Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Welcome Melinda! Reading your post made me feel like I was talking about my daughter who is now 16. Hang in there you will learn a lot from everyone and remember we all just take one day at a time! Lorri ( , CVID, Asthma, 16 years old) New Here - My Intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Welcome Melinda! Reading your post made me feel like I was talking about my daughter who is now 16. Hang in there you will learn a lot from everyone and remember we all just take one day at a time! Lorri ( , CVID, Asthma, 16 years old) New Here - My Intro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 > > I am here because of Connor. He does not have a firm diagnosis at this > time. He is diagnosed with hypogammaglobulinemia We have several new members and I want to welcome everyone. As a first step, if you have not yet, please call the Immune Deficiency Foundation and ask for their Patient and Family Handbook. That number is 1-800-296-4433 and the book is free to you. It will help you to start your education about Immune Deficiencies. The purpose of this group is not to provide medical advice -- but often this group provides a sounding board to you so that you can make sure your child is getting the absolute best in medical care. My suggestion is that if you see something here -- discuss it with your doctor. So, Melinda, may I ask, what tests have been done on Connor that give him the diagnosis of hypogam and why do the doctors think it might be THI? The reason I ask is that THI is generally considered outgrown at age 2. Now, we have patients who outgrow their immune deficiencies at later ages -- but it's not generally labeled THI. That makes me just a little bit suspicious of your doctor's understanding of PID. That said -- let me back up to say that most pediatricians have never seen a case of PID. Even Katy's first immunologist had only seen 1 case of PID. It is rare. Knowledge is increasing, thanks to IDF and other organizations, but many, many doctors do not have a clue as to how to properly diagnose or treat PID and there's a lot of bad advice out there. So..... ask questions, get informed, seek immunologists who do see PID patients, and get your child on the road to health! The danger of delay in treatment is scarring of the sinuses, lung and gut from repeated infections. You say that Conner is doing well right now. That's great news. But do you know if he is protected? Have they checked his titers to his vaccinations? Did he build protective antibodies? These are important questions to ask. Best wishes and I do hope that Connor continues to improve and become totally healthy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 > > These are important questions to ask. Best wishes and I do hope that > Connor continues to improve and become totally healthy! > My apologies to the group -- I hit the send button and didn't sign! I'm dale! Quote Link to comment Share on other sites More sharing options...
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