Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 I HIGHLY recommend going to www.immunedisease.com and ordering him an Igi V therapeutic Play kit- If however, the infusion will be in the next 10 days, I think it's best to call the Gardian line (Baxter's patient program) you can find it at Mygardian.com and and explaining the situation and asking them to expedite the order (sometimes it can take up to 10 days to get your order). Igi V is a doll (little blue bear) that has Primary Immunodeficiency disease, and comes with a book all about dealing with getting infusions. He also comes with real medical supplies so your son can practice what he learns on the bear. I think it's totally fine for both you and your husband to go. Bring him his lovie, a blanket from home and stuff to do - like favorite DVD's, games etc. I would also order him the magazine from MyGardian.com - it's way for him to learn about the treatment he will be getting. Also - I'd order My IVIG book, and the ABC's of Kids Like Me. I'm also a fan of IDF's This is Our Immune System Book. I also think its a good idea for him to pick out and bring something to the nurses - it's symbolic but it will help him understand that even if he gets poked from them they are still there to help him. If you can, call ahead, ask if they have a child life department, and see if someone can be there to help him his first time. Finally - know this - it will get easier. The first few times can be hard - but it gets better. I have three kids who all get Ig - it gets better. It gets easier. Best to all of you! Dayna On Nov 22, 2010, at 7:33 PM, wrote: > Hi, > > My son will be getting his first IVIG infusion at Children's > Hospital of Philadelphia. Has anyone had an infusion there? Any > suggestions on what we should bring? Do you think it's okay if both > my husband and I go? Thanks in advance. > > Any ideas on for the first IVIG in general are greatly appreciated > too!! > > > 6yo son w/CVID > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 I HIGHLY recommend going to www.immunedisease.com and ordering him an Igi V therapeutic Play kit- If however, the infusion will be in the next 10 days, I think it's best to call the Gardian line (Baxter's patient program) you can find it at Mygardian.com and and explaining the situation and asking them to expedite the order (sometimes it can take up to 10 days to get your order). Igi V is a doll (little blue bear) that has Primary Immunodeficiency disease, and comes with a book all about dealing with getting infusions. He also comes with real medical supplies so your son can practice what he learns on the bear. I think it's totally fine for both you and your husband to go. Bring him his lovie, a blanket from home and stuff to do - like favorite DVD's, games etc. I would also order him the magazine from MyGardian.com - it's way for him to learn about the treatment he will be getting. Also - I'd order My IVIG book, and the ABC's of Kids Like Me. I'm also a fan of IDF's This is Our Immune System Book. I also think its a good idea for him to pick out and bring something to the nurses - it's symbolic but it will help him understand that even if he gets poked from them they are still there to help him. If you can, call ahead, ask if they have a child life department, and see if someone can be there to help him his first time. Finally - know this - it will get easier. The first few times can be hard - but it gets better. I have three kids who all get Ig - it gets better. It gets easier. Best to all of you! Dayna On Nov 22, 2010, at 7:33 PM, wrote: > Hi, > > My son will be getting his first IVIG infusion at Children's > Hospital of Philadelphia. Has anyone had an infusion there? Any > suggestions on what we should bring? Do you think it's okay if both > my husband and I go? Thanks in advance. > > Any ideas on for the first IVIG in general are greatly appreciated > too!! > > > 6yo son w/CVID > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi Stacey, My son is treated through CHOP and had his first two IVIG treatments there 9 years ago (wow, that time went fast!). You can absolutely both go. Bring a goodie bag of stuff he likes...things that will make him comfortable. Movies, games, blanket, etc. They do have video play stations and DVD players...I believe it is a play station 2 but call and check before hand. (I was just there last month having our Sub-Q there due to a change in brand...) They are great there and very accommodating. You will probably be there a while the first time...they will run him very slow, I am sure - so definitely pack accordingly. When my son was younger (he is 14 now), we always made IVIG day a special day. Mcs, games, etc...he actually looked forward to it after a while...I guess I spoiled