with one of those two. There are really no other immunologists in Michigan to speak of other then at Children's Hospital in Detroit...there are two there that are good. Let me know if you want their names. Take care~ Autumn mom to Mark Cd5-Cd19 PID/ A1A, GERD, Samter's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Welcome Joanne Re: PedPID email list Hi - I am the grandmother of two boys who were identified as having very low levels of IgG-1 and IgG-3 at ages well below age 10. There was no " diagnosis " but reference was made to hypogammaglobulinemia and the fact that in these instances, the problem is considered RARE....... Family members were tested for possible link and none was found. Environmental problem possibilities were discussed UNTIL the subject of a powerline located only 50 feet from our master bedroom window as well as living room window. The immunologist stated " there have been tests indicating a lowering of the immune function in mice exposed to electromagnetic fields; however, " they don't know how much of what happens in mice applies to people " (or words to that effect). The boys are cousins -- i.e., not of the same parents but one belonging to our daughter and one belonging to our son. I do recall something from a booklet recently received (by my daughter) regarding PID that seems to indicate my grandsons most likely would be classified as having secondary immune deficiencies. Perhaps I am not going to accomplish anything by subscribing to this PID list and undoubtedly won't be able to contribute to the cause either. However, if you determine I am incorrect, I would appreciate that information. Also if you have any information at all regarding children under the age of 4 years with the identical deficiencies, I would be very grateful to receive same. Thank you - Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Joanne, Welcome, there are alot of nice people in this group. Who have a lot of knowledge of this diseases. --- Ursula Holleman wrote: > > > Welcome Joanne > > Re: PedPID email list > > > Hi - I am the grandmother of two boys who were > identified as having > very > low levels of IgG-1 and IgG-3 at ages well below age > 10. There was no > " diagnosis " but reference was made to > hypogammaglobulinemia and the fact > that > in these instances, the problem is considered > RARE....... > > Family members were tested for possible link and > none was found. > Environmental problem possibilities were discussed > UNTIL the subject of a > powerline located only 50 feet from our master > bedroom window as well as > living room window. > > The immunologist stated " there have been tests > indicating a lowering of the > immune function in mice exposed to electromagnetic > fields; however, " they > don't know how much of what happens in mice applies > to people " (or words to > that effect). > > The boys are cousins -- i.e., not of the same > parents but one belonging to > our daughter and one belonging to our son. > > I do recall something from a booklet recently > received (by my daughter) > regarding PID that seems to indicate my grandsons > most likely would be > classified as having secondary immune deficiencies. > Perhaps I am not going > to accomplish anything by subscribing to this PID > list and undoubtedly won't > be able to contribute to the cause either. > > However, if you determine I am incorrect, I would > appreciate that > information. Also if you have any information at > all regarding children > under the age of 4 years with the identical > deficiencies, I would be very > grateful to receive same. Thank you - Joanne > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 hi julie I am from Bellingham WA. Amber Re: FW: PedPID email list > > >, > >Thank you for getting back to me. I live in Portland, Oregon. > >I will get in contact with I.D.F. I don't have alot of time to write, my e-mail is through work. I will tell you a little more about my situation later. > > > > Hrib-Karpinski wrote: > >> >> >> , >> >> Welcome to our group. I think that you'll be pleasantly surprised by the >> wealth of info avail fro this group. Sorry to hear about your fiance. That >> must be a difficult thing. Are you in a support group? I reciently lost >> my Dad and it was much more difficult that I would have ever anticipated. >> But thankfully this group helped me out with that too. And having to deal >> with an ill child is so tough in & of itself. How are you coping with it >> all? Do you have family around to help? >> >> And about ...have the Dr.'s identified a specific subclass yet? My >> first reccomendation is to contact the IDF(immune deficiency foundation) >> 1- and ask for a patient & family handbook. It's free of charge >> & we all use it. Gail is our resident IDF spokesperson & I'm sure she'll >> jump in w/more info too. The good news is that if is only IGg def. >> (meaning not def in other things such as IGa or IGm, etc) then it's one of >> the easier fixes(compared to some of the very complex things many in the >> group have). IGg is easily replaced with IVIg(intravenous gammaglobulin). >> Also IGg def. kids are most likely to outgrow their illness. >> >> Most common effects of IGg are sinus, ear & bronchi infections. Zach has >> had many ear infections til about 3 or 4yrs, then we've had chronic >> sinusitus ever since. He's had several bouts of bronchitis, but thankfully >> no astma. He's had 2 sinus surgeries and now has been on IVIG for 10 >> treatments and as of late he's like a new kid. we've been really healthy >> for two months. 