Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Well Cambrie had her second IVIG on wednesday...a few days later she started spiking temps (but they said that was normal). however it is Monday now and she is congested, vomitting, and coughing up brown sputum...we've spoken with her GI and her Pulmonologist and both say well, if she gets worse, bring her in. But, I just hate the waiting game, you always have to wait until it " gets worse " ... She's had a wet nasty cough for months now, it never goes away... It's just a bummer. I really hope the IVIG starts working soon. I know it can take up to several months...we're just so close to flu season, it's scary. They've also had her on antibiotics for months now, no change. It's almost like her body doesn't even know there's antibiotics in there. Craziness...just needed to vent, sorry Kymberlie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 Kymberlie, I can remember the frustration! just stayed sick at first. And then one day, I realized that he wasn't anymore. Or I would notice that his sister was sick...but he wasn't! We have been getting IgG's through IVIG or SubQ for 2 years now. Last year everyone in the family had the flu for 2 weeks, except . Yes, he gets one or two colds a year, but it's like a normal person's cold. He gets over it in a normal time. Good luck and hang in there, @...: kymberlietyson@...: Tue, 11 Nov 2008 01:29:08 +0000Subject: After the 2nd IVIG Well Cambrie had her second IVIG on wednesday...a few days later she started spiking temps (but they said that was normal). however it is Monday now and she is congested, vomitting, and coughing up brown sputum...we've spoken with her GI and her Pulmonologist and both say well, if she gets worse, bring her in. But, I just hate the waiting game, you always have to wait until it " gets worse " ... She's had a wet nasty cough for months now, it never goes away... It's just a bummer. I really hope the IVIG starts working soon. I know it can take up to several months...we're just so close to flu season, it's scary. They've also had her on antibiotics for months now, no change. It's almost like her body doesn't even know there's antibiotics in there. Craziness...just needed to vent, sorry Kymberlie _________________________________________________________________ Windows Live Hotmail now works up to 70% faster. http://windowslive.com/Explore/Hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_faster_1120\ 08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 I can not wait until that day comes!!! > > > Kymberlie, > > I can remember the frustration! just stayed sick at first. And then one day, I realized that he wasn't anymore. Or I would notice that his sister was sick...but he wasn't! We have been getting IgG's through IVIG or SubQ for 2 years now. Last year everyone in the family had the flu for 2 weeks, except . Yes, he gets one or two colds a year, but it's like a normal person's cold. He gets over it in a normal time. Good luck and hang in there, > > > > @...: kymberlietyson@...: Tue, 11 Nov 2008 01:29:08 +0000Subject: After the 2nd IVIG > > > > Well Cambrie had her second IVIG on wednesday...a few days later she started spiking temps (but they said that was normal). however it is Monday now and she is congested, vomitting, and coughing up brown sputum...we've spoken with her GI and her Pulmonologist and both say well, if she gets worse, bring her in. But, I just hate the waiting game, you always have to wait until it " gets worse " ... She's had a wet nasty cough for months now, it never goes away... It's just a bummer. I really hope the IVIG starts working soon. I know it can take up to several months...we're just so close to flu season, it's scary. They've also had her on antibiotics for months now, no change. It's almost like her body doesn't even know there's antibiotics in there. Craziness...just needed to vent, sorry Kymberlie > > > > > > _________________________________________________________________ > Windows Live Hotmail now works up to 70% faster. > http://windowslive.com/Explore/Hotmail? ocid=TXT_TAGLM_WL_hotmail_acq_faster_112008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2008 Report Share Posted November 10, 2008 It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. BARBIE ________________________________ From: kymberlietyson <kymberlietyson@...> Sent: Monday, November 10, 2008 7:29:08 PM Subject: After the 2nd IVIG Well Cambrie had her second IVIG on wednesday... a few days later she started spiking temps (but they said that was normal). however it is Monday now and she is congested, vomitting, and coughing up brown sputum...we' ve spoken with her GI and her Pulmonologist and both say well, if she gets worse, bring her in. But, I just hate the waiting game, you always have to wait until it " gets worse " ... She's had a wet nasty cough for months now, it never goes away... It's just a bummer. I really hope the IVIG starts working soon. I know it can take up to several months...we' re just so close to flu season, it's scary. They've also had her on antibiotics for months now, no change. It's almost like her body doesn't even know there's antibiotics in there. Craziness... just needed to vent, sorry Kymberlie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 She is miserable...we all are ...however, she's already on two antibiotics and saline washes...we'll see her pulmonologist next week if we can make it that long. She's also only a year old. I may have to take her in if she keeps getting worse. I feel like sometimes we leave from the doctor's office with more than we came with if you know what I mean! Kymberlie > > It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. > > BARBIE > > > > > ________________________________ > From: kymberlietyson <kymberlietyson@...