Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 Ok so i went to my daughters genetics apointment and i found out that the hemotologist diagnosed her w/ hypogammaglobulinemia . So she has nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is or if it is several different ones but i am waiting for the immunologist to call me back because she couldnt get us in for an appointment and they are reviewing her case. sarah Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to vacc titers etc.... colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 keep in mind that she is only 15 months. My son was diagnosed at about this age but they also wanted to wait until he was about 3 or 4 before the final diagnosis. We did repeated challenges ( Pneumovax until that age) to see if he was still building antibodies. I would be looking at your family history and others with other immune or Autoimmune diseases to support the overall diagnosis. My son was adopted so we did not have that supportive info. So basically do not be surprised if they want to wait to start treatment or that they start and then stop it and retest to see if her system has kicked in. Some doctors believe that waiting allows her immune system to kick in better than treating early especially if she has not had a life threatening infection but more chronic infections. . BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, March 11, 2011 10:17:56 AM Subject: Re: Hypogammaglobulinemia Sounds like classic CVID, treatment is IVIG. It can be a scary prospect at 1st but it will really slow down the rate of illness and keep her from getting so sick all the time. Illness + FOD is a scary thing and treating the CVID will help big time. I will say you might want to get her switched to the sub-q method (you do at home weekly) as soon as possible if you go the IG route so you can avoid picking up more germs in the hospital and risking crisis with the VLCAD. (I know you from the FOD group:) ________________________________ From: hessesarah <hessesarah@...> Sent: Fri, March 11, 2011 9:51:24 AM Subject: Hypogammaglobulinemia Ok so i went to my daughters genetics apointment and i found out that the hemotologist diagnosed her w/ hypogammaglobulinemia . So she has nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is or if it is several different ones but i am waiting for the immunologist to call me back because she couldnt get us in for an appointment and they are reviewing her case. sarah Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to vacc titers etc.... 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 March 11, 2011 Report Share Posted March 11, 2011 keep in mind that she is only 15 months. My son was diagnosed at about this age but they also wanted to wait until he was about 3 or 4 before the final diagnosis. We did repeated challenges ( Pneumovax until that age) to see if he was still building antibodies. I would be looking at your family history and others with other immune or Autoimmune diseases to support the overall diagnosis. My son was adopted so we did not have that supportive info. So basically do not be surprised if they want to wait to start treatment or that they start and then stop it and retest to see if her system has kicked in. Some doctors believe that waiting allows her immune system to kick in better than treating early especially if she has not had a life threatening infection but more chronic infections. . BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, March 11, 2011 10:17:56 AM Subject: Re: Hypogammaglobulinemia Sounds like classic CVID, treatment is IVIG. It can be a scary prospect at 1st but it will really slow down the rate of illness and keep her from getting so sick all the time. Illness + FOD is a scary thing and treating the CVID will help big time. I will say you might want to get her switched to the sub-q method (you do at home weekly) as soon as possible if you go the IG route so you can avoid picking up more germs in the hospital and risking crisis with the VLCAD. (I know you from the FOD group:) ________________________________ From: hessesarah <hessesarah@...> Sent: Fri, March 11, 2011 9:51:24 AM Subject: Hypogammaglobulinemia Ok so i went to my daughters genetics apointment and i found out that the hemotologist diagnosed her w/ hypogammaglobulinemia . So she has nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is or if it is several different ones but i am waiting for the immunologist to call me back because she couldnt get us in for an appointment and they are reviewing her case. sarah Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to vacc titers etc.... 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 March 11, 2011 Report Share Posted March 11, 2011 I would be surprised if they wait, the child has VLCAD which mean fasting is deadly as can bodily stress be. They have to be put in the hospital on D10 IV drips anytime they get sick and stop eating/drinking so even a minor cold can be dangerous if they don't feel like eating or drinking for more then a few hours. Their not able to burn ketones for energy as they don't produce them so once the glucose they ate runs out their bodies shut down, they literally run out of fuel. I can't see them waiting to start treatment when the risk to getting sick is so high. ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Fri, March 11, 2011 10:31:48 AM Subject: Re: Hypogammaglobulinemia keep in mind that she is only 15 months. My son was diagnosed at about this age but they also wanted to wait until he was about 3 or 4 before the final diagnosis. We did repeated challenges ( Pneumovax until that age) to see if he was still building antibodies. I would be looking at your family history and others with other immune or Autoimmune diseases to support the overall diagnosis. My son was adopted so we did not have that supportive info. So basically do not be surprised if they want to wait to start treatment or that they start and then stop it and retest to see if her system has kicked in. Some doctors believe that waiting allows her immune system to kick in better than treating early especially if she has not had a life threatening infection but more chronic infections. . BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, March 11, 2011 10:17:56 AM Subject: Re: Hypogammaglobulinemia Sounds like classic CVID, treatment is IVIG. It can be a scary prospect at 1st but it will really slow down the rate of illness and keep her from getting so sick all the time. Illness + FOD is a scary thing and treating the CVID will help big time. I will say you might want to get her switched to the sub-q method (you do at home weekly) as soon as possible if you go the IG route so you can avoid picking up more germs in the hospital and risking crisis with the VLCAD. (I know you from the FOD group:) ________________________________ From: hessesarah <hessesarah@...