Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 She has CVID, why is she not on IVIG/SCIG? Is the 104 with or without Tylenol/Motrin? If without then 104 is a normal high, super high would be 106-108 where you really need to start worrying about brain damage. 104 in an immune def kid is fantastic because it means at least part of their immune system is working. If its 104 with Tylenol/Motrin on board then I would be worried and heading to the ER. I would really be pushing for IG therapy, you won't have infections like this anymore, 5 years into it and my dd is healthier then the rest of the family! ________________________________ From: hessesarah <hessesarah@...> Sent: Tue, July 26, 2011 10:57:55 AM Subject: High fevers Ok so i have posted before about my daughter Dakota who has immune issues and a mito disease,and im feeling a bit worried and frustrated with her health issues lately . So for the past 6 weeks she has had super high fevers over 104 for two to three days at a time and two of them were linked to infection , first it was a high fever for 4 days and found out she had a kidney infection than almost 3 weeks after that again really high fever for about 3 days and then nothing, another 2 weeks later and she had the coxsackies virus . I am conserned because not only does she always get fevers not always as high though but she has alot of recurrent yeast infections and thrush . We see our immunologist in september , should i address all of this to them??? sarah dakota 20 mos.( Vlcadd,hypogammaglobulinemia,fluctuating neutrophil counts,non responder to all pnuenococcals,tetanus vaccines.) aiden 5 yrs old (chronic ezema and alergies)otherwise healthy:) colorado ------------------------------------ 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. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 She has CVID, why is she not on IVIG/SCIG? Is the 104 with or without Tylenol/Motrin? If without then 104 is a normal high, super high would be 106-108 where you really need to start worrying about brain damage. 104 in an immune def kid is fantastic because it means at least part of their immune system is working. If its 104 with Tylenol/Motrin on board then I would be worried and heading to the ER. I would really be pushing for IG therapy, you won't have infections like this anymore, 5 years into it and my dd is healthier then the rest of the family! ________________________________ From: hessesarah <hessesarah@...> Sent: Tue, July 26, 2011 10:57:55 AM Subject: High fevers Ok so i have posted before about my daughter Dakota who has immune issues and a mito disease,and im feeling a bit worried and frustrated with her health issues lately . So for the past 6 weeks she has had super high fevers over 104 for two to three days at a time and two of them were linked to infection , first it was a high fever for 4 days and found out she had a kidney infection than almost 3 weeks after that again really high fever for about 3 days and then nothing, another 2 weeks later and she had the coxsackies virus . I am conserned because not only does she always get fevers not always as high though but she has alot of recurrent yeast infections and thrush . We see our immunologist in september , should i address all of this to them??? sarah dakota 20 mos.( Vlcadd,hypogammaglobulinemia,fluctuating neutrophil counts,non responder to all pnuenococcals,tetanus vaccines.) aiden 5 yrs old (chronic ezema and alergies)otherwise healthy:) colorado ------------------------------------ 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. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 Yes, I would address all of this with your immunologist. My concern would be this: mito can cause regressions with high fevers and frequent infections. I understand that immunos want to wait to see if your dd's hypogamma is transient (i.e. gets better as she gets older), but with her infections and her mito, it would make more sense (to me) to treat her with immunoglobulin now, then trial her off in a year or so to see if she can recover on her own. Another point--it is summer--what will happen in the winter? Just food for thought. BTW, my ds has had coxsackie virus twice in the past 4 months, and it takes him over a month to recover....even on Immunoglobulin Mindy, mom to seven, including , 9, CVID (Hizentra), probable mito, autism, etc in Virginia > Ok so i have posted before about my daughter Dakota who has immune issues > and a mito disease,and im feeling a bit worried and frustrated with her > health issues lately . So for the past 6 weeks she has had super high > fevers over 104 for two to three days at a time and two of them were > linked to infection , first it was a high fever for 4 days and found out > she had a kidney infection than almost 3 weeks after that again really > high fever for about 3 days and then nothing, another 2 weeks later and > she had the coxsackies virus . I am conserned because not only does she > always get fevers not always as high though but she has alot of recurrent > yeast infections and thrush . We see our immunologist in september , > should i address all of this to them??? > sarah > dakota 20 mos.