Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi, Has anyone heard or used Bay Gam 16% ? le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 le, My daughter uses Baygam for subq infusions 2 times per week. Rose Mom to Stefanie-scids, epilepsy, asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi, I am a lurker whose daughter is planning on going subQ next week. We are concerned because the subQ doses that the docs have planned are a lot less than dividing the IVIG amount by the number of weeks between infusions (as I have heard other docs do for other patients) So my teenage daughter demanded (er asked) me to survey other IVIG to subQ families and see what they did. So I guess the questions are: if you switched from IVIG to subQ-- What was your IVIG dose ?(and how many weeks did you go inbetween doses) What is you subQ dose and what does your child weigh?. Thanks so much for any help you can provide! Martha Mom to a 17 yr old teenager contemplating going subQ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Martha-- S & J were getting 10grams every 4 weeks and now get 2.5 grams per week. S is 63 pounds and J is 69 pounds. ~Pattie Curran~ Piedmont Triad, NC Elbridge Gerry--signer of the Declaration of Independence, Govenor of Massachusetts and Vice President of the United States under Madison.... Ever wonder where the term gerrymandering comes from? While serving as governor of Massachusetts from 1810 to 1812, Elbridge Gerry helped enact a law dividing the Bay State into political districts favorable to his own party. This resulted in some odd shaped districts. One district looked like a salamander, someone said. Someone else joked that it looked more like a " gerrymander, " making a play on the governor's name. To this day, the practice of drawing boundary lines to favor a political party or group is called gerrymandering. _____ From: [mailto: ] On Behalf Of K979@... Sent: Thursday, April 06, 2006 6:04 PM Subject: Re: Sub Q question Hi, I am a lurker whose daughter is planning on going subQ next week. We are concerned because the subQ doses that the docs have planned are a lot less than dividing the IVIG amount by the number of weeks between infusions (as I have heard other docs do for other patients) So my teenage daughter demanded (er asked) me to survey other IVIG to subQ families and see what they did. So I guess the questions are: if you switched from IVIG to subQ-- What was your IVIG dose ?(and how many weeks did you go inbetween doses) What is you subQ dose and what does your child weigh?. Thanks so much for any help you can provide! Martha Mom to a 17 yr old teenager contemplating going subQ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Martha, first a question. Is she going to be using the same product as her IVIG or is it a different product/different solution strength? I just know that there's a new product out there that is higher strength so you would need a lower dose. But yes, Katy's doctor just took her regular monthly and divided it into 4 doses. Makes you wonder, doesn't it? I would certainly ask him why? Be glad she's asking questions and demanding answers -- It would be great if she would do the telephone call to him to ask why. It's so good for them to make that transition to taking care of their own questions!!! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Martha, first a question. Is she going to be using the same product as her IVIG or is it a different product/different solution strength? I just know that there's a new product out there that is higher strength so you would need a lower dose. But yes, Katy's doctor just took her regular monthly and divided it into 4 doses. Makes you wonder, doesn't it? I would certainly ask him why? Be glad she's asking questions and demanding answers -- It would be great if she would do the telephone call to him to ask why. It's so good for them to make that transition to taking care of their own questions!!! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Howdy Calvin was 3 when he changed over. His IV dose was 10g per month. We did a few months SubQ at 2.5g per week(simple division) and then tested levels. They bumped him up to 12.5g per month(2.5g in 5 doses) and his levels were much better. They told me that sometimes SubQ needed to be 125% of the IV dose. They did not assume that he needed more until they had some labwork to back it up. Obviously many people are successful simply dividing. I have had some docs/offices make some REALLY stupid math errors on labe work in the past, so I would press the point with them. Unless the doc really thinks your teen needs to change dose for some explainable medical reason, I think that the starting point should be simple division, as you said. My.02 Fisher mom of Calvin, 5yo, XLA K979@... wrote: Hi, I am a lurker whose daughter is planning on going subQ next week. We are concerned because the subQ doses that the docs have planned are a lot less than dividing the IVIG amount by the number of weeks between infusions (as I have heard other docs do for other patients) So my teenage daughter demanded (er asked) me to survey other IVIG to subQ families and see what they did. So I guess the questions are: if you switched from IVIG to subQ-- What was your IVIG dose ?(and how many weeks did you go inbetween doses) What is you subQ dose and what does your child weigh?. Thanks so much for any help you can provide! Martha Mom to a 17 yr old teenager contemplating going subQ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Thank you Dale, They are getting rid of Polygamm and going to use a liquid Gammagard which is new. She will be getting 5g per sugQ infusion and weighs 120 lbs. > > Martha, first a question. Is she going to be using the same product as > her IVIG or is it a different product/different solution strength? I > just know that there's a new product out there that is higher strength > so you would need a lower dose. > > But yes, Katy's doctor just took her regular monthly and divided it into > 4 doses. > > Makes you wonder, doesn't it? I would certainly ask him why? > Be glad she's asking questions and demanding answers -- It would be > great if she would do the telephone call to him to ask