Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hi. I have 3 kids with immunodeficiency, and they were constantly on antibiotics until they started IVIG. This has helped them a LOT, their IGG levels are more normal, and they get sick much less often, so they need antibiotics much less often. Before they started infusions, they were always on prophylactic antibiotics! This might be an option for your son, has your dr. mentioned trying it? valarie mom to 3 w/cvid > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hi. I have 3 kids with immunodeficiency, and they were constantly on antibiotics until they started IVIG. This has helped them a LOT, their IGG levels are more normal, and they get sick much less often, so they need antibiotics much less often. Before they started infusions, they were always on prophylactic antibiotics! This might be an option for your son, has your dr. mentioned trying it? valarie mom to 3 w/cvid > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hi and welcome to the group. Your son has many complex problems and each plays into the other in different ways. I don't think any of us can really tell you what the options are for your son, but we can definately provide support for you. The one suggestion that I would offer is to strongly reccommend that you make certain your Immunologist, Gastroenterologist and endocrinologist are all talking to eachother in order to have your sons best interests at heart. It is all too easy for them to separate the issues and, in the end, it is your child that will suffer the consequences of the lack of communication. If they are all in the same facility, ask them to consult with eachother. If this does not work, find out what other options there are to get them to communicate. They need to work together, as a team, to offer your son the highest quality of life. Terri Mom and both daughters, 9 and 11 Combined Immune Deficiency > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hi and welcome to the group. Your son has many complex problems and each plays into the other in different ways. I don't think any of us can really tell you what the options are for your son, but we can definately provide support for you. The one suggestion that I would offer is to strongly reccommend that you make certain your Immunologist, Gastroenterologist and endocrinologist are all talking to eachother in order to have your sons best interests at heart. It is all too easy for them to separate the issues and, in the end, it is your child that will suffer the consequences of the lack of communication. If they are all in the same facility, ask them to consult with eachother. If this does not work, find out what other options there are to get them to communicate. They need to work together, as a team, to offer your son the highest quality of life. Terri Mom and both daughters, 9 and 11 Combined Immune Deficiency > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hello~ I have a son 4 yrs old with Brutons agammaglobulonemia. He started out with the Brutons rearing its ugly head through many issues starting at about 6 months old... but at 18 months old had ulcerated colitis. Has your son been checked for that? We had diarreah all the time, blood, toxic sometimes, many frequent diapers, etc... just a thought. But i totally agree wiith Terri below because it is imperative for you to be the one to keep all of these Dr's connected and to remind them to talk. There isn't anyone else that becomes the childs advocate... You are the best one to be the childs advocate to make sure they are doing the right things in the best interest of your child and keeping them connected. It is so hard sometimes and exhausting... especially when you are new to it and then you have so many complex issues you are dealing with at the same time. Getting IV infusions of IgG every 4 weeks has changed our lives and most definitely his to great compared to where we were. I was afraid, scared at first about the infusions, but would do it in a heart beat if i had to start it all over again. (those are just my personal feelings) This group has been a great help to me as I am sure it will to you. Take care and best wishes, Terri mom to 4 Brutons XLA From: cerdaclan@... Date: Mon, 27 Feb 2012 16:18:14 +0000 Subject: Re: New- lots of questions Hi and welcome to the group. Your son has many complex problems and each plays into the other in different ways. I don't think any of us can really tell you what the options are for your son, but we can definately provide support for you. The one suggestion that I would offer is to strongly reccommend that you make certain your Immunologist, Gastroenterologist and endocrinologist are all talking to eachother in order to have your sons best interests at heart. It is all too easy for them to separate the issues and, in the end, it is your child that will suffer the consequences of the lack of communication. If they are all in the same facility, ask them to consult with eachother. If this does not work, find out what other options there are to get them to communicate. They need to work together, as a team, to offer your son the highest quality of life. Terri Mom and both daughters, 9 and 11 Combined Immune Deficiency > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Hello~ I have a son 4 yrs old with Brutons agammaglobulonemia. He started out with the Brutons rearing its ugly head through many issues starting at about 6 months old... but at 18 months old had ulcerated colitis. Has your son been checked for that? We had diarreah all the time, blood, toxic sometimes, many frequent diapers, etc... just a thought. But i totally agree wiith Terri below because it is imperative for you to be the one to keep all of these Dr's connected and to remind them to talk. There isn't anyone else that becomes the childs advocate... You are the best one to be the childs advocate to make sure they are doing the right things in the best interest of your child and keeping them connected. It is so hard sometimes and exhausting... especially when you are new to it and then you have so many complex issues you are dealing with at the same time. Getting IV infusions of IgG every 4 weeks has changed our lives and most definitely his to great compared to where we were. I was afraid, scared at first about the infusions, but would do it in a heart beat if i had to start it all over again. (those are just my personal feelings) This group has been a great help to me as I am sure it