I've been on IVig for over 25 years and have teenagers with CVID.
First question, there is no treatment for IgA deficiency. It is far more common than IgG deficiency, but none of the products have enough IgA to improve it. Many people with only IgA deficiency do well with no therapy at all.
Regarding an IHP, to be honest I've never heard of one. To my knowledge it has no legal standing under the Federal Law.
Do you mean an IEP? Our kids qualify for them under the other health criteria. I recommend them. A kid does not have to be educationally behind for challenged to qualify.
I would highly recommend you contract the Immune Deficiency Foundation. They have a very active forum and a special section for parents of kids with a primary immune disease. They also have a annual meeting that draws well over 1000 people and have kids programs so kids can learn about their condition and interact with other kids who are similarly effected. They also publish many useful books; a guide for school, a book about the immune system for kids and an excellent patient guide. They are all free, just call and ask for them.
You'll need to google to get the website
Good luck, the diagnosis is far from the end of the world. In the latest research published by the IDF, over 60% of PIDD patients rated their health as excellent or very good. The good news for you is that your kidlet was diagnosed early enough that he hasn't suffered any long term side effects.
My kids have done very well with the condition. My daughter attends an Ivy League university and my son was the president of his college student body last year.
Philadelphia has two of the best physicians in the world who specialize in primary immune diseases. They are at CHOP. I'll be glad to share their names if you want.
Lastly, I highly recommend you look into getting your kids infusions at home. It is far more convenient and less stressful. You will need to do the first few in an infusion center, but after those you doc should allow you to get them at home. For one, they are at least 75% less expensive, at least in our experience.
Good luck - feel free to contact me if you need more information.
Originally Posted by triplets4me
We are taking my 11year old son to get his first IVIG tomorrow morning. He was diagnosed with CVID 2 days before Christmas. His levels are 227 for IgG and basically 0 for IgA, IgE and IgM. He had several bouts of pneumonia 2 years ago and in the past 6 months has been dealing with constant coughing and sinus infections. We are grateful to finally have a diagnosis, but really nervous about what is to come.
Does the IVIG help at all with non-existent IgA? I'm really worried about him continuing to have issues with sinus infections and pneumonia.
Also, any thoughts on what we could reasonably ask his school to include in an IHP (individual health plan)? I spoke with the nurse and principal today and they are very receptive to help in any way they can.
Thanks so much for your help. I'm desperate to connect with others who understand this condition and can relate to what we are dealing with. Anyone we've told has never heard of it which a very isolating feeling.
Thanks in advance!!