Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hi , I can only answer as an adult who gets SUB-Q. at this point, my son with PID does not get gamma. I have had no side effects from the subq and I used to get joint pain, shivers, headache, and, once, anaphylaxis (scared the heck out of me!). I tend to run the subq very fast b/c I have never had any complications and I've been on it 3 yrs. So, maybe it takes me one hour 2x a week to run it. After I stick the needles in, I just put the pump in a little pack and do what I would normally do (run after 2 busy kids!). It does hurt to put the needles in. What works for me, instead of Emla, is to just put some ice on it while I get the pump ready and primed. Then my skin is cold and I typically don't feel a thing. I've heard it's easier in adults than kids b/c we have more fat and fatty areas are good sites to inject in (I use my hips). I don't mix it. It comes all ready. So, for me, it's easier and I feel much less like a " sick " person b/c I don't have to go to the hospital ever 3 weeks. And, I don't have any complications. Hope that helps. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Oh, please keep this on the whole list. Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Sorry I forgot to add the like to the blog. http://jacobscvid.blogspot.com/ We will be going to the IDF Convention in Orlando and hope to meet some of you. I would love my son to be able to meet someone that can relate to waht he is going through. > > From: ldh010@... > Date: Tue, 9 Jun 2009 12:06:26 -0500 > Subject: RE: question about sub-q > > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area since he has a little fat roll. We premedicate with Tylenol and Benadry (Motrin gave him severe headaches). > > > > These are the general steps we follow. > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds press and seal with a little tape on top) > > > > Then we set up all out supplies. only does one site . 1 softset 9mm needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 pump and prime (turn on pump let the Vivaglobin run through the tubing to the needle) Turn off pump and clamp off tubing and remove from Freedom 60 pump. > > We use a auto inserter that inserts the needle so I don't have to do the needle insertion. Once inserted we remove the needle part and a cathater stays in. We pull back the plunger to make sure we are in a good spot (no blood). The we put the syringe back in the pump turn it on. It taks up about 1.5-2 hours to infuse weekly and we have remained infection free so far for over 1 month. > > > > Here is the website to a blog I created, like a journal. I put some information about the vivaglobin and side effects. Hope this helps > > > > > > Mom to 5 CVID > > > > > > > From: derrickandchristine@... > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > Subject: Re: question about sub-q > > > > We too are considering this. I think it will be great, esp with school > > starting in September. I hate to be a pain, but can you give me step by step > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > cause discomfort or pain (like an IV does?) How long is the weekly > > infusion?Thanks, > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > fact > > > SCIG has to be started within 7 days of IVIG. If your outside that window > > > you have to wait until the next infusion then the training curve takes > > > several weeks (we used the softsets since dd didn't really have any sub-q > > > tissue and we had a lot of problems with it, if she has plenty of body fat > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > question about sub-q > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > start sub-Q! We are all for this, but were wondering how long the process > > > > > > > takes to get started-our insurance should not be a problem as we did not > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > Maddie would like to get this started as soon as she can-she loves the > > > > more active lifestyle she has gained from IvIg-but hates that last part > > > of > > > > the month when she is so tired again. We thought he was going to take her > > > > > > > off for the summer, but her numbers have continued to fall and he feels > > > > she is better off to just stay on. > > > > > > > > Any help would be appreciated! > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Sorry I forgot to add the like to the blog. http://jacobscvid.blogspot.com/ We will be going to the IDF Convention in Orlando and hope to meet some of you. I would love my son to be able to meet someone that can relate to waht he is going through. > > From: ldh010@... > Date: Tue, 9 Jun 2009 12:06:26 -0500 > Subject: RE: question about sub-q > > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area since he has a little fat roll. We premedicate with Tylenol and Benadry (Motrin gave him severe headaches). > > > > These are the general steps we follow. > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds press and seal with a little tape on top) > > > > Then we set up all out supplies. only does one site . 