1 year ago, we were pulling our hair out, wondering if our >> child would ever be well. And we thank God daily now. >> >> What part of the country do you live in? Also do you have an Immunologist? >> Most in the group use an Immuno, but some use peds. Gail can help you >> w/finding an Immuno if you need one. >> >> >> Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD, >> chronic sinusitis, IVIG, >> >> >My name is and I am a single mother of a 22 month old boy (). >> > >> >My fiancé, 's father, was murdered January of 1998, so needless to >> >say, there have been several difficult challenges placed before me. >> > >> >After several ear, lung, and sinus infections, 's doctor recommended >> >we do some blood tests. We found that he has an IGG deficiency. >> > >> >I don't really know too much about his condition, other than he is sick >> >75% of the time, and I continuously have to give him anti-biotics. >> > >> >Any information you could send my way would be deeply appreciated. >> > >> >Thank you, >> > >> > >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 : Welcome to the list,and sorry to hear about your loss. Do not let the dx scare you with your son and just get as educated as you can knowledge is power and makes things easier to deal with. Hope to hear from you soon! Take care and God Bless! annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: FW: PedPID email list >Date: Tue, 27 Jul 1999 01:29:55 -0400 > > > >, > >Welcome to our group. I think that you'll be pleasantly surprised by the >wealth of info avail fro this group. Sorry to hear about your fiance. >That >must be a difficult thing. Are you in a support group? I reciently lost >my Dad and it was much more difficult that I would have ever anticipated. >But thankfully this group helped me out with that too. And having to deal >with an ill child is so tough in & of itself. How are you coping with it >all? Do you have family around to help? > >And about ...have the Dr.'s identified a specific subclass yet? My >first reccomendation is to contact the IDF(immune deficiency foundation) >1- and ask for a patient & family handbook. It's free of >charge > & we all use it. Gail is our resident IDF spokesperson & I'm sure she'll >jump in w/more info too. The good news is that if is only IGg def. >(meaning not def in other things such as IGa or IGm, etc) then it's one of >the easier fixes(compared to some of the very complex things many in the >group have). IGg is easily replaced with IVIg(intravenous gammaglobulin). >Also IGg def. kids are most likely to outgrow their illness. > >Most common effects of IGg are sinus, ear & bronchi infections. Zach has >had many ear infections til about 3 or 4yrs, then we've had chronic >sinusitus ever since. He's had several bouts of bronchitis, but thankfully >no astma. He's had 2 sinus surgeries and now has been on IVIG for 10 >treatments and as of late he's like a new kid. we've been really healthy >for two months. 1 year ago, we were pulling our hair out, wondering if our >child would ever be well. And we thank God daily now. > > What part of the country do you live in? Also do you have an >Immunologist? >Most in the group use an Immuno, but some use peds. Gail can help you >w/finding an Immuno if you need one. > > >Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, >GERD, >chronic sinusitis, IVIG, > > > > > >My name is and I am a single mother of a 22 month old boy (). > > > >My fiancé, 's father, was murdered January of 1998, so needless to > >say, there have been several difficult challenges placed before me. > > > >After several ear, lung, and sinus infections, 's doctor recommended > >we do some blood tests. We found that he has an IGG deficiency. > > > >I don't really know too much about his condition, other than he is sick > >75% of the time, and I continuously have to give him anti-biotics. > > > >Any information you could send my way would be deeply appreciated. > > > >Thank you, > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 , Thank you for getting back to me. I live in Portland, Oregon. I will get in contact with I.D.F. I don't have alot of time to write, my e-mail is through work. I will tell you a little more about my situation later. Hrib-Karpinski wrote: > > > , > > Welcome to our group. I think that you'll be pleasantly surprised by the > wealth of info avail fro this group. Sorry to hear about your fiance. That > must be a difficult thing. Are you in a support group? I reciently lost > my Dad and it was much more difficult that I would have ever anticipated. > But thankfully this group helped me out with that too. And having to deal > with an ill child is so tough in & of itself. How are you coping with it > all? Do you have family around to help? > > And about ...have the Dr.'s identified a specific subclass yet? My > first reccomendation is to contact the IDF(immune deficiency foundation) > 1- and ask for a patient & family handbook. It's free of charge > & we all use it. Gail is our resident IDF spokesperson & I'm sure she'll > jump in w/more info too. The good news is that if is only IGg def. > (meaning not def in other things such as IGa or IGm, etc) then it's one of > the easier fixes(compared to some of the very complex things many in the > group have). IGg is easily replaced with IVIg(intravenous gammaglobulin). > Also IGg def. kids are most likely to outgrow their illness. > > Most common effects of IGg are sinus, ear & bronchi infections. Zach has > had many ear infections til about 3 or 4yrs, then we've had chronic > sinusitus ever since. He's had several bouts of bronchitis, but thankfully > no astma. He's had 2 sinus surgeries and now has been on IVIG for 10 > treatments and as of late he's like a new kid. we've been really healthy > for two months. 