> Sent: Fri, March 11, 2011 9:51:24 AM Subject: Hypogammaglobulinemia Ok so i went to my daughters genetics apointment and i found out that the hemotologist diagnosed her w/ hypogammaglobulinemia . So she has nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is or if it is several different ones but i am waiting for the immunologist to call me back because she couldnt get us in for an appointment and they are reviewing her case. sarah Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to vacc titers etc.... 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 March 11, 2011 Report Share Posted March 11, 2011 I would be surprised if they wait, the child has VLCAD which mean fasting is deadly as can bodily stress be. They have to be put in the hospital on D10 IV drips anytime they get sick and stop eating/drinking so even a minor cold can be dangerous if they don't feel like eating or drinking for more then a few hours. Their not able to burn ketones for energy as they don't produce them so once the glucose they ate runs out their bodies shut down, they literally run out of fuel. I can't see them waiting to start treatment when the risk to getting sick is so high. ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Fri, March 11, 2011 10:31:48 AM Subject: Re: Hypogammaglobulinemia keep in mind that she is only 15 months. My son was diagnosed at about this age but they also wanted to wait until he was about 3 or 4 before the final diagnosis. We did repeated challenges ( Pneumovax until that age) to see if he was still building antibodies. I would be looking at your family history and others with other immune or Autoimmune diseases to support the overall diagnosis. My son was adopted so we did not have that supportive info. So basically do not be surprised if they want to wait to start treatment or that they start and then stop it and retest to see if her system has kicked in. Some doctors believe that waiting allows her immune system to kick in better than treating early especially if she has not had a life threatening infection but more chronic infections. . BARBIE ________________________________ From: <bluetaelon@...> Sent: Fri, March 11, 2011 10:17:56 AM Subject: Re: Hypogammaglobulinemia Sounds like classic CVID, treatment is IVIG. It can be a scary prospect at 1st but it will really slow down the rate of illness and keep her from getting so sick all the time. Illness + FOD is a scary thing and treating the CVID will help big time. I will say you might want to get her switched to the sub-q method (you do at home weekly) as soon as possible if you go the IG route so you can avoid picking up more germs in the hospital and risking crisis with the VLCAD. (I know you from the FOD group:) ________________________________ From: hessesarah <hessesarah@...> Sent: Fri, March 11, 2011 9:51:24 AM Subject: Hypogammaglobulinemia Ok so i went to my daughters genetics apointment and i found out that the hemotologist diagnosed her w/ hypogammaglobulinemia . So she has nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is or if it is several different ones but i am waiting for the immunologist to call me back because she couldnt get us in for an appointment and they are reviewing her case. sarah Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to vacc titers etc.... 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 March 11, 2011 Report Share Posted March 11, 2011 But if the dysfunction isn't treated by the product it's an unnecessary risk. Looking at all the choices (infusions vs maintenance antibiotics vs wait and see approach) Ursula On Mar 11, 2011, at 2:02 PM, <bluetaelon@...> wrote: > I would be surprised if they wait, the child has VLCAD which mean fasting is > deadly as can bodily stress be. They have to be put in the hospital on D10 IV > drips anytime they get sick and stop eating/drinking so even a minor cold can be > dangerous if they don't feel like eating or drinking for more then a few hours. > Their not able to burn ketones for energy as they don't produce them so once > the glucose they ate runs out their bodies shut down, they literally run out of > fuel. I can't see them waiting to start treatment when the risk to getting sick > is so high. > > > > ________________________________ > From: Barbara Jimenez <mother5590@...> > > Sent: Fri, March 11, 2011 10:31:48 AM > Subject: Re: Hypogammaglobulinemia > > keep in mind that she is only 15 months. My son was diagnosed at about this age > but they also wanted to wait until he was about 3 or 4 before the final > diagnosis. We did repeated challenges ( Pneumovax until that age) to see if he > was still building antibodies. I would be looking at your family history and > others with other immune or Autoimmune diseases to support the overall > diagnosis. My son was adopted so we did not have that supportive info. So > basically do not be surprised if they want to wait to start treatment or that > they start and then stop it and retest to see if her system has kicked in. Some > doctors believe that waiting allows her immune system to kick in better than > treating early especially if she has not had a life threatening infection but > more chronic infections. . > > BARBIE > > ________________________________ > From: <bluetaelon@...> > > Sent: Fri, March 11, 2011 10:17:56 AM > Subject: Re: Hypogammaglobulinemia > > Sounds like classic CVID, treatment is IVIG. It can be a scary prospect at 1st > but it will really slow down the rate of illness and keep her from getting so > sick all the time. Illness + FOD is a scary thing and treating the CVID will > help big time. I will say you might want to get her switched to the sub-q method > > (you do at home weekly) as soon as possible if you go the IG route so you can > avoid picking up more germs in the hospital and risking crisis with the VLCAD. > > (I know you from the FOD group:) > > ________________________________ > From: hessesarah <hessesarah@...> > > Sent: Fri, March 11, 2011 9:51:24 AM > Subject: Hypogammaglobulinemia > > Ok so i went to my daughters genetics apointment and i found out that the > hemotologist diagnosed her w/ hypogammaglobulinemia . So she has > nuetropenia,hypogammaglobulinemia,and doesnt respond to her titer such as > tetanus,pnuemococi, etc so we are still not sure what the overall diagnoses is > or if it is several different ones but i am waiting for the immunologist to call > > me back because she couldnt get us in for an appointment and they are reviewing > her case. > sarah > Dakota 15 months old-VLCAD, nuetropenia,hypogammaglobuinemia,non-responder to > vacc titers etc.... > 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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