> > > Sent: Monday, November 10, 2008 7:29:08 PM > Subject: After the 2nd IVIG > > > Well Cambrie had her second IVIG on wednesday... a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we' ve spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we' re just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness... just needed to vent, sorry > Kymberlie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 She is miserable...we all are ...however, she's already on two antibiotics and saline washes...we'll see her pulmonologist next week if we can make it that long. She's also only a year old. I may have to take her in if she keeps getting worse. I feel like sometimes we leave from the doctor's office with more than we came with if you know what I mean! Kymberlie > > It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. > > BARBIE > > > > > ________________________________ > From: kymberlietyson <kymberlietyson@...> > > Sent: Monday, November 10, 2008 7:29:08 PM > Subject: After the 2nd IVIG > > > Well Cambrie had her second IVIG on wednesday... a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we' ve spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we' re just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness... just needed to vent, sorry > Kymberlie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 From what I am hearing I would take her in sooner. She sounds like a sick little girl. May need a boost of steroids or IV antibioitics to get some of the inflammation down. I am so sorry. But do not wait too long with the fever and vomiting her chances of becoming dehydrated are high. OH do I remember so well. I can promise you that the Gamma globulin will work but will take more time. BARBIE ________________________________ From: kymberlietyson <kymberlietyson@...> Sent: Tuesday, November 11, 2008 11:55:40 AM Subject: Re: After the 2nd IVIG She is miserable... we all are ...however, she's already on two antibiotics and saline washes...we' ll see her pulmonologist next week if we can make it that long. She's also only a year old. I may have to take her in if she keeps getting worse. I feel like sometimes we leave from the doctor's office with more than we came with if you know what I mean! Kymberlie > > It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. > > BARBIE > > > > > ____________ _________ _________ __ > From: kymberlietyson <kymberlietyson@ ...> > groups (DOT) com > Sent: Monday, November 10, 2008 7:29:08 PM > Subject: After the 2nd IVIG > > > Well Cambrie had her second IVIG on wednesday... a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we' ve spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we' re just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness... just needed to vent, sorry > Kymberlie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Also have they cultured anything??? Sometimes doctors ASS U ME that it is viral but these kids they can get some odd bugs and can be really hard to get rid of. My son was on antibioitics non-stop for over 3 1/2 years. I think we had a 10 day break in July every year before it would start again. But he is now 12 and had been on gamma globulin since he was 3 either IV or Sub Q and has only had one antibioitic this YEAR!!! so she will get better. BARBIE ________________________________ From: kymberlietyson <kymberlietyson@...> Sent: Tuesday, November 11, 2008 11:55:40 AM Subject: Re: After the 2nd IVIG She is miserable... we all are ...however, she's already on two antibiotics and saline washes...we' ll see her pulmonologist next week if we can make it that long. She's also only a year old. I may have to take her in if she keeps getting worse. I feel like sometimes we leave from the doctor's office with more than we came with if you know what I mean! Kymberlie > > It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. > > BARBIE > > > > > ____________ _________ _________ __ > From: kymberlietyson <kymberlietyson@ ...> > groups (DOT) com > Sent: Monday, November 10, 2008 7:29:08 PM > Subject: After the 2nd IVIG > > > Well Cambrie had her second IVIG on wednesday... a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we' ve spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we' re just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness... just needed to vent, sorry > Kymberlie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Also have they cultured anything??? Sometimes doctors ASS U ME that it is viral but these kids they can get some odd bugs and can be really hard to get rid of. My son was on antibioitics non-stop for over 3 1/2 years. I think we had a 10 day break in July every year before it would start again. But he is now 12 and had been on gamma globulin since he was 3 either IV or Sub Q and has only had one antibioitic this YEAR!!! so she will get better. BARBIE ________________________________ From: kymberlietyson <kymberlietyson@...> Sent: Tuesday, November 11, 2008 11:55:40 AM Subject: Re: After the 2nd IVIG She is miserable... we all are ...however, she's already on two antibiotics and saline washes...we' ll see her pulmonologist next week if we can make it that long. She's also only a year old. I may have to take her in if she keeps getting worse. I feel like sometimes we leave from the doctor's office with more than we came with if you know what I mean! Kymberlie > > It sounds like she must be miserable. Sounds like she is getting worse. IVIg does take several months to help the immune system moderate. But she sounds like she needs some intervention. I know that my son would throw up when he had a bad sinus infection and it would drain in his stomach and then he would cough and bring it up. Has she seen an ENT recently? Maybe she needs a good sinus, adenoid cleanout to get her started on the road. Sometimes that stuff just cannot clear out on its own. Are you using any kind of sinus rinses for her?? It makes such a difference. I would be concerned about the temps continuing. A temp with IVIg is for the first maybe 72 hours but otherwise it is generally not related. I would take her in to your PED or to an ENT ASAP> She sounds pretty sick. Three year olds can get pretty dehydrated with what you have going on and probably needs some interventions. > > BARBIE > > > > > ____________ _________ _________ __ > From: kymberlietyson <kymberlietyson@ ...