1 year ago, we were pulling our hair out, wondering if our > child would ever be well. And we thank God daily now. > > What part of the country do you live in? Also do you have an Immunologist? > Most in the group use an Immuno, but some use peds. Gail can help you > w/finding an Immuno if you need one. > > > Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD, > chronic sinusitis, IVIG, > > >My name is and I am a single mother of a 22 month old boy (). > > > >My fiancé, 's father, was murdered January of 1998, so needless to > >say, there have been several difficult challenges placed before me. > > > >After several ear, lung, and sinus infections, 's doctor recommended > >we do some blood tests. We found that he has an IGG deficiency. > > > >I don't really know too much about his condition, other than he is sick > >75% of the time, and I continuously have to give him anti-biotics. > > > >Any information you could send my way would be deeply appreciated. > > > >Thank you, > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 1999 Report Share Posted July 26, 1999 , Welcome to our group. I think that you'll be pleasantly surprised by the wealth of info avail fro this group. Sorry to hear about your fiance. That must be a difficult thing. Are you in a support group? I reciently lost my Dad and it was much more difficult that I would have ever anticipated. But thankfully this group helped me out with that too. And having to deal with an ill child is so tough in & of itself. How are you coping with it all? Do you have family around to help? And about ...have the Dr.'s identified a specific subclass yet? My first reccomendation is to contact the IDF(immune deficiency foundation) 1- and ask for a patient & family handbook. It's free of charge & we all use it. Gail is our resident IDF spokesperson & I'm sure she'll jump in w/more info too. The good news is that if is only IGg def. (meaning not def in other things such as IGa or IGm, etc) then it's one of the easier fixes(compared to some of the very complex things many in the group have). IGg is easily replaced with IVIg(intravenous gammaglobulin). Also IGg def. kids are most likely to outgrow their illness. Most common effects of IGg are sinus, ear & bronchi infections. Zach has had many ear infections til about 3 or 4yrs, then we've had chronic sinusitus ever since. He's had several bouts of bronchitis, but thankfully no astma. He's had 2 sinus surgeries and now has been on IVIG for 10 treatments and as of late he's like a new kid. we've been really healthy for two months. 1 year ago, we were pulling our hair out, wondering if our child would ever be well. And we thank God daily now. What part of the country do you live in? Also do you have an Immunologist? Most in the group use an Immuno, but some use peds. Gail can help you w/finding an Immuno if you need one. Wife to Tom, Mom to 6 1/2 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, >My name is and I am a single mother of a 22 month old boy (). > >My fiancé, 's father, was murdered January of 1998, so needless to >say, there have been several difficult challenges placed before me. > >After several ear, lung, and sinus infections, 's doctor recommended >we do some blood tests. We found that he has an IGG deficiency. > >I don't really know too much about his condition, other than he is sick >75% of the time, and I continuously have to give him anti-biotics. > >Any information you could send my way would be deeply appreciated. > >Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 Welcome to the Ped list. Do you know which variant of SCID your daughter has? I'm glad to hear that her health is stable and I hope they are able to find a match soon. Please let us know more about your family. You may also want to check out www.scid.net there is an email list there also for SCID families. PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Dear pedpid moderator: How does one disenroll from pedpid list? Sincerely, annette lennon mom to alissa cvid,asthmatic,ataxia > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: FW: PedPID email list >Date: Mon, 2 Aug 1999 19:26:28 -0400 > > > >Welcome to the Ped list. Do you know which variant of SCID your daughter >has? I'm glad to hear that her health is stable and I hope they are able >to >find a match soon. Please let us know more about your family. You may >also >want to check out www.scid.net there is an email list there also for SCID >families. > > > PedPID email list > > > You recently requested to subscribe to the Pediatric Primary Immune >Deficiency email list. A brief bio about yourself and your reason for >interest in the group is requested. I will then add your name to the >permanent