Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Dear Ursula; How are you? It sounds like you had a rough day already! Do you give Macey benadryl before her I.V.? Also did your immunologist do a base line level for comparison before you started I.V.I.G.? We are waiting for Alissa's results. Also they did another bone age x-ray on her and she fell another six months behind in growth and bone density. That puts her 3 years behind for her age. I hope you do not mind all these questions. Do you have any suggestions.? Thanks I hope Macey is doing better, Alissa was a handful at three very very stubborn. Take care and thank you for sharing.. We said goodbye to two of our military friends at the airbase on their way to Kosovo. I wish this madness would end. God Bless Annette mom cvid asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: afternoon folks >Date: Mon, 17 May 1999 17:17:12 -0400 > > > >Whew this list has been busy. We have a few other new joins lately and I >hope they take this opportunity to write in and introduce themselves >alittle. We usually start out by telling alittle bit about our children, >their treatments, meds and then we brag on our families alittle. > >Amber - to help out with a couple of things, Macey receives IVIG every 3 >weeks and her top levels are around 600. While my levels (the one time >they >were tested) were 1100. Her immunologist said that sometimes people just >have low numbers but can deal ok with that. Not Macey. We have seen an >increase in her IgA and IgM numbers. even though they say that you don't >get much from the IVIG to replenish these counts I think that boosting her >IgG somehow helps to get the other going too. Macey had several >breakthrough infections when she first started getting infused. We didn't >know it at the time but she wasn't getting the right dose for her weight. >Once the dose was adjusted (literally doubled) she has done better. The >IDF >(immune deficiency foundation) Patient/Family Handbook would be a good >place >to look at what's involved with the various PID's (Primary Immune >Deficiencies). There is a link for it on the IPOPI site >http://www.ipopi.org > >Macey had the VCUG done instead of the IVP. One thing I did notice that >the >pediatric radiologist did here that was different was that they used a >feeding tube as a catheter instead of a pediatric foley cath. It worked >alot better. Since then we've used a feeding tube to do her urine cultures >every 3 months. cuts down on the swelling. Her Ultrasound was fine. >we're >also having an ultrasound done on because there is such a high >percentage of sibling's affected with kidney reflux. There are many reflux >sites on Macey's resource page. http://www.netpage.org/macey/resource.htm > >Macey's on twice daily doses of Septra. She uses it mostly for her kidney >reflux prophylactic but she was already on it before she was diagnosed with >the kidney reflux. we would rotate it and Zithromax as her PID >prophylactic. > >What medicine do they use to sedate Kelsey? Macey receives a dose of >Tylenol and one dose of Atarax (some people use Benadryl but Macey reacts >to >Benadryl). The two meds together help cut down on headaches and keeps her >on an even keel while we sit through the infusion. Sometimes I give her a >dose of Tylenol at the end too (infusion usually takes us about 5 hrs). >She >gets 10 gms Gamimmune N 10% and it runs at about 50 ml/hr. > >The Child Life Specialist at the hospital is great and truth told we really >did alot better when we had the port. Macey hates IV sticks but she was >helping us flush her port up until she lost it. Sometimes I think it's all >about control. Even in a 3 yr old. > > > > >------------------------------------------------------------------------ >With more than 14 million emails exchanged daily... >http://www.onelist.com >....ONElist IS the place where the world talks! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Dear Ursula; How are you? It sounds like you had a rough day already! Do you give Macey benadryl before her I.V.? Also did your immunologist do a base line level for comparison before you started I.V.I.G.? We are waiting for Alissa's results. Also they did another bone age x-ray on her and she fell another six months behind in growth and bone density. That puts her 3 years behind for her age. I hope you do not mind all these questions. Do you have any suggestions.? Thanks I hope Macey is doing better, Alissa was a handful at three very very stubborn. Take care and thank you for sharing.. We said goodbye to two of our military friends at the airbase on their way to Kosovo. I wish this madness would end. God Bless Annette mom cvid asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: afternoon folks >Date: Mon, 17 May 1999 17:17:12 -0400 > > > >Whew this list has been busy. We have a few other new joins lately and I >hope they take this opportunity to write in and introduce themselves >alittle. We usually start out by telling alittle bit about our children, >their treatments, meds and then we brag on our families alittle. > >Amber - to help out with a couple of things, Macey receives IVIG every 3 >weeks and her top levels are around 600. While my levels (the one time >they >were tested) were 1100. Her immunologist said that sometimes people just >have low numbers but can deal ok with that. Not Macey. We have seen an >increase in