1 softset 9mm needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 pump and prime (turn on pump let the Vivaglobin run through the tubing to the needle) Turn off pump and clamp off tubing and remove from Freedom 60 pump. > > We use a auto inserter that inserts the needle so I don't have to do the needle insertion. Once inserted we remove the needle part and a cathater stays in. We pull back the plunger to make sure we are in a good spot (no blood). The we put the syringe back in the pump turn it on. It taks up about 1.5-2 hours to infuse weekly and we have remained infection free so far for over 1 month. > > > > Here is the website to a blog I created, like a journal. I put some information about the vivaglobin and side effects. Hope this helps > > > > > > Mom to 5 CVID > > > > > > > From: derrickandchristine@... > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > Subject: Re: question about sub-q > > > > We too are considering this. I think it will be great, esp with school > > starting in September. I hate to be a pain, but can you give me step by step > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > cause discomfort or pain (like an IV does?) How long is the weekly > > infusion?Thanks, > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > fact > > > SCIG has to be started within 7 days of IVIG. If your outside that window > > > you have to wait until the next infusion then the training curve takes > > > several weeks (we used the softsets since dd didn't really have any sub-q > > > tissue and we had a lot of problems with it, if she has plenty of body fat > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > question about sub-q > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > start sub-Q! We are all for this, but were wondering how long the process > > > > > > > takes to get started-our insurance should not be a problem as we did not > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > Maddie would like to get this started as soon as she can-she loves the > > > > more active lifestyle she has gained from IvIg-but hates that last part > > > of > > > > the month when she is so tired again. We thought he was going to take her > > > > > > > off for the summer, but her numbers have continued to fall and he feels > > > > she is better off to just stay on. > > > > > > > > Any help would be appreciated! > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 JUST START IT SINCE SHE HAS ALREADY BEEN ON IV THEN SHE WILL NOT NEED TO DO ANYTHING BUT TAKE HER NEXT IV THEN WAIT A WEEK AND START SUB q> IT IS TO MAKE SURE HER LEVELS ARE UP AND THEN ARE MAINTAINED WITH THE WEEKLY INFUSIONS. BARBIEÂ Â From: Becky McClure <beckymcclure825@...> Subject: question about sub-q " " < > Date: Tuesday, June 9, 2009, 11:02 AM Maddie has been on IvIg since October and her doctor is wanting us to start sub-Q! We are all for this, but were wondering how long the process takes to get started-our insurance should not be a problem as we did not even need to be precertified for IvIg-weird I know! Maddie would like to get this started as soon as she can-she loves the more active lifestyle she has gained from IvIg-but hates that last part of the month when she is so tired again. We thought he was going to take her off for the summer, but her numbers have continued to fall and he feels she is better off to just stay on. Any help would be appreciated! Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 JUST START IT SINCE SHE HAS ALREADY BEEN ON IV THEN SHE WILL NOT NEED TO DO ANYTHING BUT TAKE HER NEXT IV THEN WAIT A WEEK AND START SUB q> IT IS TO MAKE SURE HER LEVELS ARE UP AND THEN ARE MAINTAINED WITH THE WEEKLY INFUSIONS. BARBIEÂ Â From: Becky McClure <beckymcclure825@...> Subject: question about sub-q " " < > Date: Tuesday, June 9, 2009, 11:02 AM Maddie has been on IvIg since October and her doctor is wanting us to start sub-Q! We are all for this, but were wondering how long the process takes to get started-our insurance should not be a problem as we did not even need to be precertified for IvIg-weird I know! Maddie would like to get this started as soon as she can-she loves the more active lifestyle she has gained from IvIg-but hates that last part of the month when she is so tired again. We thought he was going to take her off for the summer, but her numbers have continued to fall and he feels she is better off to just stay on. Any help would be appreciated! Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 For us it has been an emotional challenge for my son since he feels that MOM should not poke him. I would make sure your child is willing to have you stick them. For you 13yo daughter she is old enough to do it herself if she want to. It depends on her personality and willingness. It is VERY VERY simple to do and we only do 2 sites and use Gammgard SD rather than Vivoglobin. He is able to do 30cc per site and we infuse on his hips or Love handles as he says it is LESS painful. It gets a little bump with some redness( was more the first couple of times but has gradually decreased over time(3 years) He refuses to have it done in his admomen. BARBIE  > > > Its been a while but it didn't take long, what took the longest was the > fact > SCIG has to be started within 7 days of IVIG. If your outside that window > you have to wait until the next infusion then the training curve takes > several weeks (we used the softsets since dd didn't really have any sub-q > tissue and we had a lot of problems with it, if she has plenty of body fat > you should be fine and its much easier to use the sets) > > > > > question about sub-q > > > Maddie has been on IvIg since October and her doctor is wanting us to > > start sub-Q! We are all for this, but were wondering how long the process > > > takes to get started-our insurance should not be a problem as we did not > > even need to be precertified for IvIg-weird I know! > > > > Maddie would like to get this started as soon as she can-she loves the > > more active lifestyle she has gained from IvIg-but hates that last part > of > > the month when she is so tired again. We thought he was going to take her > > > off for the summer, but