him...lolol. Good luck to you!!! Kim, Mom to - 14 CVID IVIG Philadelphia Hi, My son will be getting his first IVIG infusion at Children's Hospital of Philadelphia. Has anyone had an infusion there? Any suggestions on what we should bring? Do you think it's okay if both my husband and I go? Thanks in advance. Any ideas on for the first IVIG in general are greatly appreciated too!! 6yo son w/CVID ------------------------------------------------------------------------------ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1153 / Virus Database: 424/3271 - Release Date: 11/21/10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi Stacey, My son is treated through CHOP and had his first two IVIG treatments there 9 years ago (wow, that time went fast!). You can absolutely both go. Bring a goodie bag of stuff he likes...things that will make him comfortable. Movies, games, blanket, etc. They do have video play stations and DVD players...I believe it is a play station 2 but call and check before hand. (I was just there last month having our Sub-Q there due to a change in brand...) They are great there and very accommodating. You will probably be there a while the first time...they will run him very slow, I am sure - so definitely pack accordingly. When my son was younger (he is 14 now), we always made IVIG day a special day. Mcs, games, etc...he actually looked forward to it after a while...I guess I spoiled him...lolol. Good luck to you!!! Kim, Mom to - 14 CVID IVIG Philadelphia Hi, My son will be getting his first IVIG infusion at Children's Hospital of Philadelphia. Has anyone had an infusion there? Any suggestions on what we should bring? Do you think it's okay if both my husband and I go? Thanks in advance. Any ideas on for the first IVIG in general are greatly appreciated too!! 6yo son w/CVID ------------------------------------------------------------------------------ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1153 / Virus Database: 424/3271 - Release Date: 11/21/10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2010 Report Share Posted November 22, 2010 Hi , my son e has CVID also....and he receives IVIG every two weeks....We live in New Orleans....(I don't know anything about the Children's Hospital of Philadelphia except that I've heard it has a good reputation.)  I do understand, however, how you feel right now awaiting your child's fist IVIG infusion.  I was very apprehensive...I knew he needed it, he had all the lab abnormalities that pointed to needing it, and he was sick VERY frequently. He also has other illnesses which hurt his fight against infection...he has chronic Neutropenia, for which he needs Granulocyte Colony Stimulating Factor injections three times a week....and he has Kearns Sayre syndrome.  But I was very scared of the first infusion of IVIG... (even though I'm an RN and I've administered it to patients)  I was worried my son would have a reaction or develop a bad side effect, or not tolerate it. The people on this group reallly helped me, express my concerns and ask questions.  Please prepare your son by explaining the IVIG to him on his level and the IV that will be needed to give it.....Make sure he is well hydrated, this prevents a lot of side effects (headache esp) Bring his favorite juices with ya'll...or water bottles, or whatever he likes to drink the most....if he is premedicated before with Tylenol and Benadryl (what my son gets) he may get sleepy during the infusion and not be awake to drink. Wake him up just long enough to take in a good amount of fluids and then let him sleep in between drinking. Make sure the infusion is not given too fast...my son gets his over 4 hours.  My sister and I are both present for every IVIG, I would think the policy there would be the same, that both of ya'll could be there.  Please get the Igi V Bear and learning materials from Baxter that are offered on their website and also the booklets from the IDF website. These are so helpful in explaining IVIG to your child and you too! And the Igi V Bear is so cool, he goes to IVIG each and every time with my son, it makes him feel like he has this buddy with him! The books for kids are great to explain, on their level. And they send you great material to organize your labwork, medical info etc....it's all so helpful and free! But worth a million.......please also get the " Just Like Me " magazine subscription....this is one of the best kids' magazines of any kind! Fun games, stories, info from other kids who know how it feels, and great jokes and activities.  I know you are worried, I sure was when my son first started his IVIG.....but it has made a world of difference in his life....he isn't in the ER every few weeks with high fever...we don't spend weeks at a time inpatient, he doesn't have to be on antibiotics every month anymore.  