will to you. Take care and best wishes, Terri mom to 4 Brutons XLA From: cerdaclan@... Date: Mon, 27 Feb 2012 16:18:14 +0000 Subject: Re: New- lots of questions Hi and welcome to the group. Your son has many complex problems and each plays into the other in different ways. I don't think any of us can really tell you what the options are for your son, but we can definately provide support for you. The one suggestion that I would offer is to strongly reccommend that you make certain your Immunologist, Gastroenterologist and endocrinologist are all talking to eachother in order to have your sons best interests at heart. It is all too easy for them to separate the issues and, in the end, it is your child that will suffer the consequences of the lack of communication. If they are all in the same facility, ask them to consult with eachother. If this does not work, find out what other options there are to get them to communicate. They need to work together, as a team, to offer your son the highest quality of life. Terri Mom and both daughters, 9 and 11 Combined Immune Deficiency > > Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2012 Report Share Posted February 27, 2012 Thanks for the replies! His immuno hasn't mentioned IVIG yet, but he did say prophylactic antibiotics are not an option, now. I don't really know what else there is, and my son has been sick non stop. I am so glad to have found this group! His GI (he has two right now!) is investigating the diarrhea, because of all the antibiotics he's been on she thinks it's c diff in spite of two negative cultures, so before we do the scopes and biopsies we are treating him with a round of flagyl. So far it's done nothing. As far as his specialists coordinating care, his one GI, endo. and many of his other specialists work in the same hospital, they all share info with each other. His other GI is in a different state and shares info with his pediatrician and immuno. And the immuno shares info with both GIs and the pediatrician. I am the one that does most of the coordinating, I can't even say how many release forms I've signed by now! I do wish there was a better system, but we have too many Drs on board. Today he had his levels re-drawn, so now I am super anxious to hear the results. On Feb 27, 2012, at 11:57 AM, Terri Cahill <terric2000@...> wrote: > > > Hello~ I have a son 4 yrs old with Brutons agammaglobulonemia. He started out with the Brutons rearing its ugly head through many issues starting at about 6 months old... but at 18 months old had ulcerated colitis. Has your son been checked for that? We had diarreah all the time, blood, toxic sometimes, many frequent diapers, etc... just a thought. But i totally agree wiith Terri below because it is imperative for you to be the one to keep all of these Dr's connected and to remind them to talk. There isn't anyone else that becomes the childs advocate... You are the best one to be the childs advocate to make sure they are doing the right things in the best interest of your child and keeping them connected. It is so hard sometimes and exhausting... especially when you are new to it and then you have so many complex issues you are dealing with at the same time. Getting IV infusions of IgG every 4 weeks has changed our lives and most definitely his to great compared to where we were. I was afraid, scared at first about the infusions, but would do it in a heart beat if i had to start it all over again. (those are just my personal feelings) This group has been a great help to me as I am sure it will to you. Take care and best wishes, Terri mom to 4 Brutons XLA > From: cerdaclan@... > Date: Mon, 27 Feb 2012 16:18:14 +0000 > Subject: Re: New- lots of questions > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi and welcome to the group. > > > > Your son has many complex problems and each plays into the other in different ways. I don't think any of us can really tell you what the options are for your son, but we can definately provide support for you. The one suggestion that I would offer is to strongly reccommend that you make certain your Immunologist, Gastroenterologist and endocrinologist are all talking to eachother in order to have your sons best interests at heart. It is all too easy for them to separate the issues and, in the end, it is your child that will suffer the consequences of the lack of communication. If they are all in the same facility, ask them to consult with eachother. If this does not work, find out what other options there are to get them to communicate. They need to work together, as a team, to offer your son the highest quality of life. > > > > Terri > > Mom and both daughters, 9 and 11 Combined Immune Deficiency > > > >> > >> Hello, my name is and I am mom to Riley, age 5. Riley has lots of health issues : congenital brain abnormalities, developmental delays, epilepsy, reflux, eosinophilic esophagitis, chronic diarrhea, hypothyroidism, ketotic hypoglycemia, hypotonia, growth hormone deficiency, allergies (environmental, foods and animals), asthma, chronic sinusitis, atopic dermatitis, dermographism and then his immune deficiency. He is also completely tube fed. His total igG is low and his pneumococcal titer is 0. His immuno hasn't diagnosed what its called yet, but his chart says hypogammaglobulinemia. He got his pneumovax about a month ago, and he goes tomorrow to see if his levels have gone up. He just had a sick visit with his immuno. on Friday and he told me we need to stop giving him antibiotics because of the damage it's doing to his stomach (backstory: since august he's been on antibiotics more than he's been off, his infections are usually a flare of chronic sinusitis then he will get bronchitis, pneumonia or an ear infection. Twice he's had staph.). He has chronic diarrhea (sometimes bloody) that we are assuming is because of the antibiotics, but his GI is investigating it. He has tested negative for c diff twice. Anyways, his immuno tells me we need to stop giving him antibiotics, so what are we supposed to do to treat his infections? Also, when we first discussed his labs he said that we may just do prophylactic antibiotics, but now he says that is not an option because of his stomach. I'm trying really hard to understand this stuff, but it doesn't make sense. We are also waiting for his next endoscopy to do a ciliary biopsy. Is there anything I am overlooking? > >> > >> > >> > > > > > > > > > > > > > > > > > > > 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.