her IgA and IgM numbers. even though they say that you don't >get much from the IVIG to replenish these counts I think that boosting her >IgG somehow helps to get the other going too. Macey had several >breakthrough infections when she first started getting infused. We didn't >know it at the time but she wasn't getting the right dose for her weight. >Once the dose was adjusted (literally doubled) she has done better. The >IDF >(immune deficiency foundation) Patient/Family Handbook would be a good >place >to look at what's involved with the various PID's (Primary Immune >Deficiencies). There is a link for it on the IPOPI site >http://www.ipopi.org > >Macey had the VCUG done instead of the IVP. One thing I did notice that >the >pediatric radiologist did here that was different was that they used a >feeding tube as a catheter instead of a pediatric foley cath. It worked >alot better. Since then we've used a feeding tube to do her urine cultures >every 3 months. cuts down on the swelling. Her Ultrasound was fine. >we're >also having an ultrasound done on because there is such a high >percentage of sibling's affected with kidney reflux. There are many reflux >sites on Macey's resource page. http://www.netpage.org/macey/resource.htm > >Macey's on twice daily doses of Septra. She uses it mostly for her kidney >reflux prophylactic but she was already on it before she was diagnosed with >the kidney reflux. we would rotate it and Zithromax as her PID >prophylactic. > >What medicine do they use to sedate Kelsey? Macey receives a dose of >Tylenol and one dose of Atarax (some people use Benadryl but Macey reacts >to >Benadryl). The two meds together help cut down on headaches and keeps her >on an even keel while we sit through the infusion. Sometimes I give her a >dose of Tylenol at the end too (infusion usually takes us about 5 hrs). >She >gets 10 gms Gamimmune N 10% and it runs at about 50 ml/hr. > >The Child Life Specialist at the hospital is great and truth told we really >did alot better when we had the port. Macey hates IV sticks but she was >helping us flush her port up until she lost it. Sometimes I think it's all >about control. Even in a 3 yr old. > > > > >------------------------------------------------------------------------ >With more than 14 million emails exchanged daily... >http://www.onelist.com >....ONElist IS the place where the world talks! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Dear Ursula; How are you? It sounds like you had a rough day already! Do you give Macey benadryl before her I.V.? Also did your immunologist do a base line level for comparison before you started I.V.I.G.? We are waiting for Alissa's results. Also they did another bone age x-ray on her and she fell another six months behind in growth and bone density. That puts her 3 years behind for her age. I hope you do not mind all these questions. Do you have any suggestions.? Thanks I hope Macey is doing better, Alissa was a handful at three very very stubborn. Take care and thank you for sharing.. We said goodbye to two of our military friends at the airbase on their way to Kosovo. I wish this madness would end. God Bless Annette mom cvid asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: afternoon folks >Date: Mon, 17 May 1999 17:17:12 -0400 > > > >Whew this list has been busy. We have a few other new joins lately and I >hope they take this opportunity to write in and introduce themselves >alittle. We usually start out by telling alittle bit about our children, >their treatments, meds and then we brag on our families alittle. > >Amber - to help out with a couple of things, Macey receives IVIG every 3 >weeks and her top levels are around 600. While my levels (the one time >they >were tested) were 1100. Her immunologist said that sometimes people just >have low numbers but can deal ok with that. Not Macey. We have seen an >increase in her IgA and IgM numbers. even though they say that you don't >get much from the IVIG to replenish these counts I think that boosting her >IgG somehow helps to get the other going too. Macey had several >breakthrough infections when she first started getting infused. We didn't >know it at the time but she wasn't getting the right dose for her weight. >Once the dose was adjusted (literally doubled) she has done better. The >IDF >(immune deficiency foundation) Patient/Family Handbook would be a good >place >to look at what's involved with the various PID's (Primary Immune >Deficiencies). There is a link for it on the IPOPI site >http://www.ipopi.org > >Macey had the VCUG done instead of the IVP. One thing I did notice that >the >pediatric radiologist did here that was different was that they used a >feeding tube as a catheter instead of a pediatric foley cath. It worked >alot better. Since then we've used a feeding tube to do her urine cultures >every 3 months. cuts down on the swelling. Her Ultrasound was fine. >we're >also having an ultrasound done on because there is such a high >percentage of sibling's affected with kidney reflux. There are many reflux >sites on Macey's resource page. http://www.netpage.org/macey/resource.htm > >Macey's on twice daily doses of Septra. She uses it mostly for her kidney >reflux prophylactic but she was already on it before she was diagnosed with >the kidney reflux. we would rotate it and Zithromax as her PID >prophylactic. > >What medicine do they use