e was recently in the hospital because he needed his bone marrow biopsy done and had to have a gtube placement for supplements....a surgery resident came in coughing and sneezing, a bad cold.....e was getting his IVIG, my sister and I were talking to the resident doctor...well, my sister and I caught the darn cold and coughed and sneezed and had snotty noses for 2 weeks, but NOT e...he did not catch it! What a change!  Get ready for your son's life to change for the better...........hugs.Sue  From: <stacy171@...> Subject: IVIG Philadelphia Date: Tuesday, November 23, 2010, 1:33 AM  Hi, My son will be getting his first IVIG infusion at Children's Hospital of Philadelphia. Has anyone had an infusion there? Any suggestions on what we should bring? Do you think it's okay if both my husband and I go? Thanks in advance. Any ideas on for the first IVIG in general are greatly appreciated too!! 6yo son w/CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Thank you for all of the great ideas! I did call Baxter and order the doll and books. We had some of the information from them already but we didn't have the doll. Thank you for all of the other suggestions too ________________________________ From: Dayna Fladhammer <dfladhammer@...> Sent: Mon, November 22, 2010 8:51:15 PM Subject: Re: IVIG Philadelphia  I HIGHLY recommend going to www.immunedisease.com and ordering him an Igi V therapeutic Play kit- If however, the infusion will be in the next 10 days, I think it's best to call the Gardian line (Baxter's patient program) you can find it at Mygardian.com and and explaining the situation and asking them to expedite the order (sometimes it can take up to 10 days to get your order). Igi V is a doll (little blue bear) that has Primary Immunodeficiency disease, and comes with a book all about dealing with getting infusions. He also comes with real medical supplies so your son can practice what he learns on the bear. I think it's totally fine for both you and your husband to go. Bring him his lovie, a blanket from home and stuff to do - like favorite DVD's, games etc. I would also order him the magazine from MyGardian.com - it's way for him to learn about the treatment he will be getting. Also - I'd order My IVIG book, and the ABC's of Kids Like Me. I'm also a fan of IDF's This is Our Immune System Book. I also think its a good idea for him to pick out and bring something to the nurses - it's symbolic but it will help him understand that even if he gets poked from them they are still there to help him. If you can, call ahead, ask if they have a child life department, and see if someone can be there to help him his first time. Finally - know this - it will get easier. The first few times can be hard - but it gets better. I have three kids who all get Ig - it gets better. It gets easier. Best to all of you! Dayna On Nov 22, 2010, at 7:33 PM, wrote: > Hi, > > My son will be getting his first IVIG infusion at Children's > Hospital of Philadelphia. Has anyone had an infusion there? Any > suggestions on what we should bring? Do you think it's okay if both > my husband and I go? Thanks in advance. > > Any ideas on for the first IVIG in general are greatly appreciated > too!! > > > 6yo son w/CVID > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Hi Kim, Are you in a room with a bunch of other people or are you separated? I was curious about the DVD player & video games, so thank you for answering those questions for me. Yes, I think we will make IVIG a special day. We do that for regular laboratory blood draws too. Sometimes he'll even ask me to get his blood drawn, lol. Perhaps I spoil him too much too. But they have to deal with so much. ________________________________ From: Kim Bungay <knmb2@...> Sent: Mon, November 22, 2010 11:07:47 PM Subject: Re: IVIG Philadelphia  Hi Stacey, My son is treated through CHOP and had his first two IVIG treatments there 9 years ago (wow, that time went fast!). You can absolutely both go. Bring a goodie bag of stuff he likes...things that will make him comfortable. Movies, games, blanket, etc. They do have video play stations and DVD players...I believe it is a play station 2 but call and check before hand. (I was just there last month having our Sub-Q there due to a change in brand...) They are great there and very accommodating. You will probably be there a while the first time...they will run him very slow, I am sure - so definitely pack accordingly. When my son was younger (he is 14 now), we always made IVIG day a special day. Mcs, games, etc...he actually looked forward to it after a while...I guess I spoiled him...lolol. Good luck to you!!! Kim, Mom to - 14 CVID IVIG Philadelphia Hi, My son will be getting his first