My son is 7 years old. He has been sick his whole life. Hospitialized 147+ times and more surgerys and procedures then I can count. It took 6 years of fighting doctors and hospitals, being called crazy and everthing else to finally get a diagnoses. 1 day after spending his 6th B-day in the hospital the new doctors sat us down and told us that Josh has CVID. It was the happiest yet scariest moment of our lives. We were not crazy and all our fighting the profesionals was not for nothing. On the other hand, oh my god my baby is sick. It's been over a year since the diagnosis, and Josh has a port and gets IVIG every three weeks. For 6 months out of the year he goes on IV antibiotics. He has constant and chronic lung and sinus infections. He can have no vaccines because he contracts the diseease He is allergic to a ton of meds. It has been a hard road and lonley. No one understands what we go thru. I am scared to let him out of the house because it is the world that is dangerous to my son all those germs. I don't want to isolate him because what kind of life is that. In 4 days we go to walt disney world for Josh's Make A Wish. I hope every thing goes well. We me and my husband just need to talk to people who understand. I am looking for support please help me. I am scared to loose my son.
Erin

I know exactly how you feel. My husband was just diagnosed with CVID last year. He has had it his whole life and was very sick when he was a child. It took the Dr.'s over 9 years to figure it out, we started running test after test after test 9 years ago. My husband almost died of phuenomia 3 years ago. They kept trying to figure out why he had phuenomia of an 80 year old man. It was horrible.
I have a question for you- are you working with an actual Immunologist? If not you NEED to? My husband's Dr is telling us to stay away from ports because they are prone to infections! Please feel free to email me at cmckay74@clearwire.net. I would be happy to talk to you so that you don't feel alone. I understand how it feels to have a loved one with this and having to someone to talk to about it helps greatly!
Charlene

Hang in there as I am 33 and my Mother told me just recently that she didn't know if I would have lived to be 33 when I was younger as I was like your son. The antibiotics over the years and my immune system started battling each other. I was not allowed to go outside for recess from K-12 because I would either get a rash or sick from something outside. My life as a child and even as an adult was not the best as I was always sick. I was out of school constantly and some how managed to graduate college even if it meant I only took two classes a semester and that my professors worked with my doctors to keep my work up. Some days I was too sick and tired to drive to college so my Mother would go with me. My professors were made aware of my health restrictions and let me take tests and turn in projects when I was well. My doctors recently said that my chronic infections could have been caused by an abundance of yeast from all of the antibiotics. I had become immune to ever antibiotic children are on and now cannot take penicillian as my body reacts with terrible rashes. Read up on yeast as it breaks the body down like crazy.

These past wo years, my health was failing me. I could not work and was practically bed ridden as my immune system was shutting down. I had unexplained mysterious rashes, thrush, kidney issues, you name it, I had it. A new team of doctors I found (it was totally a God thing) finally had me do a cleanse and rid my body of any antibiotics and yeast that might be present. I starting taking acidolphilous daily in chewable form (must keep refrigerated) stopped eating sugar and breads and drank aloe vera juice daily. I believe it was a two week cleanse from Whole Foods Market that I did. I also drank daily cleansing teas to help flush out the toxins and antibiotics that were in my system. I stopped eating cheese and focused on vegatables and Odwalla health drinks. I did everything I could to eat non yeasty foods and increased my fiber intake to flush out my body.

My doctor suggested having my ears candling as it asorbes all of the ear wax/infections and I do this now 3 x a year now. I also learned this year that I have an IGG 1 subclass defiency (my Mom was in tears of joy as was my specialist) and just finished my 5th infusion treatment on Monday. I can say now that within these past several months, I have not been on one antibiotic and haven't been to the doctor for sickness. I can play outside and sit in the grass and read a book. I now own a pair of hiking boots and go outdoors in the woods and do not break out with any rashes or need my asthma medication. I have now been taken off of my daily asthma medication, daily allergy medication, and love life. I still keep up the healthy living and try hard to restrict sugar. I eat a vegetarian diet with whole grains, natural peanut butter, veggies, etc. I also started my own company this year and travel like crazy. My doctor this last visit ran my blood work and said that my levels are of that of a healthy person and we are keeping on with the IVIG infusions on a monthly basis.

I tell you all of this as there is hope. Once I finally placed my health in God's hands and asked for patience every day as he unfolded what His plan was for my health, it finally happened. Last July I couldn't breath and learned that my lung capacity had dropped to 55% and my health was started to truly fail me. I realized that my liver, kidney, lung, heart, etc were not mine and that I needed help more than the doctors at the time could provide. I started praying and prayed like crazy. Within 2 months, I started to be able to breath a little better and my coloring was improving. I went back to the doctor and he said that it was a miracle that my lung capcity was at 93%. He referred me then to the specialist who diagnosed me with the defiency and the more I prayed and found doctors who were strong believers, the better I improved. All I can tell you is to keep strong and pray if you can. I thank you know who every morning and every night for the gift I have been given. I have a new chance at life and am thankful as is my family.
I will keep you and your son in my prayers.

erinsid2,
You are not alone. We had the same things with Shelbie. She still has sinus problems, usually four surgeries a year. Last one the Tuesday after Thanksgiving. She had all her baby shots...none stayed. She has IVIG every four weeks, takes pre-meds to prevent reaction, doesn't have all the respitory problems she used to have. She had the surgery for acid reflux, said its the best thing she ever did, no more reflux. It also corrected her intestional problems. She is allergic to all antilbiotics except Cipro. She is allergic to almost everything outside, cigarette, dairy, fish, her own tears, her own blood, has a missing allergy that pops out in hives periodically, has osteo pena [brittle bones], fibromyalgia, arthritis and I could go on and on but she fights all the way. She is 13, beautiful, honor roll student, even missing 40 days a school term, knows her activities are very limited:had to quit gymnastics, horse back riding, cheerleading, dance, can't ride her bike or skate, can't take gym, can't even run anymore but she loves life and will not give up. She is my hero and my angel. Your child can have a good life, Shelbie does, I wonder if I could live like that. Do not give up!!

Just wanted to let you know that as soon as I read your subject line I felt the need to post something - because for a long time I also felt the same way - but as time goes by I realize that the search for knowledge- answers and support is so necessary. My son is now 11 and was diagnosed at age 7 - I cried when we got his diagnosis of CVID because finally there was something concrete as opposed to chronic illness, hospitalization - you name it. We still feel alone - especially when he is sick.. We have IVIG infusions every three weeks - and he is premedicated prior to and following infusions - for side effects such as vomiting - rash - major headache. Also he has just been diagnosed with an adrenal insufficiency - wondering if anyone else has this diagnosis in conjunction with the CVID? Liam plays hockey, ball and is an excellent student - even when missing over 42 days of school on average per year. So good to be able to read about others and be part of something!

Shelbie no longer goes to the hospital for IVIG. She is now doing SubQ at home once a week and loves it. This way her gamma levels are kept level and, hopefully, her body will start to heal faster. This is one thing that makes her life a little better. She deserves to live a good life, everyone with CVID deserves a good life. Shelbie just has so many things wrong with her besides CVID but she goes on.

Please look up Immune Deficiency Foundation Organization

idf.org

You are not alone. It sounds like your son's IVIG dose may need to be increased either in amount or frequency...or both. IVIG should be given to maintain optimum level of health. Sounds like he isn't getting enough if he is still getting sick. Some physicians are scared of dosing but if he is going to take it...he needs to take enough to be worthwhile.

I think you mean to go to primanyimmune.org. Idf.org is the The International Diabetes Federation (IDF) a global advocate for people with diabetes.