Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 We are in WA state and Lucas is 15. He has CVID on Sub Q Gammagard. Was on IVIG from 3-10yrs and then switched. Has other issues that go along with PIDs as wells as ADD, Bipolar, etc etc BARBIE ________________________________ From: " mindy@... " <mindy@...> Sent: Tue, May 10, 2011 2:33:26 PM Subject: Re: Roll Call We are in northern Virginia, is 9, and has CVID secondary to mitochondrial disease (plus autism, asthma and multiple food allergies, medication intolerances, GERD, muscle pain/weakness, migraines/CVS). He is now on Hizentra SQ and was diagnosed with CVID a little over a year ago. We have six other kids ages 4-13, all with asthma and food allergies, and a few with extra medical diagnoses, too Mindy > We haven't done a roll call in a long time, I'd love to see who is still > here and learn more about some of our newer members. > > If you are willing, please answer the following questions: > > What State do you live in? > > What is your child(ren)'s age and diagnosis? > > Are they using Subq or IVIG? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 We live in Florida. My daughter Abby is 6 yrs old and has CVID, asthma, kidney reflux, chronic constipation, acid reflux, vocal cord polyps, Sleep apnea, overflow incontinence, Chronic staph, and autism just to name a few. She has been on IVIG for 2 yrs and just had her 2 nd port a cath surgery after the first one malfunctioned. . Re: Roll Call We are in northern Virginia, is 9, and has CVID secondary to mitochondrial disease (plus autism, asthma and multiple food allergies, medication intolerances, GERD, muscle pain/weakness, migraines/CVS). He is now on Hizentra SQ and was diagnosed with CVID a little over a year ago. We have six other kids ages 4-13, all with asthma and food allergies, and a few with extra medical diagnoses, too Mindy > We haven't done a roll call in a long time, I'd love to see who is still > here and learn more about some of our newer members. > > If you are willing, please answer the following questions: > > What State do you live Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 What State: ColoradoKiddos: 13, Combined Immune Deficiency, Unspecified, Bone Marrow Failure Unspecified(and all the others with it asthma, etc etc)Mari 8, healthyMax 4, Combined Immune Deficiency Unspecified, Bone Marrow Failure Unspecified (but may be thinking Schwachman Diamond Syndrome now) and Suspected Mitochondrial Disease (plus others.. asthma, developmental delay, etc etc) Treatments:Have used IVIG with , has been off for 2 years, may be restarting IVIG with him soon secondary to decreased lung function and too many infections. Is on Daily AntibioticsMax: discussing IVIG and GCSF (GCSF due to now severe neturopenia) Missy From: kristinz4 <kristin-smith@...> Subject: Re: Roll Call Date: Tuesday, May 10, 2011, 12:11 PM Â I'll start! What State do you live in? Indiana What is your child(ren)'s age and diagnosis? Conner - 16 with NEMO (cured by BMT) and MBL deficiency Hayden - 16 MBL deficiency Evan - 16 MBL deficiency Kelsey - 15 NEMO carrier and MBL deficiency Are they using Subq or IVIG? No treatment at this time (but have done both subq and IVIG) Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 What State: ColoradoKiddos: 13, Combined Immune Deficiency, Unspecified, Bone Marrow Failure Unspecified(and all the others with it asthma, etc etc)Mari 8, healthyMax 4, Combined Immune Deficiency Unspecified, Bone Marrow Failure Unspecified (but may be thinking Schwachman Diamond Syndrome now) and Suspected Mitochondrial Disease (plus others.. asthma, developmental delay, etc etc) Treatments:Have used IVIG with , has been off for 2 years, may be restarting IVIG with him soon secondary to decreased lung function and too many infections. Is on Daily AntibioticsMax: discussing IVIG and GCSF (GCSF due to now severe neturopenia) Missy From: kristinz4 <kristin-smith@...> Subject: Re: Roll Call Date: Tuesday, May 10, 2011, 12:11 PM Â I'll start! What State do you live in? Indiana What is your child(ren)'s age and diagnosis? Conner - 16 with NEMO (cured by BMT) and MBL deficiency Hayden - 16 MBL deficiency Evan - 16 MBL deficiency Kelsey - 15 NEMO carrier and MBL deficiency Are they using Subq or IVIG? No treatment at this time (but have done both subq and IVIG) Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hi, We live in Montana. Bradley is almost 9 years old with IGA Def and Partial Antibody Def. He does not use Subq or Ivig. Thanks! Amy Hand _____ From: [mailto: ] On Behalf Of kristinz4 Sent: Tuesday, May 10, 2011 11:11 AM Subject: Re: Roll Call I'll start! What State do you live in? Indiana What is your child(ren)'s age and diagnosis? Conner - 16 with NEMO (cured by BMT) and MBL deficiency Hayden - 16 MBL deficiency Evan - 16 MBL deficiency Kelsey - 15 NEMO carrier and MBL deficiency Are they using Subq or IVIG? No treatment at this time (but have done both subq and IVIG) Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 What State do you live in? Ontario Canada What is your child(ren)'s age and diagnosis? is 9 and has Hyper IgE (Job's Syndrome) Are they using Subq or IVIG? This is his 3rd year on IVIG (Gamunex administered in hospital every 4 weeks) Kim, mom to age 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 What State do you live in? Nebraska What is your child(ren)'s age and diagnosis? Kayla – type one diabetic, 15 Noah – type one diabetic, 12 – CVID, 8 Are they using Subq or IVIG? IVIG From: kristinz4 Sent: Tuesday, May 10, 2011 12:07 PM Subject: Roll Call We haven't done a roll call in a long time, I'd love to see who is still here and learn more about some of our newer members. If you are willing, please answer the following questions: What State do you live in? What is your child(ren)'s age and diagnosis? Are they using Subq or IVIG? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 What State do you live in? Indiana What is your child(ren)'s age and diagnosis? (3 - 4in July). XLA and Colitis. (10 years) & (10 months) ok Are they using Subq or IVIG? IVIG From: kristin-smith@... Date: Tue, 10 May 2011 17:07:37 +0000 Subject: Roll Call We haven't done a roll call in a long time, I'd love to see who is still here and learn more about some of our newer members. If you are willing, please answer the following questions: What State do you live in? What is your child(ren)'s age and diagnosis? Are they using Subq or IVIG? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 What State do you live in? GA What is your child(ren)'s age and diagnosis? JB is 7 and has CVID, asthma, GERD, MBL deficiency Are they using Subq or IVIG? Sub Q push method with Hizentra 4 days per week Even though I do not have alot to say or advise to give since we have only been diagnosed a year I do read the posts and am learning from all of you. -Seletive Antibody Deficiency and MBL deficient Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 What State do you live in? South Carolina What is your child(ren)'s age and diagnosis? Jake age 9, selective antibody def. and aspergergers Are they using Subq or IVIG? One more infusion of Vivaglobin subq then switching to Hizentra subq been infusing now for 7 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We live in Alabama. Laurel just turned 6 and is diagnosed with CVID. We have not started IG replacement therapy yet. She has been on antibiotics for 30 months. Our immunologist is hesitant about starting her on IVIG because she has responded well to the antibiotics. If any of you have experience with this, let me know. ~Faith Faith L. Pack Mom to Laurel age 6 CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We are in IL -- Chicago suburbs will be 4 in July, X-linked XLA is 20 months, X-linked XLA They've both been on IVIG for a year now after being diagnosed last April. I hope the next roll call we can say we're expecting a little sibling! Kimberley > > We haven't done a roll call in a long time, I'd love to see who is still here and learn more about some of our newer members. > > If you are willing, please answer the following questions: > > What State do you live in? > > What is your child(ren)'s age and diagnosis? > > Are they using Subq or IVIG? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We are in IL -- Chicago suburbs will be 4 in July, X-linked XLA is 20 months, X-linked XLA They've both been on IVIG for a year now after being diagnosed last April. I hope the next roll call we can say we're expecting a little sibling! Kimberley > > We haven't done a roll call in a long time, I'd love to see who is still here and learn more about some of our newer members. > > If you are willing, please answer the following questions: > > What State do you live in? > > What is your child(ren)'s age and diagnosis? > > Are they using Subq or IVIG? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We live in Georgia Macey is 16 - CVID is 18 - college bound Macey is on subq Hizentra 8 gms a week. Ursula Holleman also " raising " Les - husband - CVID and on his second month of Hizentra On Wed, May 11, 2011 at 9:40 AM, Kimberley <kimberley.larsen@...>wrote: > > > We are in IL -- Chicago suburbs > > will be 4 in July, X-linked XLA > is 20 months, X-linked XLA > > They've both been on IVIG for a year now after being diagnosed last April. > > I hope the next roll call we can say we're expecting a little sibling! > > Kimberley > > > > > > > We haven't done a roll call in a long time, I'd love to see who is still > here and learn more about some of our newer members. > > > > If you are willing, please answer the following questions: > > > > What State do you live in? > > > > What is your child(ren)'s age and diagnosis? > > > > Are they using Subq or IVIG? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Also just to answer an earlier question. No list per se is gathered and kept. You can search the archives for a particular diagnosis being mentioned or you can look at a particular members profile but if a list was out there it might be too easy for an outside company or group to get ahold of and use in the wrong way. You'd be amazed at how many member requests I get from companies and research groups who want to " lurk " on the list to find study participants and ask everyone questions. This is not the place for that. I refer all of that to the IDF or the Modell Foundation. They can go through them to screen any possible interaction to their members. Ursula (taking off her moderators cap) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Lucas age 16, subclass deficient 2 and 4, transitioning off Viva now to we do not yet know what Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Ooopss! Forgot my name. I'm Cyndi, mom to Lucas! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Virginia Son is 11yo with Hypogammaglobulinemia IVIG for years now Also has Hypothyroidism, PANDAS, Seizure Disorder, and Autism - Nonverbal Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We live in No. Virginia I have 6 kids. My 8 yr old has X linked Hyper Igm and was treated with a Bone Marrow transplant. My 2 yr old is in the diagnosing process for PID. My others ages 10, 7, 5, and 5 are for the most part healthy. No IVIG anymore for the transplanted kid and not yet for the baby. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 We live in New Orleans, Louisiana My son is e, he has (copying the immunolgy consult report here:) Â Â " e has a Combined Immune Deficiency - he has a low number of memory B-cells, and decreased function of B, T, and NK, natural killer, cells. He has decreased expression of perforin and granzyme B in NK cells indicating reduced function. There is impaired function of lymphocyte subpopulations. Reduced CD27+ B-cells indicating low percentage of memory B cells. Reduced percentage of CD3/CD4(and CD8)/CD45 RO cells, indicating low percentage of memory T cells. Low varicella titers despite hx of immunization and subsequent severe natural infection. Low tetanus titers despite immunization. Reduced IgG3 and low total IgG troughs. Bone marrow studies show a hypocellularity of 20%, and a reversal of the CD3/CD4/CD8 ratio. e has severe chronic neutropenia which is being treated with Filgrastim, Granulocyte-Colony-Stimulating-Factor injections every Mon-Wed-Fri. In summary, e has a Combined Immune Deficiency Disorder in which multiple arms of his immune system are affected. " He previously received IVIG, but now he is on Hizentra Subq weekly. Nice to be in this group....thanks......Sue From: kristinz4 <kristin-smith@...> Subject: Roll Call Date: Tuesday, May 10, 2011, 5:07 PM Â We haven't done a roll call in a long time, I'd love to see who is still here and learn more about some of our newer members. If you are willing, please answer the following questions: What State do you live in? What is your child(ren)'s age and diagnosis? Are they using Subq or IVIG? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2011 Report Share Posted May 12, 2011 Ursula, thank you. I really like this group and forget that people are out there to use it for the wrong use or for their personal financial gain. Thank you for protecting the integrity of the group. From: uahollem@... Date: Wed, 11 May 2011 11:22:48 -0400 Subject: Re: Re: Roll Call Also just to answer an earlier question. No list per se is gathered and kept. You can search the archives for a particular diagnosis being mentioned or you can look at a particular members profile but if a list was out there it might be too easy for an outside company or group to get ahold of and use in the wrong way. You'd be amazed at how many member requests I get from companies and research groups who want to " lurk " on the list to find study participants and ask everyone questions. This is not the place for that. I refer all of that to the IDF or the Modell Foundation. They can go through them to screen any possible interaction to their members. Ursula (taking off her moderators cap) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 We live in Mid Mi. We have four children, Olivia, 15, Savannah, 13, Donovan, 11, and Brennan, 9 , all with asthma/allergies/GERD, three youngest with CVID, on monthly IVIG. Still working on the youngest one who is still FTT and hoping the Periactin he's just started will help. He is also having lots of dental issues( valarie > > > We live in No. Virginia > I have 6 kids. > My 8 yr old has X linked Hyper Igm and was treated with a Bone Marrow transplant. > My 2 yr old is in the diagnosing process for PID. > My others ages 10, 7, 5, and 5 are for the most part healthy. > No IVIG anymore for the transplanted kid and not yet for the baby. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 What State do you live in? Minnesota What is your child(ren)'s age and diagnosis? is 6yr... was diagnosed at 15mts of age, hypogamma has low IGG, IGA. IGM, IGG subclasses, NK cells and Tcell abnormalities, has had a brain tumor, diabetes, arthritis, variant form of CF, WPW syndrome, Alport's syn, etc... I have an immune deficiency too along with angioedema, lupus, alport's, not on IG yet Are they using Subq or IVIG? does Hizentra 10ml twice week Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 We live in Seattle WA 21yrs old CVID since 3 years of age IVIG every 14 days no sub Q she swelled up too much! Mom Lorri Kraft From: [mailto: ] On Behalf Of Franson Sent: Thursday, June 02, 2011 8:02 PM Subject: Re: Roll Call What State do you live in? Minnesota What is your child(ren)'s age and diagnosis? is 6yr... was diagnosed at 15mts of age, hypogamma has low IGG, IGA. IGM, IGG subclasses, NK cells and Tcell abnormalities, has had a brain tumor, diabetes, arthritis, variant form of CF, WPW syndrome, Alport's syn, etc... I have an immune deficiency too along with angioedema, lupus, alport's, not on IG yet Are they using Subq or IVIG? does Hizentra 10ml twice week Quote Link to comment Share on other sites More sharing options...
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