Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 I don't know anything-just wanted to send my prayers! ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 I don't know anything-just wanted to send my prayers! ~Pattie~ " What matters is not great deeds, but great love. " ~ St. Therese of Lisieux Family website: www.shwachman.50megs.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 - I don't have any answers and am sending healing wishes your way. If there is anything to learn from Lyme disease, and how " lessons learned " might relate to your kiddos's circumstances, you might want to google Lyme and IVIG. I have heard of some using IVIG for chronic lyme (that is resistant to antibiotics, perhaps due to unknown immune system vulnerabilities). I realize your son does not have lyme -- but treatment might be similar. I don't know... Prayers, mom to CVIDer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Thank you for the thoughts and prayers! , I wondered about using IVIG for this, we are still in the wait-and-see mode at the moment. Hayden does seem to be getting worse as time goes on, but he's only gotten a few doses of doxycycline on board. We are giving it another 12 hours and if he's still not getting better he's going back to the hospital. Thankfully the other kids are healthy at the moment! Take care, Mom to Conner (12, combined immune deficiency ?, lymphadenopathy, asthma, Hashimoto's disease and resolved adrenal insufficiency), Hayden (12, unknown PID, IBS and moderate hearing loss/aided), Evan (12, unknown PID, asthma and mild hearing loss/unaided), and Kelsey - (10, unknown PID and asthma) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
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