( Vlcadd,hypogammaglobulinemia,fluctuating neutrophil > counts,non responder to all pnuenococcals,tetanus vaccines.) > aiden 5 yrs old (chronic ezema and alergies)otherwise healthy:) > colorado > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2011 Report Share Posted July 26, 2011 Yes, I would address all of this with your immunologist. My concern would be this: mito can cause regressions with high fevers and frequent infections. I understand that immunos want to wait to see if your dd's hypogamma is transient (i.e. gets better as she gets older), but with her infections and her mito, it would make more sense (to me) to treat her with immunoglobulin now, then trial her off in a year or so to see if she can recover on her own. Another point--it is summer--what will happen in the winter? Just food for thought. BTW, my ds has had coxsackie virus twice in the past 4 months, and it takes him over a month to recover....even on Immunoglobulin Mindy, mom to seven, including , 9, CVID (Hizentra), probable mito, autism, etc in Virginia > Ok so i have posted before about my daughter Dakota who has immune issues > and a mito disease,and im feeling a bit worried and frustrated with her > health issues lately . So for the past 6 weeks she has had super high > fevers over 104 for two to three days at a time and two of them were > linked to infection , first it was a high fever for 4 days and found out > she had a kidney infection than almost 3 weeks after that again really > high fever for about 3 days and then nothing, another 2 weeks later and > she had the coxsackies virus . I am conserned because not only does she > always get fevers not always as high though but she has alot of recurrent > yeast infections and thrush . We see our immunologist in september , > should i address all of this to them??? > sarah > dakota 20 mos.( Vlcadd,hypogammaglobulinemia,fluctuating neutrophil > counts,non responder to all pnuenococcals,tetanus vaccines.) > aiden 5 yrs old (chronic ezema and alergies)otherwise healthy:) > colorado > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2011 Report Share Posted July 27, 2011 Thank you ladies ,yes I am going to push for the replacment therapy and as to the fevers it was with both Tylenol and Motrin it would go down to 102-103 and back up again to 104 to almost 105 within 30-40 mins. She actually just started getting rash on her face 10 days after the fevers and they went away and now again with the diarrhea and yeast infection which is never ending for my poor baby girl. Dakota 20months-vlcadd and immune issues > > She has CVID, why is she not on IVIG/SCIG? Is the 104 with or without > Tylenol/Motrin? If without then 104 is a normal high, super high would be > 106-108 where you really need to start worrying about brain damage. 104 in an > immune def kid is fantastic because it means at least part of their immune > system is working. If its 104 with Tylenol/Motrin on board then I would be > worried and heading to the ER. I would really be pushing for IG therapy, you > won't have infections like this anymore, 5 years into it and my dd is healthier > then the rest of the family! > > > > > > > > ________________________________ > From: hessesarah <hessesarah@...> > > Sent: Tue, July 26, 2011 10:57:55 AM > Subject: High fevers > > Ok so i have posted before about my daughter Dakota who has immune issues and a > mito disease,and im feeling a bit worried and frustrated with her health issues > lately . So for the past 6 weeks she has had super high fevers over 104 for two > to three days at a time and two of them were linked to infection , first it was > a high fever for 4 days and found out she had a kidney infection than almost 3 > weeks after that again really high fever for about 3 days and then nothing, > another 2 weeks later and she had the coxsackies virus . I am conserned because > not only does she always get fevers not always as high though but she has alot > of recurrent yeast infections and thrush . We see our immunologist in september > , should i address all of this to them??? > sarah > dakota 20 mos.( Vlcadd,hypogammaglobulinemia,fluctuating neutrophil counts,non > responder to all pnuenococcals,tetanus vaccines.) > aiden 5 yrs old (chronic ezema and alergies)otherwise healthy:) > colorado > > > > ------------------------------------ > > 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. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages Quote Link to comment Share on other sites More sharing options...
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