to sedate Kelsey? Macey receives a dose of >Tylenol and one dose of Atarax (some people use Benadryl but Macey reacts >to >Benadryl). The two meds together help cut down on headaches and keeps her >on an even keel while we sit through the infusion. Sometimes I give her a >dose of Tylenol at the end too (infusion usually takes us about 5 hrs). >She >gets 10 gms Gamimmune N 10% and it runs at about 50 ml/hr. > >The Child Life Specialist at the hospital is great and truth told we really >did alot better when we had the port. Macey hates IV sticks but she was >helping us flush her port up until she lost it. Sometimes I think it's all >about control. Even in a 3 yr old. > > > > >------------------------------------------------------------------------ >With more than 14 million emails exchanged daily... >http://www.onelist.com >....ONElist IS the place where the world talks! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Ursula: Thanks for the reply and the offer of the photo. As for the delay in growth the endocrinologist was suppose to get back with us this week. I am sorry for Macey with the I.V.. Alissa has veins like a pipline. I hope they hold up. I wish they would put a mediport in but her immunologist was worried about infection. I have so much wonderful imput from everyone I have a list of questions including the cd-5-cd-19 dx that need to be addressed by our immunologist. Also I think its admirable that you can go to college on top of all that you do. I'm still trying to get re-certed for my EMT class. I am concerned about the bone loss and lack of growth because Alissa was dx with Axial skeletal porosis two years ago. I miss having a treatment center like National Jewish where everything is at one center. ( It spoils you very much) Take care tomorrow is shelter day. Alissa and I volunteer at the local animal shelter and also foster for them. Its great therapy in itself. God Bless and take care. I apologize for rambling long day. I also think we will register for homebound for the fall. Since she has been homebound since February we have had no infection. take care annette mom cvid asthmatic, > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: afternoon folks >Date: Mon, 17 May 1999 20:35:16 -0400 > > > >Annette , regarding the Benadryl. We give Atarax which I believe is very >similar to Benadryl. Benadryl makes Macey's face, lips, tongue and throat >swell. Not a pretty site. We give it before we leave the house. Then >after a 30 minute car ride to the hospital, waiting for the treatment room >to be ready to use, getting an IV stuck and waiting for the pharmacy to mix >the medicine (Macey's veins are so bad that they won't even mix the IVIG >until the nurse calls saying she actually was able to get and keep an IV). >So by then it's 2 hrs later. just about right for the med to start >working. > >Yes they did levels before they started treatment, what they forgot or >didn't think to do was the pneumovax. So later we did another study and >this fall did a pneumovax study. Her levels on IVIG have increased but not >as much as I thought they would. > >what have they said about the bone delay? Any treatments? Is it a concern >at the moment or a wait and see approach? Macey went almost a year without >growing and just recently added 1 inch to her height. it was very >unnerving >to get the same height at every infusion. Let us know how things go. > >Belinda - good to hear from you again. Sorry that the infusion went so >crummy. Do extra fluids help any? I'm guilty of using the same line " Lay >still Macey, Ms. Amy can't get it " . It's a problem with Macey, she hates >to >be held. Probably are sensory based. The more we focused in on the >stillness the more she could be still. Alot of the kids with PID have >pretty crappy veins and speaking from a nursing student perspective I dread >the day I have to stick a chemo or chronically ill child. Better luck with >the veins next infusion. The only place they're able to get macey right >now >is her left hand, her arms and feet are tapped. > >we filed for homebound and regular schooling last week, just in case. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I >left kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com >Â >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ >Â >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm >Â >Â > > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Ursula: Thanks for the reply and the offer of the photo. As for the delay in growth the endocrinologist was suppose to get back with us this week. I am sorry for Macey with the I.V.. Alissa has veins like a pipline. I hope they hold up. I wish they would put a mediport in but her immunologist was worried about infection. I have so much wonderful imput from everyone I have a list of questions including the cd-5-cd-19 dx that need to be addressed by our immunologist. Also I think its admirable that you can go to college on top of all that you do. I'm still trying to get re-certed for my EMT class. I am concerned about the bone loss and lack of growth because Alissa was dx with Axial skeletal porosis two years ago. I miss having a treatment center like National Jewish where everything is at one center. ( It spoils you very much) Take care tomorrow is shelter day. Alissa and I volunteer at the local animal shelter and also foster for them. Its great therapy in