IVIG infusion at Children's Hospital of Philadelphia. Has anyone had an infusion there? Any suggestions on what we should bring? Do you think it's okay if both my husband and I go? Thanks in advance. Any ideas on for the first IVIG in general are greatly appreciated too!! 6yo son w/CVID ---------------------------------------------------------- No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1153 / Virus Database: 424/3271 - Release Date: 11/21/10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2010 Report Share Posted November 24, 2010 Sue, Thanks for all of your suggestions!! I really appreciate it. I even got a chuckle from your story about the resident. I did call for all of those resources. I think the doll will be perfect and I'm sure he'll want to bring him along too. I can't wait to get the first one over! It'll also be nice to have them done at home too. I think we'll all be a lot less stressed here at home. ________________________________ From: Sue Bordelon <sudubo@...> Sent: Mon, November 22, 2010 11:34:03 PM Subject: Re: IVIG Philadelphia  Hi , my son e has CVID also....and he receives IVIG every two weeks....We live in New Orleans....(I don't know anything about the Children's Hospital of Philadelphia except that I've heard it has a good reputation.)  I do understand, however, how you feel right now awaiting your child's fist IVIG infusion.  I was very apprehensive...I knew he needed it, he had all the lab abnormalities that pointed to needing it, and he was sick VERY frequently. He also has other illnesses which hurt his fight against infection...he has chronic Neutropenia, for which he needs Granulocyte Colony Stimulating Factor injections three times a week....and he has Kearns Sayre syndrome.  But I was very scared of the first infusion of IVIG... (even though I'm an RN and I've administered it to patients)  I was worried my son would have a reaction or develop a bad side effect, or not tolerate it. The people on this group reallly helped me, express my concerns and ask questions.  Please prepare your son by explaining the IVIG to him on his level and the IV that will be needed to give it.....Make sure he is well hydrated, this prevents a lot of side effects (headache esp) Bring his favorite juices with ya'll...or water bottles, or whatever he likes to drink the most....if he is premedicated before with Tylenol and Benadryl (what my son gets) he may get sleepy during the infusion and not be awake to drink. Wake him up just long enough to take in a good amount of fluids and then let him sleep in between drinking. Make sure the infusion is not given too fast...my son gets his over 4 hours.  My sister and I are both present for every IVIG, I would think the policy there would be the same, that both of ya'll could be there.  Please get the Igi V Bear and learning materials from Baxter that are offered on their website and also the booklets from the IDF website. These are so helpful in explaining IVIG to your child and you too! And the Igi V Bear is so cool, he goes to IVIG each and every time with my son, it makes him feel like he has this buddy with him! The books for kids are great to explain, on their level. And they send you great material to organize your labwork, medical info etc....it's all so helpful and free! But worth a million.......please also get the " Just Like Me " magazine subscription....this is one of the best kids' magazines of any kind! Fun games, stories, info from other kids who know how it feels, and great jokes and activities.  I know you are worried, I sure was when my son first started his IVIG.....but it has made a world of difference in his life....he isn't in the ER every few weeks with high fever...we don't spend weeks at a time inpatient, he doesn't have to be on antibiotics every month anymore.  e was recently in the hospital because he needed his bone marrow biopsy done and had to have a gtube placement for supplements....a surgery resident came in coughing and sneezing, a bad cold.....e was getting his IVIG, my sister and I were talking to the resident doctor...well, my sister and I caught the darn cold and coughed and sneezed and had snotty noses for 2 weeks, but NOT e...he did not catch it! What a change!  Get ready for your son's life to change for the better...........hugs.Sue  From: <stacy171@...> Subject: IVIG Philadelphia Date: Tuesday, November 23, 2010, 1:33 AM  Hi, My son will be getting his first IVIG infusion at Children's Hospital of Philadelphia. Has anyone had an infusion there? Any suggestions on what we should bring? Do you think it's okay if both my husband and I go? Thanks in advance. Any ideas on for the first IVIG in general are greatly appreciated too!! 6yo son w/CVID Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.