Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Name: Blair General Location/state/ city: Surprise, AZ Pid Pumpkin: Hayden Age: 4 Grade:preschool School Status: 4 days a week when he can go & therapy doesn't interrupt SIblings & Ages: Tanner - 2 Diagnosis: Functioning antibody deficency & variables of common immune deficency How Long Since Diagnosis: 1 yr but we knew he had problems with his immune system early on Treatment: Privigen 10gms every 3 weeks Additional Health Concerns: mitochondrial disease, unknown GI disease, CVI, peripherial vison loss, autism, metabolic disorder of unknown origin, food & seasonal allergies, Best Website for dealing with all this PI stuff: love this group, although I feel bad as i never post, still to new to this all (I don't have any answers- sorry) Best resource you've found: friends on here! thank you to all of those who have helped me along the way! Best PI Tip: hmmmmmm.....well, I saw this on a listserve some where & I love it : An observant parent’s evidence may be disproved but should never be ignored - Anonymous Tell us a little about yourself/your child, or anything! - I pretty much have no time to myself (like most mom's on here I'm sure!) but i love scrapbooking. Hayden loves numbers, math, reading, drawing, & is an amazing kid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Name: Putnam > General Location/state/ city: Euless, TX > Pid Pumpkin: > Age: 13 > Grade:8 > School Status: missed 58 days last year, has missed 13 days so far this year. But, she has stayed on the A, B honor roll. > SIblings & Ages: Tyler 11, step brothers Ethan 10, ph 9, Isaac 6, and Will 4. > Diagnosis: Common Variable Immune Deficiency > How Long Since Diagnosis: she's been sick since Aug. 08, diagnosed in May 09. > Treatment: IVIG every 4 weeks. > Additional Health Concerns: asthma, chronic sinus infections > Best Website for dealing with all this PI stuff: primaryimmune.org > Best resource you've found: primaryimmune.org > Tell us a little about yourself/your child, or anything! -I am new to this primary immune stuff, enjoy reading what you all write even though it's way over my head, enjoy researching, have zero time for me as all parents do, love making all kinds of crafts and cooking. is an amazing teen that pushes herself to be the best, believes she is the best (heehee), and has the most amazing upbeat attitude through all of this. She also enjoys making crafts and is an awesome cook! > > Name: Blair > General Location/state/ city: Surprise, AZ > Pid Pumpkin: Hayden > Age: 4 > Grade:preschool > School Status: 4 days a week when he can go & therapy doesn't interrupt > SIblings & Ages: Tanner - 2 > Diagnosis: Functioning antibody deficency & variables of common immune deficency > How Long Since Diagnosis: 1 yr but we knew he had problems with his immune system early on > Treatment: Privigen 10gms every 3 weeks > Additional Health Concerns: mitochondrial disease, unknown GI disease, CVI, peripherial vison loss, autism, metabolic disorder of unknown origin, food & seasonal allergies, > Best Website for dealing with all this PI stuff: love this group, although I feel bad as i never post, still to new to this all (I don't have any answers- sorry) > Best resource you've found: friends on here! thank you to all of those who have helped me along the way! > Best PI Tip: hmmmmmm.....well, I saw this on a listserve some where & I love it : > An observant parent’s evidence may be disproved but should never be ignored - Anonymous > Tell us a little about yourself/your child, or anything! - I pretty much have no time to myself (like most mom's on here I'm sure!) but i love scrapbooking. > Hayden loves numbers, math, reading, drawing, & is an amazing kid. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Group, I am sitting here smiling while reading these posts---it gives me such hope and a feeling of normalcy to hear about older kids who play sports, go to school & are an overall active member of society. Sometimes I feel like the future is so questionable for my little ones--hearing your little bits of information has actually boosted my outlook. Thanks for sharing & for having such inspirational kiddos, Pavlu ________________________________ From: Amy <mom2lilnick@...