Low IgG without replacement therapy

[kayeg91]

My son was diagnosed with PID when he was 10.  He is now 14.  He had lots of infections when he was younger but they have slowed down now.  He usually has one bad one a year that puts him in the hospital.  He has a sore on his knee that won't heel; it looks pretty bad.  He has severe fatigue and sleeps about 14 hours a day.  His IgG level is 450.  We have been in limbo for 4 years.  I know anyone who has to go through with therapy would trade places with us since we don't need the therapy.  I can tell you this is very hard.  We still struggle with the same illnesses but there isn't a support group for people like us and I don't know where we are headed in life.  Can someone please offer support and/or advice?  Thanks

[gillie]

Hello and welcome. I'm so sorry that you're in such a bad place having to deal with the consequences of your son's PID. Even though part of his fatigue will be what every teenager suffers at around this age,[and longer!] this amount of sleep does seem extreme. I'm not clear where you are, but my guess is that you're in America.In the U.K. I think that your son would be monitored on a regular basis having been diagnosed with PID.I certainly don't like the sound of a wound which won't heal.Has it been seen by a doctor who knows about his immune deficiency? As a mother, I'd be worried about him picking up a worse infection through lack of treatment. The lack of IgA which is a common part of immune deficiency means that he doesn't have what I think of as the body's first line of defence against infection. I have no medical training so I'm really putting down thoughts based on my own experience with PID , and I want you to know that someone has read your post and thought about your situation. Hopefully, you'll get more help and advice from people much better qualified to help you than me.
My best wishes to you and your son.
Gillie.

[Deleted]

Hello, my name is Melissa and I am what you might call a vet CVID patient, not that it was diagnosed as CVID many moons ago. I am happy to share my experiences with you as someone who has gone on and off replacement therapy a couple of times and am now coping without for some time. Again, like Gillie has said, I am not a healthcare practitioner and I know I will not solve anything but I can make some health-related suggestions or offer some support by letting you know that quality of life is still very attainable for your son.

Melissa

[mothergoose]

How is your son doing now that school is back in.

I was treated with prophylactic's antibiotic's for quite a few years before I went on IgG, as far as I am concerned that was a waste of time, I just got sicker and sicker till they couldn't say I would get better.

I hope you son stays at one bad infection per year, that is at least manageable.

His sleeping so much could be a combo of have hypogammglobumina and an on going infection in the knee.