Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 I first want to thank those that supported me when I first was asking about parents who were diagnosed after their children with PI. Yesterday, after many lab workups they diagnosed me with CVID. I will be starting IVIG at UCLA on April 6th. They are going to do it in the pediatrics department with my 10 year old son. He keeps reassuring me that he will hold my hand when they start the IV (I am not a lover of needles). Thanks again for the information and support I received from the members of this board when I first started the testing awhile back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Dayna, Hi there! Ian actually almost made the entire 3 weeks without a missed day of school. On Monday before his Wed. IVIG he had the side effects (migraine, nausea, and severe muscle pains). We almost make it though. He had a terrible reaction after IVIG this time. It was almost as bad as the first time with the other medication. I sortof expected it because he had a rough time during the infusion. Thankfully, he was better by morning time with prednisone, oxygen, benadryl and Alleve. Dr. 's has asked us to consider Ian for a new study on a medication that supposedly is suppose to have fewer side effects. They have already done the study in the UK and it was successful. After the problems we had, I think we have decided to do it. I am glad to at least have a diagnosis for myself. At least it gives my illnesses a name. I am sure I will be fine. Thanks for the note. Have a great day! How are your little pumpkins doing? > > - > > What a happy, yet sad post. First, I'm thrilled you have answers. > Second, I'm so glad UCLA is going to give you IVIG - I can totally see > this as being such a step in the right direction for you! Third, I'm > sad that you have to deal with anything at all - it would be much easier > to have nothing additional on your plate. I do have to say, I'm very > hopeful for you - as you well know, your in such wonderful hands at UCLA > - I can only see this leading in a positive direction. Please keep us > updated. > > How is Ian doing? > > Dayna > > CVID Diagnosis > > I first want to thank those that supported me when I first was asking > about parents who were diagnosed after their children with PI. > Yesterday, after many lab workups they diagnosed me with CVID. I will > be starting IVIG at UCLA on April 6th. They are going to do it in the > pediatrics department with my 10 year old son. He keeps reassuring me > that he will hold my hand when they start the IV (I am not a lover of > needles). > > Thanks again for the information and support I received from the > members of this board when I first started the testing awhile back. > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with > a Primary Immune Deficiency. Opinions or medical advice stated here are > the sole responsibility of the poster and should not be taken as > professional advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 I was also recently diagnosed and am starting my 1st treatment in April. My son has been receiving it for two years and now they are tedting my 10 year old. Dawn Schulman <dietdoc@...> wrote: Hi, . At last, you have a diagnosis and will get the treatment that you need. I hope all goes smoothly on the 6th. You are in great hands at UCLA. And, don't hesitate to solicit experiences with SCIG when you are stable and ready to consider. Just wondering...does your lab profile match your son's or was there something different that led the docs to CVID? Best wishes to you and Ian, Your neighbor, (mom to CVIDer) ianrileysfamily <_Riley@...> wrote: I first want to thank those that supported me when I first was asking about parents who were diagnosed after their children with PI. Yesterday, after many lab workups they diagnosed me with CVID. I will be starting IVIG at UCLA on April 6th. They are going to do it in the pediatrics department with my 10 year old son. He keeps reassuring me that he will hold my hand when they start the IV (I am not a lover of needles). Thanks again for the information and support I received from the members of this board when I first started the testing awhile back. This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.