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Discussion Topic: IVIG
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03-29-2005 @ 10:00 AM
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My son has hypogammmaglobulinenemia . He was diagnosed at the age of 3. He got his IV's every 4 weeks until he reached the age of 20 and was no longer on his father's insurance. He can't keep a job long enough to get insurance because he gets sick all the time. Employers don't understand. We are applying for disability for the 3rd time. If he is excepted they told us that it would be 2 yrs before he gets medical. His Dr. says it is fatal if he doesn't get his IV's. He is 24 now and hasn't had them for 4 yrs. I'm just wondering if you know what we can do to get them. If he is turned down for disability I have no idea what to do and I'm very worried. I just want to know if anyone has any suggestions. Please e-mail me at Jayne.Schaben@ops.org
This message was updated on 4-1-05 @ 9:43 AM
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03-31-2005 @ 12:14 PM
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I just wanted to talk about the home infusions. My son has CVID and has been getting his infusions at the hospital clinic since March of 2004. In January, we started getting his infusions at home, using an agency that specializes in home infusions of many types. We love it. It is great to be at home, we do the infusions every 4th Friday after dinner, the infusion lasts about 3-4 hours and then my son goes right to bed. We have found that it eliminates some of the fatigue, headaches, and nausea he was getting before. There are many agencies that do this. Check on-line for your area. All you need is the written order from the doctor and insurance that covers it at home. Good luck!
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04-05-2005 @ 10:55 PM
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With home infusion either you, someone you know, or a nurse starts the IV. If you opt for a nurse, she may just stay to start the IV or for the whole infusion. I've been doing home IVs for almost 17 years and get my medication and supplies from Caremark. Caremark has a website. The number for the Northbrook, IL office is 1-800-6813
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06-11-2005 @ 11:43 AM
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My son is 3 and he has been getting IVIG since Nov and it has been a godsend. The worse part for us has been finding a vein but he had a port put in in Jan and it has been smooth sailing since. Now he has had a few infections since but nearly the number he had before. Personally I LOVE IVIG. It has made my sons life a lot healthier.
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05-23-2008 @ 12:48 PM
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There are many great home care companies out there. In the New England area you could try contacting T. L. Connections at 978-858-0221 to learn more about how IVIG is given at home. For anyone going to college you can also receive your infusions right at school.
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11-10-2008 @ 7:55 PM
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My daughter who is now 3 1/2 yrs. old was sick ALL the time. She just started the IVIG infusions in May and has not had to be on an antibiotic since. She had not been able to be off from antibiotics until she started the IVIG. We just started doing the Sub Q infusions 3 weeks ago at home. She was getting really bad side effects from the IVIG. So far she has not gotten any with the sub q. So, yes the IVIG infusions work!!!
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01-06-2009 @ 10:08 AM
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what kind of side effects did she get from IVIG
I am also researching this option for my 9 year old.
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01-11-2010 @ 2:12 PM
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My daughter would get Asceptic Menengitis (swelling of the brain).It was like a migraine, but much worse and would make her vomit. She also had bone pain. We did do the preventative IV Benadryl and Tylenol as well. Our Hematologist thought she might do better with doing SCIG weekly. If you have any questions, feel free to ask away. We've been doing SCIG now for over a year.
Take care,
Brandy
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