her numbers have continued to fall and he feels > > she is better off to just stay on. > > > > Any help would be appreciated! > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 For us it has been an emotional challenge for my son since he feels that MOM should not poke him. I would make sure your child is willing to have you stick them. For you 13yo daughter she is old enough to do it herself if she want to. It depends on her personality and willingness. It is VERY VERY simple to do and we only do 2 sites and use Gammgard SD rather than Vivoglobin. He is able to do 30cc per site and we infuse on his hips or Love handles as he says it is LESS painful. It gets a little bump with some redness( was more the first couple of times but has gradually decreased over time(3 years) He refuses to have it done in his admomen. BARBIE  > > > Its been a while but it didn't take long, what took the longest was the > fact > SCIG has to be started within 7 days of IVIG. If your outside that window > you have to wait until the next infusion then the training curve takes > several weeks (we used the softsets since dd didn't really have any sub-q > tissue and we had a lot of problems with it, if she has plenty of body fat > you should be fine and its much easier to use the sets) > > > > > question about sub-q > > > Maddie has been on IvIg since October and her doctor is wanting us to > > start sub-Q! We are all for this, but were wondering how long the process > > > takes to get started-our insurance should not be a problem as we did not > > even need to be precertified for IvIg-weird I know! > > > > Maddie would like to get this started as soon as she can-she loves the > > more active lifestyle she has gained from IvIg-but hates that last part > of > > the month when she is so tired again. We thought he was going to take her > > > off for the summer, but her numbers have continued to fall and he feels > > she is better off to just stay on. > > > > Any help would be appreciated! > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 oh it only takes about 11/2 hours for us to infuse 60cc or 6gms. BARBIEÂ Â Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 oh it only takes about 11/2 hours for us to infuse 60cc or 6gms. BARBIEÂ Â Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 , My twins are also five and I would love to chat with another mom with kids the same age going through the same thing. My email address is pavlutracy@... - > > > > > > > Its been a while but it didn't take long, what took the longest was the > > fact > > SCIG has to be started within 7 days of IVIG. If your outside that window > > you have to wait until the next infusion then the training curve takes > > several weeks (we used the softsets since dd didn't really have any sub-q > > tissue and we had a lot of problems with it, if she has plenty of body fat > > you should be fine and its much easier to use the sets) > > > > > > > > > > question about sub-q > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > start sub-Q! We are all for this, but were wondering how long the process > > > > > takes to get started-our insurance should not be a problem as we did not > > > even need to be precertified for IvIg-weird I know! > > > > > > Maddie would like to get this started as soon as she can-she loves the > > > more active lifestyle she has gained from IvIg-but hates that last part > > of > > > the month when she is so tired again. We thought he was going to take her > > > > > off for the summer, but her numbers have continued to fall and he feels > > > she is better off to just stay on. > > > > > > Any help would be appreciated! > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 , My twins are also five and I would love to chat with another mom with kids the same age going through the same thing. My email address is pavlutracy@... - > > > > > > > Its been a while but it didn't take long, what took the longest was the > > fact > > SCIG has to be started within 7 days of IVIG. If your outside that window > > you have to wait until the next infusion then the training curve takes > > several weeks (we used the softsets since dd didn't really have any sub-q > > tissue and we had a lot of problems with it, if she has plenty of body fat > > you should be fine and its much easier to use the sets) > > > > > > > > > > question about sub-q > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > start sub-Q! We are all for this, but were wondering how long the process > > > > > takes to get started-our insurance should not be a problem as we did not > > > even need to be precertified for IvIg-weird I know! > > > > > > Maddie would like to get this started as soon as she can-she loves the > > > more active lifestyle she has gained from IvIg-but hates that last part > > of > > > the month when she is so tired again. We thought he was going to take her > > > > > off for the summer, but her numbers have continued to fall and he feels > > > she is better off to just stay on. > > > > > > Any help would be appreciated! > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 This is fantastic, thank you!!! Do you still have a home health agency involved at all? Does a nurse ever visit, or is everything done through your doctor? Does the needle " hurt " when it pokes the skin? Does any part of it make you uncomfortable? Any side effects? For how long do you medicate after? Thank you again, On Tue, Jun 9, 2009 at 10:06 AM, Klipp <ldh010@...