> Sent: Tue, November 10, 2009 5:46:31 PM Subject: Roll call Name: Amy General Location/state/ city: Eastern Nebraska Pid Pumpkin: Age: 6 Grade: 1st School Status: Public school SIblings & Ages: Kayla, 13 and Noah 10 Diagnosis: CVID How Long Since Diagnosis: 5 years Treatment: IVIG every 4 weeks.. sometimes abx in the winter. Additional Health Concerns: Asthma, IBS, reflux Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! Nick is amazing, he is smart, athletic and mischevious. . typical boy. This may be a good way to connect with others in your area, or your childs age range Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Name: General Location/state/ city: Montgomery, Al Pid Pumpkin: and Tori Age: A is 13 and T is 10 Grade: 8th and 4th School Status: Public school SIblings & Ages: No more! Diagnosis: A has Selective IgG and T has Hypogam How Long Since Diagnosis: 3 years Treatment: A does SubQ every week and T is being monitored. Additional Health Concerns: Asthma, IBS, migraines Best Website for dealing with all this PI stuff: IDF and this site Tell us a little about yourself/your child, or anything! Before treatment, was homebound and mostly bed bound-he was so sick! Now he has perfect attendance, so far, this year at school and church. He runs the mile in 7 minutes. He is an awesome bass player and currently in 6 bands, even has a paying gig! He is a " normal " teenager. Last infusion, he strapped his pump on his back and wandered the neighborhood with his friends. Tori is reasonably healthy. She seems to fight things off on her own. She swims competitively and is making straight A's in an Accelerated Academic School. They are now healthier than their friends. This may be a good way to connect with others in your area, or your childs age range From: pavlutracy@... Date: Tue, 10 Nov 2009 19:39:27 -0800 Subject: Re: Roll call Group, I am sitting here smiling while reading these posts---it gives me such hope and a feeling of normalcy to hear about older kids who play sports, go to school & are an overall active member of society. Sometimes I feel like the future is so questionable for my little ones--hearing your little bits of information has actually boosted my outlook. Thanks for sharing & for having such inspirational kiddos, Pavlu ________________________________ From: Amy <mom2lilnick@...> Sent: Tue, November 10, 2009 5:46:31 PM Subject: Roll call Name: Amy General Location/state/ city: Eastern Nebraska Pid Pumpkin: Age: 6 Grade: 1st School Status: Public school SIblings & Ages: Kayla, 13 and Noah 10 Diagnosis: CVID How Long Since Diagnosis: 5 years Treatment: IVIG every 4 weeks.. sometimes abx in the winter. Additional Health Concerns: Asthma, IBS, reflux Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! Nick is amazing, he is smart, athletic and mischevious. . typical boy. This may be a good way to connect with others in your area, or your childs age range Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Name: General Location/state/ city: Montgomery, Al Pid Pumpkin: and Tori Age: A is 13 and T is 10 Grade: 8th and 4th School Status: Public school SIblings & Ages: No more! Diagnosis: A has Selective IgG and T has Hypogam How Long Since Diagnosis: 3 years Treatment: A does SubQ every week and T is being monitored. Additional Health Concerns: Asthma, IBS, migraines Best Website for dealing with all this PI stuff: IDF and this site Tell us a little about yourself/your child, or anything! Before treatment, was homebound and mostly bed bound-he was so sick! Now he has perfect attendance, so far, this year at school and church. He runs the mile in 7 minutes. He is an awesome bass player and currently in 6 bands, even has a paying gig! He is a " normal " teenager. Last infusion, he strapped his pump on his back and wandered the neighborhood with his friends. Tori is reasonably healthy. She seems to fight things off on her own. She swims competitively and is making straight A's in an Accelerated Academic School. They are now healthier than their friends. This may be a good way to connect with others in your area, or your childs age range From: pavlutracy@... Date: Tue, 10 Nov 2009 19:39:27 -0800 Subject: Re: Roll call Group, I am sitting here smiling while reading these posts---it gives me such hope and a feeling of normalcy to hear about older kids who play sports, go to school & are an overall active member of society. Sometimes I feel like the future is so questionable for my little ones--hearing your little bits of information has actually boosted my outlook. Thanks for sharing & for having such inspirational kiddos, Pavlu ________________________________ From: Amy <mom2lilnick@...