Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Destiny, Thanks so much for sharing your son's experience with the group! Reading about your visit with Dr. Gelfand was enlightening -- particularly the part when you said, " When I asked Dr Gelfand what would cause Tucker's antibodies to suddenly drop again he said transient hypogamma. would have been outgrown by the age of 3 and that he had not " gotten better & suddenly dropped " he has never been in a normal range except when he was in IVIG that the lab his family doc. was using was not using the correct ref. range for a child, anything under 500 should be investigated. " Incredibly enlightening! Please let us know the outcome. - I am wondering how far you are to Colorado or if you can connect with Dr. Gelfand. LOL. (mother to 3 year old, hypogam and all...) tuckspid <tuckspid@...> wrote: Hi, My name is Destiny and my son Tucker is 8 years old, diagnosed with hypogammaglobulinemia. Tucker was diagnosed when he was 3yo. We did infusions monthly for 2 years with breaks of 3 months every 6 months. My understanding then was that he may be transient and could outgrow the hypogam., so we tested him regularly through his primary care doc. 2003 & 2004 were pretty good with only a few sinus infections, etc., and since his IGg had stayed in the 395-420 range his family doc felt we did not need to do the IVIG unless the infections increased. In 2003 he was diagnosed with asthma, but has no allergies, and seemed to do fairly well until this last spring. He started to get sick in Jan and has not been totally well since. He has been on abx 4 times ranging from 10 days to 21 days at a time since March. He has taken 2 rounds of predinsone as well as increased Pulmicort and neb albuterol. His IGg in March was 458 and when checked in July has dropped to 334 his family doc felt we could take a wait & see approach and give it some time. When I took him for a routine check-up with his pulmo. (Dr White, National Jewish) his lung function was terrible so we increased his meds & added a few. We discussed IVIG & he felt there was no need to panic just yet, that he wanted to discuss it with his collegues and get there opinions. The following Monday morning I get a call that he and the other pulmo discussed it on the way back to Denver and decided that he should be seen by the chief immunologist at National Jewish (Dr. Gelfand)... Here's where the questions come... We thought maybe Tucker had outgrown his hypogam. since his numbers according to his family doc were holding in the " low normal " . The new lab they have been sending the info to has a different ref. range than before. When I asked Dr Gelfand what would cause Tucker's antibodies to suddenly drop again he said transient hypogamma. would have been outgrown by the age of 3 and that he had not " gotten better & suddenly dropped " he has never been in a normal range except when he was in IVIG that the lab his family doc. was using was not using the correct ref. range for a child, anything under 500 should be investigated. I guess we learned our lesson about trying to allow the family doc to handle the PID. We are now waiting on pre & post titers (previously non-responder) and then we will decide. We have tried preventive abx with no success, so what else can we do to control the infections if we don't do IVIG? I was also wondering what they may be looking for on the lung CT they ordered. Dr Gelfand mentioned that is was very unusual for a child Tuckers age to have asthma without allergies. Not unheard of just unusual. Any insight? Dr. White says he has classic asthma signals. If it is not asthma, what is causing such poor lung function and the shortness of breath? Sorry so long, thanks for listening, Destiny (mom to Kyp 12, picture of health, Tucker 8, hypogamma, asthma) 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 September 26, 2005 Report Share Posted September 26, 2005 , That is what is so great about being a part of a group like this, you get not only support you get the experience of parents and doctors information for several different sources! The more informed we are the better we can fight for our babies! Destiny, mom to Tucker 8, hypogamma, asthma... Schulman <dietdoc@...> wrote: Destiny, Thanks so much for sharing your son's experience with the group! Reading about your visit with Dr. Gelfand was enlightening -- particularly the part when you said, " When I asked Dr Gelfand what would cause Tucker's antibodies to suddenly drop again he said transient hypogamma. would have been outgrown by the age of 3 and that he had not " gotten better & suddenly dropped " he has never been in a normal range except when he was in IVIG that the lab his family doc. was using was not using the correct ref. range for a child, anything under 500 should be investigated. " Incredibly enlightening! Please let us know the outcome. - I am wondering how far you are to Colorado or if you can connect with Dr. Gelfand. LOL. (mother to 3 year old, hypogam and all...) tuckspid <tuckspid@...> wrote: Hi, My name is Destiny and my son Tucker is 8 years old, diagnosed with hypogammaglobulinemia. Tucker was diagnosed when he was 3yo. We did infusions monthly for 2 years with breaks of 3 months every 6 months. My understanding then was that he may be transient and could outgrow the hypogam., so we tested him regularly through his primary care doc. 2003 & 2004 were pretty good with only a few sinus infections, etc., and since his IGg had stayed in the 395-420 range his family doc felt we did not need to do the IVIG unless the infections increased. In 2003 he was diagnosed with asthma, but has no allergies, and seemed to do fairly well until this last spring. He started to get sick in Jan and has not been totally well since. He has been on abx 4 times ranging from 10 days to 21 days at a time since March. He has taken 2 rounds of predinsone as well as increased Pulmicort and neb albuterol. His IGg in March was 458 and when checked in July has dropped to 334 his family doc felt we could take a wait & see approach and give it some time. When I took him for a routine check-up with his pulmo. (Dr White, National Jewish) his lung function was terrible so we increased his meds & added a few. We discussed IVIG & he felt there was no need to panic just yet, that he wanted to discuss it with his collegues and get there opinions. The following Monday morning I get a call that he and the other pulmo discussed it on the way back to Denver and decided that he should be seen by the chief immunologist at National Jewish (Dr. Gelfand)... Here's where the questions come... We thought maybe Tucker had outgrown his hypogam. since his numbers according to his family doc were holding in the " low normal " . The new lab they have been sending the info to has a different ref. range than before. When I asked Dr Gelfand what would cause Tucker's antibodies to suddenly drop again he said transient hypogamma. would have been outgrown by the age of 3 and that he had not " gotten better & suddenly dropped " he has never been in a normal range except when he was in IVIG that the lab his family doc. was using was not using the correct ref. range for a child, anything under 500 should be investigated. I guess we learned our lesson about trying to allow the family doc to handle the PID. We are now waiting on pre & post titers (previously non-responder) and then we will decide. We have tried preventive abx with no success, so what else can we do to control the infections if we don't do IVIG? I was also wondering what they may be looking for on the lung CT they ordered. Dr Gelfand mentioned that is was very unusual for a child Tuckers age to have asthma without allergies. Not unheard of just unusual. Any insight? Dr. White says he has classic asthma signals. If it is not asthma, what is causing such poor lung function and the shortness of breath? Sorry so long, thanks for listening, Destiny (mom to Kyp 12, picture of health, Tucker 8, hypogamma, asthma) 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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