> wrote: > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area > since he has a little fat roll. We premedicate with Tylenol and Benadry > (Motrin gave him severe headaches). > > > > These are the general steps we follow. > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the > Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) > cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds > press and seal with a little tape on top) > > > > Then we set up all out supplies. only does one site . 1 softset 9mm > needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, > insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do > this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach > softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 > pump and prime (turn on pump let the Vivaglobin run through the tubing to > the needle) Turn off pump and clamp off tubing and remove from Freedom 60 > pump. > > We use a auto inserter that inserts the needle so I don't have to do the > needle insertion. Once inserted we remove the needle part and a cathater > stays in. We pull back the plunger to make sure we are in a good spot (no > blood). The we put the syringe back in the pump turn it on. It taks up > about 1.5-2 hours to infuse weekly and we have remained infection free so > far for over 1 month. > > > > Here is the website to a blog I created, like a journal. I put some > information about the vivaglobin and side effects. Hope this helps > > > > > > Mom to 5 CVID > > > > > > > From: derrickandchristine@... > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > Subject: Re: question about sub-q > > > > We too are considering this. I think it will be great, esp with school > > starting in September. I hate to be a pain, but can you give me step by > step > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > cause discomfort or pain (like an IV does?) How long is the weekly > > infusion?Thanks, > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > fact > > > SCIG has to be started within 7 days of IVIG. If your outside that > window > > > you have to wait until the next infusion then the training curve takes > > > several weeks (we used the softsets since dd didn't really have any > sub-q > > > tissue and we had a lot of problems with it, if she has plenty of body > fat > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > question about sub-q > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > start sub-Q! We are all for this, but were wondering how long the > process > > > > > > > takes to get started-our insurance should not be a problem as we did > not > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > Maddie would like to get this started as soon as she can-she loves > the > > > > more active lifestyle she has gained from IvIg-but hates that last > part > > > of > > > > the month when she is so tired again. We thought he was going to take > her > > > > > > > off for the summer, but her numbers have continued to fall and he > feels > > > > she is better off to just stay on. > > > > > > > > Any help would be appreciated! > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 This is fantastic, thank you!!! Do you still have a home health agency involved at all? Does a nurse ever visit, or is everything done through your doctor? Does the needle " hurt " when it pokes the skin? Does any part of it make you uncomfortable? Any side effects? For how long do you medicate after? Thank you again, On Tue, Jun 9, 2009 at 10:06 AM, Klipp <ldh010@...> wrote: > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area > since he has a little fat roll. We premedicate with Tylenol and Benadry > (Motrin gave him severe headaches). > > > > These are the general steps we follow. > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the > Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) > cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds > press and seal with a little tape on top) > > > > Then we set up all out supplies. only does one site . 1 softset 9mm > needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, > insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do > this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach > softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 > pump and prime (turn on pump let the Vivaglobin run through the tubing to > the needle) Turn off pump and clamp off tubing and remove from Freedom 60 > pump. > > We use a auto inserter that inserts the needle so I don't have to do the > needle insertion. Once inserted we remove the needle part and a cathater > stays in. We pull back the plunger to make sure we are in a good spot (no > blood). The we put the syringe back in the pump turn it on. It taks up > about 1.5-2 hours to infuse weekly and we have remained infection free so > far for over 1 month. > > > > Here is the website to a blog I created, like a journal. I put some > information about the vivaglobin and side effects. Hope this helps > > > > > > Mom to 5 CVID > > > > > > > From: derrickandchristine@... > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > Subject: Re: question about sub-q > > > > We too are considering this. I think it will be great, esp with school > > starting in September. I hate to be a pain, but can you give me step by > step > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > cause discomfort or pain (like an IV does?) How long is the weekly > > infusion?Thanks, > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > fact > > > SCIG has to be started within 7 days of IVIG. If your outside that > window > > > you have to wait until the next infusion then the training curve takes > > > several weeks (we used the softsets since dd didn't really have any > sub-q > > > tissue and we had a lot of problems with