Monday, April 4, 2011
April 4, 20
It's been a long time since I have posted but Jacob has been doing very well. He has a few infections but nothing severe and most importantly we have been able to stay out of the hospital since June! His asthma been flaring up a little more than usual lately but with a few tweeks to his mediction and it appears to have gotten under control. His migraine headaches have finally started to subside. He was getting full migraines atleast once a week with all the classic symptoms. rough on anyone but especially a 7 year old. His doctor has drastically slowed down his infusion from 45 minutes to 2 hours. In the beginning we had very little change in the headaches but in the last 6 months they have started coming less and less. Also, a huge step this year is we finally (so far) have not gotten the flu OR RSV. I monitored the flu outbreak and held off on the flu shot until as late in the season as possible, since everyother year he had lost all his titers to the shot and got the flu in Feb. every year since he's been born. In June we go to the IDF seminar and I hope to have a lot more knowledge about the disease my son has.
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My name is Brittany. I ran into your blog while I was looking up information about CVID on google. I was diagnosed when I was 18, almost 4 years ago now. I started on IV therapy and a year and a half ago I switched to Vivaglobin which has now switched to Hizentra. Over the years I have had my ups and downs. I've never reacted well to the infusions. I tend to get large hard masses on my skin and even though I have been doing them for a long time I am still doing 33 ml over 2.5 hours. I originally found out I had the disease because my immune system attacked itself leaving me with a secondary disease called lymphoid hyperplasia (small benign growths) in my intestinal tract. I have around 200-250 benign tumors that are permanent. Recently I have had a lot of trouble breathing as well. I am sorry you son has to deal with this at such a young age and if you ever have any questions feel free to email me at blblue@rams.colostate.edu. I hope you and your son the best of luck!
ReplyDeleteMy name is Becky and I have CVID. Ive been recieving infusions for 9 yrs now but only the past month Ive been getting Hizentra . My 14 yo daughter has it too. There is a site on Facebook called Down with PIDD ya you know me that has a bunch of ppl just like us. Its a wonderful group and filled with ppl of all walks of life. Im sure you can find someone there to understand you issues. I hope your either already in the group or are going to check it out!
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