CVID

Posted by Jhrbts @jhrbts, Dec 13, 2011

My son (11 years old) has been diagnosed with CVID. We are currently trying profilac antibiotics to keep him healthy. Is ther anything else we can do to keep him healthy? Diet, Vitamins, etc.? We have not started the IVs and are trying to put them off as long as pocssible.

Thank you

what is this

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In reply to @deliasanderson "what is this" + (show)
@deliasanderson

what is this

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CVID is short for Common Variable Immune Deficiency

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a friend of mine who kept getting sick went on a blood diet. according to one’s blood type, there are certain types of food recommended and certain foods to abstain from. she feels great now and is never sick.

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I am 43 and my CVID developed about 3-4 years ago. My sister is 38 and also has been diagnosed. First – I am so sorry that your son has been diagnosed with it as well. I in no way want to give you medical advice, but offer our experiences in dealing with the the disease.

First – read all you can about it. One thing I found out was that most doctors (other than immunologists) do not have a very good understanding of the disease. For me, if I get sick or some sort of infection it needs to be treated aggressively. I had more than one occasion where I saw a doctor when I was sick and was basically told to take to Motrin and call him if it got worse. When I asked about prophylactic antibiotics, I got the antibiotics don’t kill viruses, building resistant bugs speech only to wind up in the ER a few days later with a severe secondary infection. If I do have some sort of infection, I ask for everything to be cultured immediately if possible… So if the doctors first round of treatment doesn’t work, hopefully the culture will show which antibiotic will be the most effective. This step is skipped (and maybe not warranted for people with normal immune systems) more often than not as you will see some doctors throw the proverbial Z-PAC at any sort of upper respiratory infection. Also, make sure you are informed on what possible treatment options are available. You will often see doctors prescribe lower cost but possibly less effective drug at an infection reserving the bigger guns for recurrent more resistant infections. (Don’t get me wrong, these are prudent, cost effective, and medically correct treatments when doctors are dealing with people with normal immune systems). With a compromised immune system, I am looking for the most effective drug possible regardless of the cost.

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Second – (Had to break this into 2 posts) Make sure you document everything. That includes every cold, sniffle, infected cut, etc. Even if it is just a call to your physician to document it. If you do down the road decide to do IVIG infusions, don’t be surprised if your insurance company declines the treatment. The more documentation you have, the better odds you will get the treatment your doctor recommends in a timely manner.

Third – IVIG infusions vs. antibiotics. This one is tough because there is no right answer and there are risks to both. I did prophylactic antibiotics in the beginning. While it cut down on my infections, I still got a couple bad ones that the antibiotic I was on didn’t cover. But I spent 4 of the worst months of my life this year that were taking long term antibiotics greatly contributed to…. Oral Thrush – a fungal infection that normally only babies get but people with immune disorders can also get. The broad spectrum antibiotic destroyed the good bacteria in my mouth that normally helps to keep the fungus at bay. Thrush is torturous. My mouth constantly felt like it was on fire and I had to be on severely strong, large doses of antifunguls. My liver and kidneys are still recovering… hopefully they will all the way.

I now do the IVIG infusions and am grateful for them. I now rarely get sick… when I do, it doesn’t seem to help with the duration of the disease or infection, but I’ve only had one where I probably had 7-8 last year. I haven’t had that bad of reaction to them, it’s like going and getting an IV for about 4 hours once a month…. but some people it is a lot worse.

I have found that eating right, exercising, etc. (all the stuff we should be doing anyway) really does help. Just something I pay a lot more attention to now.

Hope this helps… good luck and let me know if you have any other specific questions.

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@lotsostufffailing

Second – (Had to break this into 2 posts) Make sure you document everything. That includes every cold, sniffle, infected cut, etc. Even if it is just a call to your physician to document it. If you do down the road decide to do IVIG infusions, don’t be surprised if your insurance company declines the treatment. The more documentation you have, the better odds you will get the treatment your doctor recommends in a timely manner.

Third – IVIG infusions vs. antibiotics. This one is tough because there is no right answer and there are risks to both. I did prophylactic antibiotics in the beginning. While it cut down on my infections, I still got a couple bad ones that the antibiotic I was on didn’t cover. But I spent 4 of the worst months of my life this year that were taking long term antibiotics greatly contributed to…. Oral Thrush – a fungal infection that normally only babies get but people with immune disorders can also get. The broad spectrum antibiotic destroyed the good bacteria in my mouth that normally helps to keep the fungus at bay. Thrush is torturous. My mouth constantly felt like it was on fire and I had to be on severely strong, large doses of antifunguls. My liver and kidneys are still recovering… hopefully they will all the way.