it, if she has plenty of body > fat > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > question about sub-q > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > start sub-Q! We are all for this, but were wondering how long the > process > > > > > > > takes to get started-our insurance should not be a problem as we did > not > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > Maddie would like to get this started as soon as she can-she loves > the > > > > more active lifestyle she has gained from IvIg-but hates that last > part > > > of > > > > the month when she is so tired again. We thought he was going to take > her > > > > > > > off for the summer, but her numbers have continued to fall and he > feels > > > > she is better off to just stay on. > > > > > > > > Any help would be appreciated! > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 We work through Accredo home health care. The call us monthly to find out what supplies we need and to get all of s information. How much he weighs, how tall he is, what are his current medication, how has his rates and severity with infections been. They came out to our house 3 times. The first time they did it, the second time my husband did the infusion and the last time I did the infusion. As far as the needle hurting he says it feels like a mosquito bite just for a second after the needle part he is active sometimes so active we have to slow him down so he doesn't pull the tube out. He freaks out about the needle part but he still hasn't gotten used to infusion part. We have only been doing Sub-Q since February 13 and never did IVIG so this is still new to him. I can't do the needle part by hand I get to squemish so we bought a injector from the manufacturer off the internet for 30.00. I have no problems doing it that way. As far as side effects go we have been VERY lucky. He has only had two occurances with side effects and they were severe headache. We discovered that fluid helps the Vivaglobin absorption and it takes 48 hours for the Vivaglobin to get absorbed by the body so it is crutial to drink a lot in that 48 hour window. If he drinks alot we have NO side effects and the only time I have had to medicate him after the infusion is the 2 occuranes he got a headace. He infuses on Friday night we start at 8pm and are usually done by 9:30-10pm. By Saturday moring he has no residual effects and has been up on Saturday morning for soccer games. Hope this help and if you need any other information feel free to call me. My cell number is 703-731-0931. > > From: derrickandchristine@... > Date: Tue, 9 Jun 2009 13:56:35 -0700 > Subject: Re: question about sub-q > > This is fantastic, thank you!!! Do you still have a home health agency > involved at all? Does a nurse ever visit, or is everything done through your > doctor? Does the needle " hurt " when it pokes the skin? Does any part of it > make you uncomfortable? Any side effects? For how long do you medicate > after? Thank you again, > > > On Tue, Jun 9, 2009 at 10:06 AM, Klipp <ldh010@...> wrote: > > > > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area > > since he has a little fat roll. We premedicate with Tylenol and Benadry > > (Motrin gave him severe headaches). > > > > > > > > These are the general steps we follow. > > > > > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the > > Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) > > cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds > > press and seal with a little tape on top) > > > > > > > > Then we set up all out supplies. only does one site . 1 softset 9mm > > needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, > > insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do > > this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach > > softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 > > pump and prime (turn on pump let the Vivaglobin run through the tubing to > > the needle) Turn off pump and clamp off tubing and remove from Freedom 60 > > pump. > > > > We use a auto inserter that inserts the needle so I don't have to do the > > needle insertion. Once inserted we remove the needle part and a cathater > > stays in. We pull back the plunger to make sure we are in a good spot (no > > blood). The we put the syringe back in the pump turn it on. It taks up > > about 1.5-2 hours to infuse weekly and we have remained infection free so > > far for over 1 month. > > > > > > > > Here is the website to a blog I created, like a journal. I put some > > information about the vivaglobin and side effects. Hope this helps > > > > > > > > > > > > Mom to 5 CVID > > > > > > > > > > > > From: derrickandchristine@... > > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > > Subject: Re: question about sub-q > > > > > > We too are considering this. I think it will be great, esp with school > > > starting in September. I hate to be a pain, but can you give me step by > > step > > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > > cause discomfort or pain (like an IV does?) How long is the weekly > > > infusion?Thanks, > > > > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > fact > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > window > > > > you have to wait until the next infusion then the training curve takes > > > > several weeks (we used the softsets since dd didn't really have any > > sub-q > > > > tissue and we had a lot of problems with it, if she has plenty of body > > fat > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 We work through Accredo home health care. The call us monthly to find out what supplies we need and to get