Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 I'd be dreaming if Autumn's #'s were close to the 900's. We're still barely 400. I'm so glad 's doing better! We aren't on IVIG, but I don't think it would hurt to try doing infusions every 4 weeks. If it didn't work, you could always go back. Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (11 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Well I have some GREAT news- 's IGG level last week was 954- I'm doing the happy dance. We're considering changing to every 4 weeks rather than 3 weeks- any ideas? In Him, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Ours wanted his between 800-900 also. igg level >I have a question? Is the new per say level 800? My sons doc is happy if >he is at 600 before treatment. he has been sick about the last 2 and a >half months now croup, sinus, eye infection. His levels haven't been to >bad 5-600 before treatment. Are the new recommendations 800? He has been >so cranky lately too...we just saw our immuno and he still wants to keep >it at 4 four for now. We moved from 3 weeks 5 grams to 5 grams at 4 >weeks. He is still off profalactic antibiotics. Although he has taken >antibiotics twice for ten days both times for sinus infection so he hasn't >been off to long now. thanks Dawn mother to cvid, gerd, asthma >developmental delay, torticolis > > > >____________________________________________________ > Sports >Rekindle the Rivalries. Sign up for Fantasy Football >http://football.fantasysports. > > >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > >To unsubscribe -unsubscribegroups (DOT) >To search group archives go to: /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Today we went for IVIG treatment and were told that her liver enzymes are elevated to 272. The range is from 84-200. The nurses fax the results to the doctor and she said the doctor would discuss this with us. Does anyone no what this means? Does her IGG levels affect this? Lorri ( 15 CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 In a message dated 6/20/2005 5:49:21 A.M. Eastern Daylight Time, mwheel03@... writes: We tried this and Hannah was always sick on that third week. I'd say whatever works best is the right thing to do. Most do it 3 weeks but I have heard or 2. I'm wondering if we should go back to four. My daughter is getting sick at the end of her infusion and it is lasting a few days. It didn't do that at 4, but then again they upped her dose due to her weight increase. But at this rate she is going to lose it AGAIN because she is sick from the IVIG now! GRR!!!!! Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 In a message dated 6/19/2005 8:04:11 PM Central Standard Time, yhwhworship@... writes: > I'm surprised is not on any prophylactic antibiotics if he is > low/missing IgA. > Wenoka: was absent IgA (confirmed with secretory IgA tests), AND antibody def and ID/Immuno didn't want her on prophylactic abx. She was worried about resistance. It was sink or swim time for ! I don't know if I've ever felt comfortable with the " treatment " , i.e. NOTHING, but I'm not going to second guess my not seeking another opinion back then, all I can do is move on from here, I guess. (mom to , age 6, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 In a message dated 6/19/2005 7:26:10 PM Central Standard Time, nwd30@... writes: > Is the new per say level 800 Just from the perspective of someone not getting IVIG -- my daughter is 6 and her IgG levels are in the 600s, she is not on any treatment. Her ID/immuno docs say her level is normal. Ever since she hit 500 they considered her " graduated " from their care. (mom to , age 6, dairy intolerant-related GERD -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs... and also to Kate, age 2-1/2, more dairy intolerant but very healthy!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 , goes every two weeks and has been for about 7 months now. Her energy is doing much better and her levels are going up. She had a spring cold and was able to fight it *(first one ever) so I am happy. We are struggling in other areas but working on them. gets 17 grams of gamma guard. She weighs 110 pounds however Lorri( 15 CVID) Re: igg level Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Hi Dawn, I know this is late, but I am catching up from a week in Fla. and saw your post. Dr. Steihn( I think) spoke on levels after infusing and said the goal of IVIG is to get the numbers 400 points above where they start. I thought this was interesting since every one starts out at a different number and if that is low, how will it work. They were showing starting numbers as low as IgG 10( ouch). Mom to - CVID, asthma, Gerd igg level I have a question? Is the new per say level 800? My sons doc is happy if he is at 600 before treatment. he has been sick about the last 2 and a half months now croup, sinus, eye infection. His levels haven't been to bad 5-600 before treatment. Are the new recommendations 800? He has been so cranky lately too...we just saw our immuno and he still wants to keep it at 4 four for now. We moved from 3 weeks 5 grams to 5 grams at 4 weeks. He is still off profalactic antibiotics. Although he has taken antibiotics twice for ten days both times for sinus infection so he hasn't been off to long now. thanks Dawn mother to cvid, gerd, asthma developmental delay, torticolis ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.<http://football.fantasysports./\ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribe@groups<mailto:-unsubscribe@groups>. To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Hi , here, I am catching up on posts from the conference. is infused every 2 weeks, she gets 10 grams of Polygam. She cannot go to 3 weeks because she is getting sick that last week and doesn't tolerate a higher dose of IVIG. This is working well for her.Her last trough was 885, we were thrilled. , Mom to - CVID, asthma, GERD Re: igg level Hannah's infusions are every two weeks, never longer, she is just under 80 lbs getting 30gm of gammagard. She is infused over the course of 5 hours. It seems others I read about the closest together they are infusing is every 3 weeks. We tried this and Hannah was always sick on that third week. We have been at every two weeks for over two years now and she is on prophylactic anitbiotics. She is still getting sick but not as severe infections. Does anyone know of anyone else at every two weeks? He IGG levels never go above 700 or so. We are really contemplating a third opinion for her. She was first diagnosed with only IGG deficient in 2 subclasses. Now she is deficient in 3 and also has low/no IGA. Things are changing but docs says no changes in treatment need to be made. Any opinions? mary (hannah, 14, CVID, JRA, Lupus) >I have a question? Is the new per say level 800? My sons doc is happy if >he is at 600 before treatment. --------------------------------- Sports Rekindle the Rivalries. Sign up for Fantasy Football Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.