I now do the IVIG infusions and am grateful for them. I now rarely get sick… when I do, it doesn’t seem to help with the duration of the disease or infection, but I’ve only had one where I probably had 7-8 last year. I haven’t had that bad of reaction to them, it’s like going and getting an IV for about 4 hours once a month…. but some people it is a lot worse.

I have found that eating right, exercising, etc. (all the stuff we should be doing anyway) really does help. Just something I pay a lot more attention to now.

Hope this helps… good luck and let me know if you have any other specific questions.

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Thank you very very much for your reply!!!!!. You have very good advice and you have confirmed what I have learned. We are at the point of long term antibiotics. My son takes these for the entire school year. We started this during August, just before school started. He has done better this year, but we are experimenting this year. Our next step is IVIG. He is just completing a 30 day round of antibiotics because he got a sinus infection. This is the only time he has been really sick for awhile. We now go back on the long term antibiotics. Before we went on the long term antibiotics, he was basically sick for the entire school year. I am documenting everything and have had the same experience with his doctors as you have had. We have identified some doctors however who do understand my son’s condition. However, it took us until he was 8 to find the doctors to determine his condition. Documentating everything has also helped me learn the warning signs when he is getting sick. Thanks again and good luck. If you leard of any break throughs, please letme know. I will do the same for you. We live in Louisvile, Kentucky and Cincinnati’s Childrens Hospital helped to give us a better diagnosis. Thank you!!!

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@lotsostufffailing

Second – (Had to break this into 2 posts) Make sure you document everything. That includes every cold, sniffle, infected cut, etc. Even if it is just a call to your physician to document it. If you do down the road decide to do IVIG infusions, don’t be surprised if your insurance company declines the treatment. The more documentation you have, the better odds you will get the treatment your doctor recommends in a timely manner.

Third – IVIG infusions vs. antibiotics. This one is tough because there is no right answer and there are risks to both. I did prophylactic antibiotics in the beginning. While it cut down on my infections, I still got a couple bad ones that the antibiotic I was on didn’t cover. But I spent 4 of the worst months of my life this year that were taking long term antibiotics greatly contributed to…. Oral Thrush – a fungal infection that normally only babies get but people with immune disorders can also get. The broad spectrum antibiotic destroyed the good bacteria in my mouth that normally helps to keep the fungus at bay. Thrush is torturous. My mouth constantly felt like it was on fire and I had to be on severely strong, large doses of antifunguls. My liver and kidneys are still recovering… hopefully they will all the way.

I now do the IVIG infusions and am grateful for them. I now rarely get sick… when I do, it doesn’t seem to help with the duration of the disease or infection, but I’ve only had one where I probably had 7-8 last year. I haven’t had that bad of reaction to them, it’s like going and getting an IV for about 4 hours once a month…. but some people it is a lot worse.

I have found that eating right, exercising, etc. (all the stuff we should be doing anyway) really does help. Just something I pay a lot more attention to now.

Hope this helps… good luck and let me know if you have any other specific questions.

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Hello “jhrbts”… I also have CVID, and infuse immuglobulin at home once weekly. I am so sorry that your son and your family is struggling with this diagnosis and all that is associated with this disorder. Lotsostufailing gave you awesome advice and Information. This disorder becomes even more complicated because most dr.s and our society in whole are not familiar with it. I just wanted to add that there is a wonderful organization called the Immune Deficiency Organization or “IDF”. They are well organized and do a wonderful job both politically for us in Washington as well as education and support for us, our dr,s , friends and family. They have wonderful groups and educational things for our young especially. sometimes this disorder secluded us from daily interaction and or friends, recreation etc. It is 1000 x worse for our young ones to feel isolated, and or different. IDF has wonderful advocacy programs for youth and gatherings, etc. Also check out FB as their are many CVID support groups and I believe at least one is primarily for young CVID patients and parents trying to deal with schools, social and family situations. I wish you, your family and your son the best. If you need further info please do not hesitate to connect. take Care……..

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