all of s information. How much he weighs, how tall he is, what are his current medication, how has his rates and severity with infections been. They came out to our house 3 times. The first time they did it, the second time my husband did the infusion and the last time I did the infusion. As far as the needle hurting he says it feels like a mosquito bite just for a second after the needle part he is active sometimes so active we have to slow him down so he doesn't pull the tube out. He freaks out about the needle part but he still hasn't gotten used to infusion part. We have only been doing Sub-Q since February 13 and never did IVIG so this is still new to him. I can't do the needle part by hand I get to squemish so we bought a injector from the manufacturer off the internet for 30.00. I have no problems doing it that way. As far as side effects go we have been VERY lucky. He has only had two occurances with side effects and they were severe headache. We discovered that fluid helps the Vivaglobin absorption and it takes 48 hours for the Vivaglobin to get absorbed by the body so it is crutial to drink a lot in that 48 hour window. If he drinks alot we have NO side effects and the only time I have had to medicate him after the infusion is the 2 occuranes he got a headace. He infuses on Friday night we start at 8pm and are usually done by 9:30-10pm. By Saturday moring he has no residual effects and has been up on Saturday morning for soccer games. Hope this help and if you need any other information feel free to call me. My cell number is 703-731-0931. > > From: derrickandchristine@... > Date: Tue, 9 Jun 2009 13:56:35 -0700 > Subject: Re: question about sub-q > > This is fantastic, thank you!!! Do you still have a home health agency > involved at all? Does a nurse ever visit, or is everything done through your > doctor? Does the needle " hurt " when it pokes the skin? Does any part of it > make you uncomfortable? Any side effects? For how long do you medicate > after? Thank you again, > > > On Tue, Jun 9, 2009 at 10:06 AM, Klipp <ldh010@...> wrote: > > > > > My son gets sub-q he is 5. We love it. He gets it in his abdomial area > > since he has a little fat roll. We premedicate with Tylenol and Benadry > > (Motrin gave him severe headaches). > > > > > > > > These are the general steps we follow. > > > > > > > > 1 hour prior to infusion premedicate with Tylenol & Benadryl. Take the > > Vivaglobin out of the fridge to get to room temperature and apply LMX (emla) > > cream to site(s) cover the LMX cream so it doesn't wipe off (I use reynolds > > press and seal with a little tape on top) > > > > > > > > Then we set up all out supplies. only does one site . 1 softset 9mm > > needle, extension tubing, 60ml syringe, mini-spike, Freedom 60 pump. > > > > > > > > Take the vials of tubes and " pop " the tops wipe down with an alcohol pad, > > insert mini-spike into vial top draw all Vivaglobin into 60ml Syringe (do > > this for each vial), we use 3 vials, 2 3ml vials and 1 10ml vial. > > > > Remove mini-spike from 60ml Syringe and attach extention tubing and attach > > softset needle to extension tubing. Insert 60ml Syringe into Freedom 60 > > pump and prime (turn on pump let the Vivaglobin run through the tubing to > > the needle) Turn off pump and clamp off tubing and remove from Freedom 60 > > pump. > > > > We use a auto inserter that inserts the needle so I don't have to do the > > needle insertion. Once inserted we remove the needle part and a cathater > > stays in. We pull back the plunger to make sure we are in a good spot (no > > blood). The we put the syringe back in the pump turn it on. It taks up > > about 1.5-2 hours to infuse weekly and we have remained infection free so > > far for over 1 month. > > > > > > > > Here is the website to a blog I created, like a journal. I put some > > information about the vivaglobin and side effects. Hope this helps > > > > > > > > > > > > Mom to 5 CVID > > > > > > > > > > > > From: derrickandchristine@... > > > Date: Tue, 9 Jun 2009 09:30:52 -0700 > > > Subject: Re: question about sub-q > > > > > > We too are considering this. I think it will be great, esp with school > > > starting in September. I hate to be a pain, but can you give me step by > > step > > > of how to do the Sub-Q. How is it applied? How big is the needle? Does it > > > cause discomfort or pain (like an IV does?) How long is the weekly > > > infusion?Thanks, > > > > > > > > > On Tue, Jun 9, 2009 at 9:09 AM, <bluetaelon@...> wrote: > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > fact > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > window > > > > you have to wait until the next infusion then the training curve takes > > > > several weeks (we used the softsets since dd didn't really have any > > sub-q > > > > tissue and we had a lot of problems with it, if she has plenty of body > > fat > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 What kind of injector did you find? And what kind of needles do you use. We use the butterfly sets so I do not know if they would work. I think it would be less painful to use the injector and maybe my son would be less upset by it. Thanks BARBIE  > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > fact > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > window > > > > you have to wait until the next infusion then the training curve takes > > > > several weeks (we used the softsets since dd didn't really have any > > sub-q > > > > tissue and we had a lot of problems with it, if she has plenty of body > > fat > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 What kind of injector did