> Sent: Tue, November 10, 2009 5:46:31 PM Subject: Roll call Name: Amy General Location/state/ city: Eastern Nebraska Pid Pumpkin: Age: 6 Grade: 1st School Status: Public school SIblings & Ages: Kayla, 13 and Noah 10 Diagnosis: CVID How Long Since Diagnosis: 5 years Treatment: IVIG every 4 weeks.. sometimes abx in the winter. Additional Health Concerns: Asthma, IBS, reflux Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! Nick is amazing, he is smart, athletic and mischevious. . typical boy. This may be a good way to connect with others in your area, or your childs age range Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Name: Rogena General Location/state/ city: West Michigan Pid Pumpkins: Cole & Flynn Age: 6 & 5 Grade: 1st & Kdg. School Status: Public school SIblings & Ages: , 19 and Wyatt 8 Diagnosis: CVID (originally IgG) & IgA (respectively) How Long Since Diagnosis: 11 months (originally 4yrs.) & 2 years Treatment: IVIG every 4 weeks, ABX during school year & None (respectively) Additional Health Concerns: EED, GERD, Asthma, IBS, Dairy Allergic, PDD Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! I am fortunate to stay-at-home to keep track of all this stuff! My boys LOVE to be boys and we try to keep life as normal as possible. They are WonDerFuL and I love them with ALL my heart! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Name: Amy General Location/state/ city: West Michigan (north of Grand Rapids) Pid Pumpkins: Kelley, na & Kaitlyn Age: 5 & 4 (twins) Grade: Kdg. & Preschool School Status: Public school SIblings & Ages: (age 9) Diagnosis: CVID How Long Since Diagnosis: 8 months & 3 weeks Treatment: SubQ twice weekly, antibiotics constantly Additional Health Concerns: GERD, Asthma, Chronic sinus & ear infections Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! My kids are very energetic and keep us all very busy. I'm a stay at home mom who volunteers a lot of my free time (when the kids aren't at the doctor).  From: nogirlsallboys <rbrinks@...> Subject: Re: Roll call Date: Saturday, November 14, 2009, 6:45 PM  Name: Rogena General Location/state/ city: West Michigan Pid Pumpkins: Cole & Flynn Age: 6 & 5 Grade: 1st & Kdg. School Status: Public school SIblings & Ages: , 19 and Wyatt 8 Diagnosis: CVID (originally IgG) & IgA (respectively) How Long Since Diagnosis: 11 months (originally 4yrs.) & 2 years Treatment: IVIG every 4 weeks, ABX during school year & None (respectively) Additional Health Concerns: EED, GERD, Asthma, IBS, Dairy Allergic, PDD Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! I am fortunate to stay-at-home to keep track of all this stuff! My boys LOVE to be boys and we try to keep life as normal as possible. They are WonDerFuL and I love them with ALL my heart! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 _____ From: [mailto: ] On Behalf Of Amy Shea Sent: Saturday, November 14, 2009 6:14 PM Subject: Re: Roll call Name: Amy General Location/state/ city: Billings, MT Pid Pumpkins: Bradley Age: 7 Grade: 1rst Grade School Status: Public school SIblings & Ages: 11 Diagnosis: IGA Def How Long Since Diagnosis: 5 years Treatment: Antibiotics when needed for reoccurring infections Additional Health Concerns: waiting to hear from doctor about some concerns Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! We are very fortunate that Bradley is really doing quit well. He did have H1N1 but did really well on the Tamiflu and recovered in 6 days. I pray a lot over my children's health and have been so so blessed. From: nogirlsallboys <rbrinkslive (DOT) <mailto:rbrinks%40live.com> com> Subject: Re: Roll call groups (DOT) <mailto:%40> com Date: Saturday, November 14, 2009, 6:45 PM Name: Rogena General Location/state/ city: West Michigan Pid Pumpkins: Cole & Flynn Age: 6 & 5 Grade: 1st & Kdg. School Status: Public school SIblings & Ages: , 19 and Wyatt 8 Diagnosis: CVID (originally IgG) & IgA (respectively) How Long Since Diagnosis: 11 months (originally 4yrs.) & 2 years Treatment: IVIG every 4 weeks, ABX during school year & None (respectively) Additional Health Concerns: EED, GERD, Asthma, IBS, Dairy Allergic, PDD Best Website for dealing with all this PI stuff: IDF Tell us a little about yourself/your child, or anything! I am fortunate to stay-at-home to keep track of all this stuff! My boys LOVE to be boys and we try to keep life as normal as possible. They are WonDerFuL and I love them with ALL my heart! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hello is 5 yrs old He has been diagnosed with SAD ( selective antibody deficiency) We have a Great Immunologist @ MGH in Boston Ma He is currently on IVIG this month will be #4 \ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Hello is 5 yrs old He has been diagnosed with SAD ( selective antibody deficiency) We have a Great Immunologist @ MGH in Boston Ma He is currently on IVIG this month will be #4 \ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 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 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 > > If you are willing, please answer the following questions: > > What State do you live in? IL > > What is your child(ren)'s age and diagnosis? > Charlie,10, CVID Kate, 8, CVID Tommy, 7, CVID Baby #4 due Oct 4 > > Are they using Subq or IVIG? > I have 2 on Sub Q and one on IV. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 > > If you are willing, please answer the following questions: > > What State do you live in? IL > > What is your child(ren)'s age and diagnosis? > Charlie,10, CVID Kate, 8, CVID Tommy, 7, CVID Baby #4 due Oct 4 > > Are they using Subq or IVIG? > I have 2 on Sub Q and one on IV. > > 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 Missouri. Tate 13 (CVID) Tanner 16 (healthy) Tate has been on SCIG, but has just switched to IVIG temporarily with his second infusion coming up this Friday. 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 Missouri. Tate 13 (CVID) Tanner 16 (healthy) Tate has been on SCIG, but has just switched to IVIG temporarily with his second infusion coming up this Friday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2011 Report Share Posted May 10, 2011 Name: April General Location/state/city: Baltimore, MD Pid Pumpkin: Ryder Age: 3yr 9 months Grade: pre-k School Status: 3 half days of special ed pre-k, applied for regular pre-k for next school year which would be 5 half days and will find out end of June if he is accepted or not Siblings & Ages: Zak (twin brother) Diagnosis: CVID How Long Since Diagnosis: January 2011 Treatment: Hizentra, 2grams weekly Additional Health Concerns: Klinefelter Syndrome (genetic disorder), partial deletion Chromosome 15 (15q11.2 BP1-BP2), asthma, developmental delays, possible seizures, behavioral concerns (part of the genetic stuff) Best Website for dealing with all this PI stuff: We are new to this, but I have found the IDF Forum a great place as well as this group. Best resource you've found: IDF, NP at our Immunology Clinic (s Hopkins) has been great Best PI Tip: Go with your gut, don't let the doctors tell you everything is fine if you don't feel it is. 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 do you live in? Pennsylvania What is your child(ren)'s age and diagnosis? is 7yo and has CVID Are they using Subq or IVIG? Currently on IVIG but we are switching to subq due to the side effects 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: California Children: tristen 6 (cvid) diagnosed Aug 2009 Kaitlyn 9 ( healthy) Doing subq for 2 1/2 years Sent from my iPad On May 10, 2011, at 10:07 AM, " kristinz4 " <kristin-smith@...> wrote: > 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 What state: California Children: tristen 6 (cvid) diagnosed Aug 2009 Kaitlyn 9 ( healthy) Doing subq for 2 1/2 years Sent from my iPad On May 10, 2011, at 10:07 AM, " kristinz4 " <kristin-smith@...> wrote: > 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 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 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 What State do you live in? Texas What is your child(ren)'s age and diagnosis? & Payton (twins) age 7 1/2 PID, low IgG Are they using Subq or IVIG? No treatment at this time, monitoring closely. 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 do you live in? Texas What is your child(ren)'s age and diagnosis? & Payton (twins) age 7 1/2 PID, low IgG Are they using Subq or IVIG? No treatment at this time, monitoring closely. Quote Link to comment Share on other sites More sharing options...
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...
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