Hi Heidi:) I'm newly diagnosed too. I understand your fears though mine are the opposite....I pray every day that my son doesn't have this disease. I will take on whatever pain and struggle as long as he doesn't have to go through a chronic illness such as this. I still haven't found my answer. It's been almost a year with chronic sinusitis and 11 different antibiotics w/ surgery. Still battling to feel better and clear this mess up;) also just started Hyquvia last month and am almost done ramping up to my full 40g. Everyday I have with my son is the greatest!! Believe me I understand your fears but opposite. Hugs sent and well wishes made. Support is here!!!

Did your mom ever have you tested as a child? How old are you now? What are your symptoms? The info on here has been priceless to me so far. I need all of the support, understanding and education I can get;)

Hi Misty-Oh, as a mom of two daughters (23 and 18), I can imagine how worried you must be that your son might have CVID. Sounds like the past year has been really rough on you!
I was never tested as a child, my mom wasn't diagnosed until she was
53, and i am now 50, so, I guess it's a late onset thing in my family.

I did have lots of infections when I was little, and have had a ton of
sinus, bronchitis, pneumonia infections. I have been so busy taking care of my mom, and my daughter who has Crohn's, that I have not
even thought that I might have what mom had.

What kind of surgery did you have?

I had FESS sinus surgery in June. Unfortunately I still have lots of thick yellow nasal congestion and mucus so the infectious disease doc I was referred to doesn't think infection is gone. Had to get a picc line about 10 days ago and another 14 days of IV antibiotics was ordered yesterday. This would be my 12th round of antiobiotics since March. I have a different story.... I think I had typical illnesses as a kid, was pretty healthy until the last year or so. I had pneumonia then caught whooping cough and now this sinus issue. It was actually a mistake that they caught CVID- the hospital preformed the wrong test. Must have been an angel watching over me:) have you started any treatment yet? Do your girls show any symptoms of CVID?

So sorry about the Chrons disease. How is your daughter currently?

Oh my gosh, you are going through it. Thank goodness they found your CVID, when one door shuts...I haven't had any treatment yet. My daughter just has resection surgery for her Crohn's and I was so sick while she was in the hospital- I took 3 different anibiotics and none of them worked. Finally my primary care doc sent me to the immunologist- and he checked my titers right away b/c of my family history. Today I feel chilled to the bone, and hope I'm not getting sick again. We're leaving to take my daughter to college in a few days, and I feel like she's gotten the raw end of the stick from me lately.

My daughter is well- feels great! She is on Humira, which is a bit scary, but has put her into a remission for now.

I just looked up Humara and its Subq. I do my treatments subq too, at home which is very nice. I'm sending her prayers that her treatments go well and she has no adverse side effects from her meds. That is so hard as a mama. I also pray that you are well enough to get her off to college. What a great step!!!! College is a blast:) Strange thing about the Titers is I had the pneumovac last September and when they drew my blood I was still protected which was months later BUT I had contracted pertussis...hmmmm. Due to the history and my low IGg (300) and low IGm I was diagnosed with CVID and insurance covered my treatments. Remember this when your teter results come back. Well wishes to you and your daughter ---healing!!

Although CVID is genetic its not necessarily hereditary. I think the statistics are less than 20% of family members inherit it (stats may be smaller I just can't remember off the top of my head). CVID affects us all differently. Being on optimal treatment to help prevent infections is super important but that can take some time and tinkering with dose, brand, infusion method and speed. Learn all you can and be your own best advocate.

Hi, I'm also newly Dx'd. You know it's serious when your doc hands you a book and assigns chapters to read, as well as a support group. Ugh. My Rheumy found the immunodeficiency and sent me to Immunology. (I should send him flowers?!) Anyway, my major illnesses were as a teen/young adult. Then they got fewer in-between as I got older. I will be 43 in September. When I get sick, I get sick. I also get frequent skin infections. I have been searching for answers for 4 yrs, so a Dx is bittersweet. I'm nervous for the treatment, but more so, nervous they will find something else wrong when they do the scans. I live with loads of joint pain, and the past 2+ mos have been a major challenge gastrologocally. I can't eat much at one time, and certain food set off all sorts of bad things. I bloat ferociously, and now salt makes my legs turn to tree trunks and lips turn into Angelina Jolie's. (A whole lot less attractive than it sounds) I have major hair thinning (falls out just running my hands through it) and recently my eyebrows are diminishing. I've read the treatment can make hair loss worse, so I'm not looking forward to that. I'm scared, and worried that I've passed this awfulness onto one or more of my sons. My mother has autoimmune issues and had a brain tumor (benign) removed 15 yrs ago. My father has RA and recently finished prostate cancer treatment. It appears I've inherited this garbage. Anyway, if you've had success with curbing some of your symptoms, I'd love to know how. I went gluten free about 3 mos ago, that helped with the chronic fatigue. Other than that, I live on Alwve when the pain is brutal. I haven't started Sjogren's treatment yet. Rheumy is waiting until I start CVID treatment, he didn't want to mess up any labs. The dry eyes are the worst, but the drops I have help. God help you, us, soldier on...sounds like we all have so much going on. Being sick wasn't in my plans. I hate worrying my husband and sons.