why. It's so > good for them to make that transition to taking care of their own > questions!!! > > In His service, > dale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Thank you Dale, They are getting rid of Polygamm and going to use a liquid Gammagard which is new. She will be getting 5g per sugQ infusion and weighs 120 lbs. > > Martha, first a question. Is she going to be using the same product as > her IVIG or is it a different product/different solution strength? I > just know that there's a new product out there that is higher strength > so you would need a lower dose. > > But yes, Katy's doctor just took her regular monthly and divided it into > 4 doses. > > Makes you wonder, doesn't it? I would certainly ask him why? > Be glad she's asking questions and demanding answers -- It would be > great if she would do the telephone call to him to ask why. It's so > good for them to make that transition to taking care of their own > questions!!! > > In His service, > dale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Thank you Pattie and . I really appreciated your input. I am forwarding the information to my dd. --Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Thank you Pattie and . I really appreciated your input. I am forwarding the information to my dd. --Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 kwright979 wrote: > > Thank you Dale, > They are getting rid of Polygamm and going to use a liquid Gammagard > which is new. She will be getting 5g per sugQ infusion and weighs > 120 lbs. I don't remember how much you said she was getting IV, but this dosage is slightly low for her body weight. The recommendation by IDF is 400-800 mg/kg body weight. For your daughter that range turns out to be 21.8 grams up to 43.0 grams -- divided by 4 doses would be anywhere from 5.45 to 10.75 every week. Of course, we want to use the lowest possible dose to keep her maintained -- but I don't understand why they would move her backward if she's well controlled. He may tell you that he just wants to start slowly and check levels and build from there -- but, I would certainly ask!!!! Best wishes parenting an " adult " child! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 Martha, We took the monthly dose and divided it by four and infuse weekly.... Someone else probably already posted that....but that is how our doctor and infusion company started....We started on subq and didn't transistion from IVIG>.. Typically the recommendation is to do your monthly IVIG and then the following week start your subq doses... Hope that helps. Re: Sub Q question Hi, I am a lurker whose daughter is planning on going subQ next week. We are concerned because the subQ doses that the docs have planned are a lot less than dividing the IVIG amount by the number of weeks between infusions (as I have heard other docs do for other patients) So my teenage daughter demanded (er asked) me to survey other IVIG to subQ families and see what they did. So I guess the questions are: if you switched from IVIG to subQ-- What was your IVIG dose ?(and how many weeks did you go inbetween doses) What is you subQ dose and what does your child weigh?. Thanks so much for any help you can provide! Martha Mom to a 17 yr old teenager contemplating going subQ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 -Hi we do 5grams( or 50 ml) a week sub Q gammagard.. we need 4 sites.. We also do it once a week... and love it.. As for infusion time.. it depends...on pump and child.. you can set the rate with some pumps.. we use the freedom pump.. and honestly some days it takes longet than others...1-2 hrs... Hope this helps Warmly Kathleen -- In , " Misty " <mistycmathis@...> wrote: > > I usually don't post often but a lot has gone on in the past few > weeks!! > Jake went back to his immunologist this week...we had to start the > IVIG back. Well on the first round we did IVIG through a port and now > we have been offered by the Dr. the option of Sub Q. My question is : > He is on 10 grams of Gammagard if we do the Sub Q do you know how many > sites it would take? how much would he infuse each time? and how long > do you think it would take to infuse him? All I have to do is call the > Dr. back and let him know yes or no...he is scheduled for his next > infusion on April 23rd...would he start Sub Q a week later? Thanks in > advance for any responses. > > Misty ` Jake age 6 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 It depends on the %age of the solution. If you stay with Gammaguard Liquid, that would be 100ml to infuse & we can only do 15ml per site, so 7 sites? Unless you could do slightly more than 15ml per site and do 6 sites. Vivaglobin would have less liquid to infuse... If you did all the lines at one time, it should only take up to 2 hours, depending on the pump. We use the Freedom 60. and it takes just over an hour to infuse 25ml into 2 sites using the 60ml/hr tubing and just over 2 hours with the 30ml/hr tubing. Before we were using the Graseby pump and it took longer, but we could adjust the settings. Not sure if I have helped you any. Peace be with you, Pattie Our boys won $100 for our charity, Shwachman-Diamond America with this video: http://www.shwachmandiamondamerica.org/Goodsearch_video.html Who do you Goodsearch for? I Goodsearch for Shwachman-Diamond America! _____ From: [mailto: ] On Behalf Of Misty Sent: Thursday, April 03, 2008 1:44 PM Subject: Sub Q question I usually don't post often but a lot has gone on in the past few weeks!! Jake went back to his immunologist this week...we had to start the IVIG back. Well on the first round we did IVIG through a port and now we have been offered by the Dr. the option of Sub Q. My question is : He is on 10 grams of Gammagard if we do the Sub Q do you know how many sites it would take? how much would he infuse each time? and how long do you think it would take to infuse him? All I have to do is call the Dr. back and let him know yes or no...he is scheduled for his next infusion on April 23rd...would he start Sub Q a week later? Thanks in advance for any responses. Misty ` Jake age 6 Quote Link to comment Share on other sites More sharing options...
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