mailing list. > > Thank you for your interest. > > PedPID Moderator > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Dear Ursula: I am going to digest mode things are too stressful right now and I will just be lurking and reading. I hope Macey is doing better with her sinusitis. Alissa is still fighting her ear infection and still running 100 on ibuprofen. She is IV'd on thursday. God Bless Take care. sincerely, annette > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: RE: FW: PedPID email list >Date: Tue, 3 Aug 1999 20:17:28 -0400 > > > >Annette please don't leave. I can unsubscribe you myself if you want but I >really wish you'd reconsider. > >Urs > > PedPID email list > > > > > > You recently requested to subscribe to the Pediatric Primary Immune > >Deficiency email list. A brief bio about yourself and your reason for > >interest in the group is requested. I will then add your name to the > >permanent mailing list. > > > > Thank you for your interest. > > > > PedPID Moderator > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Ursula and Annette, I am sorry to read that your children are sick. I hope that they will be on the mend soon and that the medications do their job. Hang in there ) Autumn mom to Mark Cd5-Cd19 PID/ GERD,A1A, Samter's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Annette please don't leave. I can unsubscribe you myself if you want but I really wish you'd reconsider. Urs PedPID email list > > > You recently requested to subscribe to the Pediatric Primary Immune >Deficiency email list. A brief bio about yourself and your reason for >interest in the group is requested. I will then add your name to the >permanent mailing list. > > Thank you for your interest. > > PedPID Moderator > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Allo, My name is Nuno Vilaça and i'm Madalena's father a 2,5 years old girl suffering from SCID. As requested I would give a brief introduction to our family. We Originally are from Portugal. Madalena our daugther suffering from SCID was born there. We lived there until the summer 1998 when due to her very serious ilness we were forced to move. She was first admited to the Hospital (Lisbon) in March 1998. Due to a non existing diagnostic in LIsbon and also due to her permant deterioration we decided to move to London so that she could atend Great Ormond Street Hospital (GOS) known as one of the best in the world. In fact as son she arrived in only one week they diagnose Madalena as a SCID, fortunatly not a severe one otherwise she would have been dead by now. She remained isolated in a special room for about 4 mounths. By November 1998 she was free to go home for the first time in 8 months. GOS did in fact an amazing job, which even myself never thought to be possible. By that time we found an new home in London and I started working in here. So we have been living in London since that time. Madalena still refuses to eat normally and she atends GOS every 2 weeks for treatment. However she is recovering in weight and height. Now she is just waiting for a donor so that she can go trough a BMT. Unfortunately the doctores couldn't find the gene or cause for Madalena´s illenes which means that a pre-natal test on a future baby isn´t very accurate. However and after 1 year and a lot of thinking me and my wife decided to have another child, despited the risks involved. So we were very much interest on speaking to another family in a similar situation. That's our short story. Whish you all the best, Nuno >> >> >>Welcome to the Ped list. Do you know which variant of SCID your daughter >>has? I'm glad to hear that her health is stable and I hope they are able >>to >>find a match soon. Please let us know more about your family. You may >>also >>want to check out www.scid.net there is an email list there also for SCID >>families. >> >> >> PedPID email list >> >> >> You recently requested to subscribe to the Pediatric Primary Immune >>Deficiency email list. A brief bio about yourself and your reason for >>interest in the group is requested. I will then add your name to the >>permanent mailing list. >> >> Thank you for your interest. >> >> PedPID Moderator >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 Nuno, welcome to the group. I'm glad to hear that Madalena is home and living with the family. Is she receiving IVIG at GOSH every 2 weeks or is it for clinic visits that you go? Have you had another child or are you and your wife attempting that now? It is possible that this next child could be a match for your daughter. I am by no means the SCID expert but I know that there are quite a few families on the SCID list that have had related donor BMT's and many that have had matched unrelated donor transplants. I would encourage you to subscribe to that list also. http://www.scid.net/scidmail.html I hope her health continues to remain stable and that we are helpful in any way we can be. We had a list member just recently unsubscribe who also attends GOSH in preparation for BMT. Her daughter is 11-12 yrs old I believe and has Nezelof SCID. Their name is Howes. their daughters name is . You can find their introduction at http://www.netpage.org/PedPID/_PedPID/Introduction%20-%20%20Howes.tx t I'm sure wouldn't mind if you emailed her directly. She has taken a break from the list while the still search for a donor. