Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Exactly but this would prevent the peaks and troughs somehow. I do not understand the mechanism yet but it causes the body to maintain the levels longer. ( in theory) BARBIE ________________________________ From: Lloyd <nanlloyd@...> Sent: Friday, January 9, 2009 1:58:21 PM Subject: Re: Once a month SCIG I have a stupid question. What is the purpose of doing SCIG once a month? I though the benefit of SCIG was doing it often enough that you don't have the levels have the big swings between infusions. L mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 , We do SCIG weekly -- which was a significant improvement over IVIG for the reasons you describe. (Also, no headaches!) But, I can easily imagine that she'll need a much larger dose when she is older and, at that point, she might benefit from the new formulation. Also, there are many kiddos who don't do well with weekly sticks (like Barbie's case) but might tolerate it every 2nd or 3rd week...so it gives more flexibility. It will be interesting to see how the kids do with this new method. Please keep us posted. mom to Dani, CVID ________________________________ From: Lloyd <nanlloyd@...> Sent: Friday, January 9, 2009 11:58:21 AM Subject: Re: Once a month SCIG I have a stupid question. What is the purpose of doing SCIG once a month? I though the benefit of SCIG was doing it often enough that you don't have the levels have the big swings between infusions. L mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Just thought I would post. Lucas went to the Drs office without problems this morning. He let her start him and did not complain. He has been a monster for the past year around these infusions to the point of escalating his behavior and needing several periods of inpatient care. ( mental health) I am hoping this will take some stress off of our relationship. It also occurred to me that he use to have his IVIg at the doctors office and so that is what he has been use to and comfortable . I would encourage any of you that are having trouble with your kids allowing you or having battles over it to talk to your kids about what they are feeling around it. I was going to say do not open a can of worms if you do not need to but I also feel that our kids may be feeling things they do not express. So use your judgement. I would have never thought that Lucas would have put so much weight on me not poking him and I will say I was able to help him focus this morning and cross over his leg to release the muscle in his back to the point that he said it really was less painful. I think it was more to do with control and anxiety than anything else. Since he did not pitch a fit or refuse then I feel that I have done the right thing to help him express his needs so he can figure out how he is going to deal with this for the long term. He has told me that he will not do it when he turns 18 and that he would rather die than do it. I also asked him if he lost a leg what would he do and he said he would kill himself. So in God's Wisdom I hope that will never happen. ( Since I believe he does not give us more than we can handle) BARBIE ________________________________ From: Schulman <dietdoc@...> Sent: Friday, January 9, 2009 3:38:13 PM Subject: Re: Re: Once a month SCIG , We do SCIG weekly -- which was a significant improvement over IVIG for the reasons you describe. (Also, no headaches!) But, I can easily imagine that she'll need a much larger dose when she is older and, at that point, she might benefit from the new formulation. Also, there are many kiddos who don't do well with weekly sticks (like Barbie's case) but might tolerate it every 2nd or 3rd week...so it gives more flexibility. It will be interesting to see how the kids do with this new method. Please keep us posted. mom to Dani, CVID ____________ _________ _________ __ From: Lloyd <nanlloydbellsouth (DOT) net> groups (DOT) com Sent: Friday, January 9, 2009 11:58:21 AM Subject: Re: Once a month SCIG I have a stupid question. What is the purpose of doing SCIG once a month? I though the benefit of SCIG was doing it often enough that you don't have the levels have the big swings between infusions. L mom to Ashton 15 CVID, Asthma, Dyslexia & Marina 12 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 I contacted the company and they are contacting Baxter to find out who is doing the trials. I also called our supplier Nufactor and there checking into it as well to see who is doing it. There betting our Dr and UCLA are participating in the trials and are checking with Dr @UCLA to see what he knows. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 My son said he would like to do it if he gets paid> All he wants is $20 per week to do it. Too bad I do not have it to give it to him. I am expecting blood draws are atleast weekly to make sure the levels stay up. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:14:06 AM Subject: Re: Re: Once a month SCIG I contacted the company and they are contacting Baxter to find out who is doing the trials. I also called our supplier Nufactor and there checking into it as well to see who is doing it. There betting our Dr and UCLA are participating in the trials and are checking with Dr @UCLA to see what he knows. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2009 Report Share Posted January 10, 2009 OH I DO REGULARLY but the problem is that he requires bribes or removing something to do anything in life right now. I am working with his Psychologist trying to figure out some new behaviors. He just says he does not want to grow up . He wants to be a kid always. LOL. He is going to be OK it is just a very bumpy road right now. BARBIE ________________________________ From: <bluetaelon@...> Sent: Saturday, January 10, 2009 2:32:33 AM Subject: Re: Re: Once a month SCIG Is there some other way to bribe him? *who never thought getting a kitten would solve behavior problems... Re: Re: Once a month SCIG > > > I contacted the company and they are contacting Baxter to find out who is > doing the trials. I also called our supplier Nufactor and there checking > into it as well to see who is doing it. There betting our Dr and UCLA are > participating in the trials and are checking with Dr @UCLA to see > what he knows. > > > > > > Quote Link to comment Share on other sites More sharing options...
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