itself. God Bless and take care. I apologize for rambling long day. I also think we will register for homebound for the fall. Since she has been homebound since February we have had no infection. take care annette mom cvid asthmatic, > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: afternoon folks >Date: Mon, 17 May 1999 20:35:16 -0400 > > > >Annette , regarding the Benadryl. We give Atarax which I believe is very >similar to Benadryl. Benadryl makes Macey's face, lips, tongue and throat >swell. Not a pretty site. We give it before we leave the house. Then >after a 30 minute car ride to the hospital, waiting for the treatment room >to be ready to use, getting an IV stuck and waiting for the pharmacy to mix >the medicine (Macey's veins are so bad that they won't even mix the IVIG >until the nurse calls saying she actually was able to get and keep an IV). >So by then it's 2 hrs later. just about right for the med to start >working. > >Yes they did levels before they started treatment, what they forgot or >didn't think to do was the pneumovax. So later we did another study and >this fall did a pneumovax study. Her levels on IVIG have increased but not >as much as I thought they would. > >what have they said about the bone delay? Any treatments? Is it a concern >at the moment or a wait and see approach? Macey went almost a year without >growing and just recently added 1 inch to her height. it was very >unnerving >to get the same height at every infusion. Let us know how things go. > >Belinda - good to hear from you again. Sorry that the infusion went so >crummy. Do extra fluids help any? I'm guilty of using the same line " Lay >still Macey, Ms. Amy can't get it " . It's a problem with Macey, she hates >to >be held. Probably are sensory based. The more we focused in on the >stillness the more she could be still. Alot of the kids with PID have >pretty crappy veins and speaking from a nursing student perspective I dread >the day I have to stick a chemo or chronically ill child. Better luck with >the veins next infusion. The only place they're able to get macey right >now >is her left hand, her arms and feet are tapped. > >we filed for homebound and regular schooling last week, just in case. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I >left kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com >Â >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ >Â >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm >Â >Â > > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Ursula: Thanks for the reply and the offer of the photo. As for the delay in growth the endocrinologist was suppose to get back with us this week. I am sorry for Macey with the I.V.. Alissa has veins like a pipline. I hope they hold up. I wish they would put a mediport in but her immunologist was worried about infection. I have so much wonderful imput from everyone I have a list of questions including the cd-5-cd-19 dx that need to be addressed by our immunologist. Also I think its admirable that you can go to college on top of all that you do. I'm still trying to get re-certed for my EMT class. I am concerned about the bone loss and lack of growth because Alissa was dx with Axial skeletal porosis two years ago. I miss having a treatment center like National Jewish where everything is at one center. ( It spoils you very much) Take care tomorrow is shelter day. Alissa and I volunteer at the local animal shelter and also foster for them. Its great therapy in itself. God Bless and take care. I apologize for rambling long day. I also think we will register for homebound for the fall. Since she has been homebound since February we have had no infection. take care annette mom cvid asthmatic, > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: afternoon folks >Date: Mon, 17 May 1999 20:35:16 -0400 > > > >Annette , regarding the Benadryl. We give Atarax which I believe is very >similar to Benadryl. Benadryl makes Macey's face, lips, tongue and throat >swell. Not a pretty site. We give it before we leave the house. Then >after a 30 minute car ride to the hospital, waiting for the treatment room >to be ready to use, getting an IV stuck and waiting for the pharmacy to mix >the medicine (Macey's veins are so bad that they won't even mix the IVIG >until the nurse calls saying she actually was able to get and keep an IV). >So by then it's 2 hrs later. just about right for the med to start >working. > >Yes they did levels before they started treatment, what they forgot or >didn't think to do was the pneumovax. So later we did another study and >this fall did a pneumovax study. Her levels on IVIG have increased but not >as much as I thought they would. > >what have they said about the bone delay? Any treatments? Is it a concern >at the moment or a wait and see approach? Macey went almost a year without >growing and just recently added 1 inch to her height. it was very >unnerving >to get the same height at every infusion. Let us know how things go. > >Belinda - good to hear from you again. Sorry that the infusion went so >crummy. Do extra fluids help any? I'm guilty of using the same line " Lay >still Macey, Ms. Amy can't get it " . It's a problem with Macey, she hates >to >be held. Probably are sensory based. The more we focused in on the >stillness the more she could be still. Alot of the kids with PID have >pretty crappy veins and speaking from a nursing student perspective I dread >the day I have to stick a chemo or chronically ill child. Better luck with >the veins next infusion. The only place they're able to get macey right >now >is her left hand, her arms and feet are tapped. > >we filed for homebound and regular schooling last week, just in case. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I >left kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com >Â >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ >Â >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm >Â >Â > > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Whew this list has been busy. We have a few other new joins lately and I hope they take this opportunity to write in and introduce themselves alittle. We usually start out by telling alittle bit about our children, their treatments, meds and then we brag on our families alittle. Amber - to help out with a couple of things, Macey receives IVIG every 3 weeks and her top levels are around 600. While my levels (the one time they were tested) were 1100. Her immunologist said that sometimes people just have low numbers but can deal ok with that. Not Macey. We have seen an increase in her IgA and IgM numbers. even though they say that you don't get much from the IVIG to replenish these counts I think that boosting her IgG somehow helps to get the other going too. Macey had several breakthrough infections when she first started getting infused. We didn't know it at the time but she wasn't getting the right dose for her weight. Once the dose was adjusted (literally doubled) she has done better. The IDF (immune deficiency foundation) Patient/Family Handbook would be a good place to look at what's involved with the various PID's (Primary Immune Deficiencies). There is a link for it on the IPOPI site http://www.ipopi.org Macey had the VCUG done instead of the IVP. One thing I did notice that the pediatric radiologist did here that was different was that they used a feeding tube as a catheter instead of a pediatric foley cath. It worked alot better. Since then we've used a feeding tube to do her urine cultures every 3 months. cuts down on the swelling. Her Ultrasound was fine. we're also having an ultrasound done on because there is such a high percentage of sibling's affected with kidney reflux. There are many reflux sites on Macey's resource page. http://www.netpage.org/macey/resource.htm Macey's on twice daily doses of Septra. She uses it mostly for her kidney reflux prophylactic but she was already on it before she was diagnosed with the kidney reflux. we would rotate it and Zithromax as her PID prophylactic. What medicine do they use to sedate Kelsey? Macey receives a dose of Tylenol and one dose of Atarax (some people use Benadryl but Macey reacts to Benadryl). The two meds together help cut down on headaches and keeps her on an even keel while we sit through the infusion. Sometimes I give her a dose of Tylenol at the end too (infusion usually takes us about 5 hrs). She gets 10 gms Gamimmune N 10% and it runs at about 50 ml/hr. The Child Life Specialist at the hospital is great and truth told we really did alot better when we had the port. Macey hates IV sticks but she was helping us flush her port up until she lost it. Sometimes I think it's all about control. Even in a 3 yr old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Annette , regarding the Benadryl. We give Atarax which I believe is very similar to Benadryl. Benadryl makes Macey's face, lips, tongue and throat swell. Not a pretty site. We give it before we leave the house. Then after a 30 minute car ride to the hospital, waiting for the treatment room to be ready to use, getting an IV stuck and waiting for the pharmacy to mix the medicine (Macey's veins are so bad that they won't even mix the IVIG until the nurse calls saying she actually was able to get and keep an IV). So by then it's 2 hrs later. just about right for the med to start working. Yes they did levels before they started treatment, what they forgot or didn't think to do was the pneumovax. So later we did another study and this fall did a pneumovax study. Her levels on IVIG have increased but not as much as I thought they would. what have they said about the bone delay? Any treatments? Is it a concern at the moment or a wait and see approach? Macey went almost a year without growing and just recently added 1 inch to her height. it was very unnerving to get the same height at every infusion. Let us know how things go. Belinda - good to hear from you again. Sorry that the infusion went so crummy. Do extra fluids help any? I'm guilty of using the same line " Lay still Macey, Ms. Amy can't get it " . It's a problem with Macey, she hates to be held. Probably are sensory based. The more we focused in on the stillness the more she could be still. Alot of the kids with PID have pretty crappy veins and speaking from a nursing student perspective I dread the day I have to stick a chemo or chronically ill child. Better luck with the veins next infusion. The only place they're able to get macey right now is her left hand, her arms and feet are tapped. we filed for homebound and regular schooling last week, just in case. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Quote Link to comment Share on other sites More sharing options...
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