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Nuno: Welcome to our group. I hope that you can find the support and answers you are looking for. My son, , is a cancer survivor and has some immune def. that his doctors are still trying to sort out. has high risk Accute Lymphacitic Luekemia, and when his oncologists found out I was pregnant, they encouraged us to check into cord blood banking. Even though had been off of chemo for about 2 years, we qualified for a sibling collection and storage at a cord blood bank in California. We were warned that this is a 1in4 chance of matching, but if he has a relaspe, or secondary cancer, all the doctors who deal with have said that this is the safest, and best way to go if the transplant is needed. My understanding is that even in a 5 out of 6 match--the stem cells are less likely to cause the GVHD so common in donar transplants. We has a healthy, beautiful girl on Aug. 18th, and someday her cord blood may save her brother's life. I think that if you and your wife want another child, then to go for it. A lot of people, including family, may not understand your choice, but that is something you have to make them understand. I applaude you for it and if you need info about cord blood banking, I will try to help you. --mom to -dysgammaglobulinenemia, ALL-in remission PedPID email list >> >> >> You recently requested to subscribe to the Pediatric Primary Immune >>Deficiency email list. A brief bio about yourself and your reason for >>interest in the group is requested. I will then add your name to the >>permanent mailing list. >> >> Thank you for your interest. >> >> PedPID Moderator >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Nuno, Welcome:o). You will like this group. My daughter has congential neutropenia, hypogammaglobulinemia and chronic sinusitis. Congratulations on your wife's pregnancy. God Bless === and (neutropenic and immune deficent) mom to Evan 6, 4 and Abby Rose (almost 2) _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Betsy welcome to the list. We have a wide variety of families here. Some dealing with PID's and some also dealing with autoimmune diseases. PID's and autoimmune diseases do tend to run hand in hand. Several families here might be able to better explain the why's and how's. Please feel free to ask questions and tell us more about your family. Re: PedPID email list Hi, My name is Betsy Bald and I am the mother of a child who has been dxed by different physicians with an immunodeficiency. is now age 13. She was injured by her 2nd DPT/OPV at age 4.5 mos and has seizures. At age 15 mos, she was discovered to have hypogammaglobulinemia - almost agammaglobulinemia. She started receiving IVIG at that time which helped her seizures greatly. Eventually, she had problems with her port - infection and clots (two pulmonary emboli) and her port was removed in 1992. The IVIG was stopped because of availability and inability to start an IV. Now her IgG is monitored when she becomes sick. She also has low IgA and IgM. She has low IgE and almost no SIgA. In 1995 she started seizing again and now has seizures, and is autistic. A local allergy doctor has said she has transient hypogammaglobulinemia of infancy even though she is now 13 years old and her IgG is still quite low. It runs about 350-400. She has frequent (almost constant) sinusitis and has now been on antibiotics for the sinusitis since May. My husband's name is Mike and is our only child. I also have SLE and wonder whether this is somehow connected to 's immune problem. Hope this is enough information for now...Let me know if you need any more. I really look forward to receiving mail from this group. Thanks so much... Betsy Bald Betsy46@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Welcome to our group. We have several families who have PID children in their teens. Feel free to say hello and chat. PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator My intrest is that I have PID. A brief bio is that I am a 13 year-old female from Indiana. I was diagnosed when I was just 9 months old. I love to shop and talk on the phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Welcome to the list Miss Indiana (you forgot to put your name). I think you are the first non-parent that I have seen on here, and I think its great. {{{{{{{{BIG HUGS}}}}}}}}} , wife to Preston, mother to Shelbie 8, Mandy 3 and 14 months Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families Registered Chat for Preemies Friends and Family. ---------------------------------------------------------------------------- ---------------------------------------------- HEART-----Heart, intellect, awareness, mind, inner person, inner feelings, deepest thoughts, inner self. PedPID email list > > > You recently requested to subscribe to the Pediatric Primary Immune >Deficiency email list. A brief bio about yourself and your reason for >interest in the group is requested. I will then add your name to the >permanent mailing list. > > Thank you for your interest. > > PedPID Moderator > > My intrest is that I have PID. A brief bio is that I am a 13 year-old >female from Indiana. I was diagnosed when I was just 9 months old. I love to >shop and talk on the phone. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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