> > groups (DOT) com > Sent: Monday, November 10, 2008 7:29:08 PM > Subject: After the 2nd IVIG > > > Well Cambrie had her second IVIG on wednesday... a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we' ve spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we' re just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness... just needed to vent, sorry > Kymberlie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 --- Has cambrie ever had a bronchoscopy? I was wondering, bc if she has had this infection in the lungs for this long, maybe they just need to get in their, clean it out and culture it....could be she's n ot on the right antibiotic to work. We experienced this. My daughter kept getting sicker and sicker....with her lungs/asthma/infections. Finally, our pulmo did a bronch and cultured it....it was a very nasty H.Flu infection, so nasty, her lungs had blood in them(coughing up brown stuff could be blood). It turned out that while she had been on abx, she hadnt been on the RIGHT abx for that particular infection. IVIG will help. But, even " normal " kids need abx soemtimes......IVIG wont cure a bacterial infection, if that is what she has. It will just help fight it. valarie In , " kymberlietyson " <kymberlietyson@...> wrote: > > Well Cambrie had her second IVIG on wednesday...a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we've spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we're just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness...just needed to vent, sorry > Kymberlie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 --- Has cambrie ever had a bronchoscopy? I was wondering, bc if she has had this infection in the lungs for this long, maybe they just need to get in their, clean it out and culture it....could be she's n ot on the right antibiotic to work. We experienced this. My daughter kept getting sicker and sicker....with her lungs/asthma/infections. Finally, our pulmo did a bronch and cultured it....it was a very nasty H.Flu infection, so nasty, her lungs had blood in them(coughing up brown stuff could be blood). It turned out that while she had been on abx, she hadnt been on the RIGHT abx for that particular infection. IVIG will help. But, even " normal " kids need abx soemtimes......IVIG wont cure a bacterial infection, if that is what she has. It will just help fight it. valarie In , " kymberlietyson " <kymberlietyson@...> wrote: > > Well Cambrie had her second IVIG on wednesday...a few days later she > started spiking temps (but they said that was normal). however it is > Monday now and she is congested, vomitting, and coughing up brown > sputum...we've spoken with her GI and her Pulmonologist and both say > well, if she gets worse, bring her in. But, I just hate the waiting > game, you always have to wait until it " gets worse " ... She's had a wet > nasty cough for months now, it never goes away... It's just a bummer. I > really hope the IVIG starts working soon. I know it can take up to > several months...we're just so close to flu season, it's scary. They've > also had her on antibiotics for months now, no change. It's almost like > her body doesn't even know there's antibiotics in there. > Craziness...just needed to vent, sorry > Kymberlie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 She had a bronchscopy in late August. It cultured out Neisseria, HFlu, Strep Pneumoniae, and Pseudomonas. We've been on antibiotics since then...every throat culture we've had done in between has come back positive for something or another. They had mentioned at her last visit the possibility of another bronch, but were trying to hold out and not have to do one so close together. It may be in the future. They called her in some more antibiotics and steroids today. We see the pulmonologist next Thursday, I'm assuming he'll decide something then...I just feel really bad for her... Kymberlie > > > > Well Cambrie had her second IVIG on wednesday...a few days later she > > started spiking temps (but they said that was normal). however it is > > Monday now and she is congested, vomitting, and coughing up brown > > sputum...we've spoken with her GI and her Pulmonologist and both say > > well, if she gets worse, bring her in. But, I just hate the waiting > > game, you always have to wait until it " gets worse " ... She's had a wet > > nasty cough for months now, it never goes away... It's just a bummer. I > > really hope the IVIG starts working soon. I know it can take up to > > several months...we're just so close to flu season, it's scary. They've > > also had her on antibiotics for months now, no change. It's almost like > > her body doesn't even know there's antibiotics in there. > > Craziness...just needed to vent, sorry > > Kymberlie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 She had a bronchscopy in late August. It cultured out Neisseria, HFlu, Strep Pneumoniae, and Pseudomonas. We've been on antibiotics since then...every throat culture we've had done in between has come back positive for something or another. They had mentioned at her last visit the possibility of another bronch, but were trying to hold out and not have to do one so close together. It may be in the future. They called her in some more antibiotics and steroids today. We see the pulmonologist next Thursday, I'm assuming he'll decide something then...I just feel really bad for her... Kymberlie > > > > Well Cambrie had her second IVIG on wednesday...a few days later she > > started spiking temps (but they said that was normal). however it is > > Monday now and she is congested, vomitting, and coughing up brown > > sputum...we've spoken with her GI and her Pulmonologist and both say > > well, if she gets worse, bring her in. But, I just hate the waiting > > game, you always have to wait until it " gets worse " ... She's had a wet > > nasty cough for months now, it never goes away... It's just a bummer. I > > really hope the IVIG starts working soon. I know it can take up to > > several months...we're just so close to flu season, it's scary. They've > > also had her on antibiotics for months now, no change. It's almost like > > her body doesn't even know there's antibiotics in there. > > Craziness...just needed to vent, sorry > > Kymberlie > > > Quote Link to comment Share on other sites More sharing options...
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