Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 In a message dated 6/14/2004 11:42:45 PM Eastern Daylight Time, dale@... writes: I missed you guys! You were very missed too. Glad you had a good vacation. Congrats on your son's college graduation! My son just graduated from high school. I cried, of course. He is going to a local college for 2 years so he will be staying home with us. Then he will be leaving to finish college. My they grow up too fast. Brittany goes for her second IVIG tom. Pray it goes well for her, please. The first one went very well. I can't wait to see if they help her. I know it takes a while. She is on Carimune. Glad to have you back!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 In a message dated 6/15/2004 4:35:12 PM Eastern Daylight Time, BBsmart2@... writes: Janet, mom to Brittany, CVID, age 13 Hi, forgot to tell you I bet you are glad that Katy is coming home for a while. I sure hope she feels better. The comment about the wisdom teeth makes sense. Let us know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 from Dale, Mom to Katy, CVID, age 20 , I had just read your post that stated that you will be going back to immunology -- and that you had not been in 2 1/2 years. There has been so many changes in the past 2 1/2 years in the research! Even though you don't have daily records -- just showing them how many times she's needed antibiotics and just the fact that she doesn't have protection from pneumococcals make me feel that she is possibibly a candidate for IVIG. But, I also want to really, really caution you about using someone that is not up on the latest, greatest! You've been on this list long enough to know that there are immunologist and there are allergist who put immunology in their title because they took classes once upon a time. If I was going to subject my precious little one to someone taking mega vials of blood -- I would want to know that he/she is going to give me the best possible work up. No one told me that it was okay to walk out of a doctor's office and never come back -- I was that naive before Katy got me educated! Follow your heart and get her the best possible work-up. Were you comfortable working with this Immunologist before? Did he/she listen to you and your questions? If there's anything that makes you feel uncomfortable about this immunologist -- don't go! Find a new one! Just my suggestion -- follow your Mommy instincts. You know what is best for . Glad to hear the ear has healed! In His service, Dale bunneegirl@... wrote: >Oh, Dale, I didn't read your e-mail until just now, when I got back from the >doc and had already asked for a referral back to immunology!!! How >interesting. Perhaps I was guided to the decision even without having read your message >yet! (your prayers got through!) > >Thank you so much for your concern and your prayers -- they mean the world to >me. > > (mom to Kate, born 9/19/02, dairy intolerant; and , age 5, GERD, >dairy intolerant -- currently has polysaccharide antibody def, previously had >transient IgG, IgA, t-cell & other defs) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 In a message dated 10/5/2004 1:28:27 AM Eastern Daylight Time, dale@... writes: SO. I haven't seen her since the end of August and she reports that she is not having ANY side effects with Gamunex -- not even the 2 days of flu-like stuff she's had for years with Gammimune. AND (she ought to do another Bayer commercial) she feels better and less sick than she's felt since before she was diagnosed. I've got to write Bayer a BIG thank you. Dale, This is great news. I am so happy for Katy!! This just convinces me to BEG once again for a change in product for Brittany!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 In a message dated 10/5/2004 1:28:27 AM Eastern Daylight Time, dale@... writes: SO. I haven't seen her since the end of August and she reports that she is not having ANY side effects with Gamunex -- not even the 2 days of flu-like stuff she's had for years with Gammimune. AND (she ought to do another Bayer commercial) she feels better and less sick than she's felt since before she was diagnosed. I've got to write Bayer a BIG thank you. Dale, This is great news. I am so happy for Katy!! This just convinces me to BEG once again for a change in product for Brittany!! Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 I'm glad to hear your daughter is feeling better and you've found a treatment that seems to be working well for her. Let's hope it stays this way for her for a good long time. /Dayann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 In a message dated 2/22/2005 4:02:07 PM Eastern Standard Time, dale@... writes: While her major problems didn't develop until age 11 -- we can look back and see earlier problems -- unexplained rashes, low weight, etc. but the major problems did not start until 11 and then hit with a vengence! This is Brittany exactly!! Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Dale I've noticed the difference between a parasite and a stomach virus is the smell of the vomit and/or diarhea. A parasite infection has a down right raunchy (southern word there) odor to it. Plus when Macey has had those infections she has more stomach cramping than a virus. Just our experience. Ursula Holleman mom to (12 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 from Dale, Mom to Katy, CVID, age 20 On prematurity -- Katy was 2 days past due date. Weighed in at 7'11 " and was as far as we know totally healthy! While her major problems didn't develop until age 11 -- we can look back and see earlier problems -- unexplained rashes, low weight, etc. but the major problems did not start until 11 and then hit with a vengence! I just got back from spending the weekend with Katy. She's got a stomach bug that is being very nasty -- can't seem to progress past the liquid diet. She's very reluctant to do stool studies, but I'm beginning to wonder if it's parasite instead of bug. I'm feeling very rusty and if anyone can give me reminders of how to tell the difference between the two I'd appreciate it. About the Disney Conference -- Katy will be attending, but I will not this time. Last conference we all wore green ribbons on our name tags so that we could locate each other. So take some green yarn or fabric and add to your name badge so you can find each other. And if any of you need a roommate, Katy is trying to find a person to share her hotel room. Best wishes to all, In His service, Dale Quote Link to comment Share on other sites More sharing options...
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