you find? And what kind of needles do you use. We use the butterfly sets so I do not know if they would work. I think it would be less painful to use the injector and maybe my son would be less upset by it. Thanks BARBIE  > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > fact > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > window > > > > you have to wait until the next infusion then the training curve takes > > > > several weeks (we used the softsets since dd didn't really have any > > sub-q > > > > tissue and we had a lot of problems with it, if she has plenty of body > > fat > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Here is the link to the injector we use. http://www.minimed.com/products/infusionsets/sofset.html We use the Sof-set ultimate QR 9mm infusion set. It is a butterfly set as well. The injector is designed to be used with the infusion set we use but it looks like it could be universal. > > From: mother5590@... > Date: Tue, 9 Jun 2009 18:15:41 -0700 > Subject: RE: question about sub-q > > What kind of injector did you find? And what kind of needles do you use. We use the butterfly sets so I do not know if they would work. I think it would be less painful to use the injector and maybe my son would be less upset by it. Thanks > > BARBIE > > > > > > > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > > fact > > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > > window > > > > > you have to wait until the next infusion then the training curve takes > > > > > several weeks (we used the softsets since dd didn't really have any > > > sub-q > > > > > tissue and we had a lot of problems with it, if she has plenty of body > > > fat > > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > > start sub-Q! We are all for this, but were wondering how long the > > > process > > > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > > not > > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > > the > > > > > > more active lifestyle she has gained from IvIg-but hates that last > > > part > > > > > of > > > > > > the month when she is so tired again. We thought he was going to take > > > her > > > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > > feels > > > > > > she is better off to just stay on. > > > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Here is the link to the injector we use. http://www.minimed.com/products/infusionsets/sofset.html We use the Sof-set ultimate QR 9mm infusion set. It is a butterfly set as well. The injector is designed to be used with the infusion set we use but it looks like it could be universal. > > From: mother5590@... > Date: Tue, 9 Jun 2009 18:15:41 -0700 > Subject: RE: question about sub-q > > What kind of injector did you find? And what kind of needles do you use. We use the butterfly sets so I do not know if they would work. I think it would be less painful to use the injector and maybe my son would be less upset by it. Thanks > > BARBIE > > > > > > > > > > > > > > > > > > > > > Its been a while but it didn't take long, what took the longest was the > > > > > fact > > > > > SCIG has to be started within 7 days of IVIG. If your outside that > > > window > > > > > you have to wait until the next infusion then the training curve takes > > > > > several weeks (we used the softsets since dd didn't really have any > > > sub-q > > > > > tissue and we had a lot of problems with it, if she has plenty of body > > > fat > > > > > you should be fine and its much easier to use the sets) > > > > > > > > > > > > > > > > > > > > > > > > > question about sub-q > > > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us to > > > > > > start sub-Q! We are all for this, but were wondering how long the > > > process > > > > > > > > > > > takes to get started-our insurance should not be a problem as we did > > > not > > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > > the > > > > > > more active lifestyle she has gained from IvIg-but hates that last > > > part > > > > > of > > > > > > the month when she is so tired again. We thought he was going to take > > > her > > > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > > feels > > > > > > she is better off to just stay on. > > > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 How did you not do IVIG first? I was under the impression you have to do at least 1 IV infusion then switch to SCIG. If you don't you can't get the levels up to theraputic levels is my understanding. Its why you only have a 3 day window on either side of infusion day, you miss it and you have to go in and do IVIG to restart the cycles again, the levels wont keep rising and are just maintained. question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us > > > > > to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we > > > > > did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to > > > > > take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 How did you not do IVIG first? I was under the impression you have to do at least 1 IV infusion then switch to SCIG. If you don't you can't get the levels up to theraputic levels is my understanding. Its why you only have a 3 day window on either side of infusion day, you miss it and you have to go in and do IVIG to restart the cycles again, the levels wont keep rising and are just maintained. question about sub-q > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us > > > > > to > > > > > start sub-Q! We are all for this, but were wondering how long the > > process > > > > > > > > > takes to get started-our insurance should not be a problem as we > > > > > did > > not > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > the > > > > > more active lifestyle she has gained from IvIg-but hates that last > > part > > > > of > > > > > the month when she is so tired again. We thought he was going to > > > > > take > > her > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > feels > > > > > she is better off to just stay on. > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Don't know we just started therapy of any type in February and we started from the beginning on Sub-Q Vivaglobin. We spoke to obviously our Dr. and we spoke to the nurses at Accredo and reps from Vivaglobin. We didn't notice much difference in his health through March and April we got off out last 21 day supply of antibiotics on May 3rd and he has remained infection free since May 3rd. Prior to this we had not been off antibiotics for more than 2-3 days in the past year. We got his IGG levels retested today to see if his Vivaglobin needs any adjusting. We are happy with the results so far. > > From: bluetaelon@... > Date: Tue, 9 Jun 2009 20:01:40 -0700 > Subject: Re: question about sub-q > > How did you not do IVIG first? I was under the impression you have to do at > least 1 IV infusion then switch to SCIG. If you don't you can't get the > levels up to theraputic levels is my understanding. Its why you only have a > 3 day window on either side of infusion day, you miss it and you have to go > in and do IVIG to restart the cycles again, the levels wont keep rising and > are just maintained. > > > > question about sub-q > > > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us > > > > > > to > > > > > > start sub-Q! We are all for this, but were wondering how long the > > > process > > > > > > > > > > > takes to get started-our insurance should not be a problem as we > > > > > > did > > > not > > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > > the > > > > > > more active lifestyle she has gained from IvIg-but hates that last > > > part > > > > > of > > > > > > the month when she is so tired again. We thought he was going to > > > > > > take > > > her > > > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > > feels > > > > > > she is better off to just stay on. > > > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Don't know we just started therapy of any type in February and we started from the beginning on Sub-Q Vivaglobin. We spoke to obviously our Dr. and we spoke to the nurses at Accredo and reps from Vivaglobin. We didn't notice much difference in his health through March and April we got off out last 21 day supply of antibiotics on May 3rd and he has remained infection free since May 3rd. Prior to this we had not been off antibiotics for more than 2-3 days in the past year. We got his IGG levels retested today to see if his Vivaglobin needs any adjusting. We are happy with the results so far. > > From: bluetaelon@... > Date: Tue, 9 Jun 2009 20:01:40 -0700 > Subject: Re: question about sub-q > > How did you not do IVIG first? I was under the impression you have to do at > least 1 IV infusion then switch to SCIG. If you don't you can't get the > levels up to theraputic levels is my understanding. Its why you only have a > 3 day window on either side of infusion day, you miss it and you have to go > in and do IVIG to restart the cycles again, the levels wont keep rising and > are just maintained. > > > > question about sub-q > > > > > > > > > > > Maddie has been on IvIg since October and her doctor is wanting us > > > > > > to > > > > > > start sub-Q! We are all for this, but were wondering how long the > > > process > > > > > > > > > > > takes to get started-our insurance should not be a problem as we > > > > > > did > > > not > > > > > > even need to be precertified for IvIg-weird I know! > > > > > > > > > > > > Maddie would like to get this started as soon as she can-she loves > > > the > > > > > > more active lifestyle she has gained from IvIg-but hates that last > > > part > > > > > of > > > > > > the month when she is so tired again. We thought he was going to > > > > > > take > > > her > > > > > > > > > > > off for the summer, but her numbers have continued to fall and he > > > feels > > > > > > she is better off to just stay on. > > > > > > > > > > > > Any help would be appreciated! > > > > > > > > > > > > Becky in IN-mom to Maddie-age 13-CVID-gerd, ulcers and asthma > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2009 Report Share Posted August 23, 2009 We are flex for about 2- 3 days. It just needs to be done withing a couple of days either early or late. At least that his how we have been able to keep up with things. BARBIEÂ Â From: Becky McClure <beckymcclure825@...> Subject: question about sub-q " " < > Date: Sunday, August 23, 2009, 8:13 PM Â When we started Maddie's sub-q infusions in June, we had to start on Monday because that was when home health could get here- My question is-now that school has started it would be much easier to do the infusion on Sunday evening-Mondays are very homework and activity heavy. We live in a rural area and although sub-q is portable-what middle school girls wants to go to a football game with all that stuff-and it is hard to find a place to take it all out and be sanitary etc. Would it cause a problem to switch to Sunday's? I have been swamped at work so have not had time to check with our dr-but since Maddie was one of his first that he actually prescribed sub-q for he does not always have the answers- Thanks-Becky in IN-mom to Maddie-age 13, cvid, asthma, gerd...... Quote Link to comment Share on other sites More sharing options...
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