Guest guest Posted February 26, 2006 Report Posted February 26, 2006 Hello all, Thank you for letting me join this community. Dayna directed me to it and I can already see it will be very helpful. I live in Woodbury, MN and am mother to a one year old little joy named Ana. She was born in Waconia, MN 10 days early, I had toxemia. She was healthy until around 11 weeks. Started then with croup. At 3 months hospitilized with RSV for a week. That was followed by 2 pneumonia's. I started asking questions about this being normal and was told it was just bad luck. Luckily had a very good peds doc who humored me by checking Ana's immune system at six months. She came back with very low IgG levels. She refered us to an allergist who said it was normal at six months. We went to a different immunologist at nine months and they rechecked, her levels had dropped further. Since six months she has had ongoing sinus and ear infections. Off of the antibiotics for less then 3-4 days before it comes back every time. We are now waiting for 12 month recheck results then I will push for them to do more for her. She is not growing. Has dropped from the 75% at six months for weight to below the 10% at 12 months. Less then a pounds in the last six months. They say she has dairy allergy, though it doesn't seem like a true allergy to me, and all the allergy tests were negative. But she and I (she is still nursed at night) are off dairy. She loves to read books and cuddle. Very lovey little girl, my joy. I look forward to swapping ideas with everyone and can not express how thankful I am going to be for the support from people who understand. What a Godsend! Hope to talk to each of you soon. Fritze mom to Ana Marie, my angel Quote
Guest guest Posted February 26, 2006 Report Posted February 26, 2006 - Great to see you here! I know you'll find as much hope, support, and information as I have! A special thank you to Ursula to getting you approved so quickly!!! Dayna Introduction- Hello all, Thank you for letting me join this community. Dayna directed me to it and I can already see it will be very helpful. I live in Woodbury, MN and am mother to a one year old little joy named Ana. She was born in Waconia, MN 10 days early, I had toxemia. She was healthy until around 11 weeks. Started then with croup. At 3 months hospitilized with RSV for a week. That was followed by 2 pneumonia's. I started asking questions about this being normal and was told it was just bad luck. Luckily had a very good peds doc who humored me by checking Ana's immune system at six months. She came back with very low IgG levels. She refered us to an allergist who said it was normal at six months. We went to a different immunologist at nine months and they rechecked, her levels had dropped further. Since six months she has had ongoing sinus and ear infections. Off of the antibiotics for less then 3-4 days before it comes back every time. We are now waiting for 12 month recheck results then I will push for them to do more for her. She is not growing. Has dropped from the 75% at six months for weight to below the 10% at 12 months. Less then a pounds in the last six months. They say she has dairy allergy, though it doesn't seem like a true allergy to me, and all the allergy tests were negative. But she and I (she is still nursed at night) are off dairy. She loves to read books and cuddle. Very lovey little girl, my joy. I look forward to swapping ideas with everyone and can not express how thankful I am going to be for the support from people who understand. What a Godsend! Hope to talk to each of you soon. Fritze mom to Ana Marie, my angel 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
Guest guest Posted February 26, 2006 Report Posted February 26, 2006 Hi, . Welcome to the group! Your daughter's experience is all too familiar to us. My daughter was also fine at birth and started to decline within a few months (croup, bronchiolitis, multiple ear infections, croup again...all the while I was only nursing because she would not eat anything). The best thing we ever did was to advocate for her and use common sense. Follow your instincts and get first, second, third opinions if that what it takes to protect your precious child. Also, there are some very smart and experienced parents in this group that might have suggestions along the way. In our case, it took multiple blood tests for the docs to comprehend a pattern -- all low IgG, IgA, IgM, antibody function (e.g., response to immunizations), T-cells irregularities, etc. Most of the parents here can help you to make sure that all of the usual tests are done. Even kids with compromised immune systems can have an almost normal number and followed by low numbers. What really matters is the trend. Figuring out immune disorders is, at times, a bit like chasing ghosts. It is sometimes difficult to find a concrete answers right away. You said: " They say she has dairy allergy, though it doesn't seem like a true allergy to me, and all the allergy tests were negative. " Kiddos with low IgE or immune irregularities may not test positive for allergies -- even though they have them! This is true, for example, with celiacs disease and low IgA. Also, some allergies are immune driven and this is a very new area of research. If you look for run of the mill allergies in a child with immune problems, you may not find the offending food, bug, etc. Also, our kids sometimes have autoimmune issues that affect the gut. A good GI doc will be able to guide you. If it is a true immune problem, sometimes IgG therapy can assist in reducing allergies around over time. If you don't already have a trusted GI doc, I would post a note to the group for recommendations. Unfortunately, there are quite a few GI docs that really don't understand the GI-immune connections -- but are comfortable practicing way outside their scope of practice. Very scary. We are all here for you. You are not alone now. (mom to 4 year old with low IgG, IgM, IgA, T-cell irregularities, managing gut problems now). jmfritze <jmfritze@...> wrote: Hello all, Thank you for letting me join this community. Dayna directed me to it and I can already see it will be very helpful. I live in Woodbury, MN and am mother to a one year old little joy named Ana. She was born in Waconia, MN 10 days early, I had toxemia. She was healthy until around 11 weeks. Started then with croup. At 3 months hospitilized with RSV for a week. That was followed by 2 pneumonia's. I started asking questions about this being normal and was told it was just bad luck. Luckily had a very good peds doc who humored me by checking Ana's immune system at six months. She came back with very low IgG levels. She refered us to an allergist who said it was normal at six months. We went to a different immunologist at nine months and they rechecked, her levels had dropped further. Since six months she has had ongoing sinus and ear infections. Off of the antibiotics for less then 3-4 days before it comes back every time. We are now waiting for 12 month recheck results then I will push for them to do more for her. She is not growing. Has dropped from the 75% at six months for weight to below the 10% at 12 months. Less then a pounds in the last six months. They say she has dairy allergy, though it doesn't seem like a true allergy to me, and all the allergy tests were negative. But she and I (she is still nursed at night) are off dairy. She loves to read books and cuddle. Very lovey little girl, my joy. I look forward to swapping ideas with everyone and can not express how thankful I am going to be for the support from people who understand. What a Godsend! Hope to talk to each of you soon. Fritze mom to Ana Marie, my angel 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
Guest guest Posted February 26, 2006 Report Posted February 26, 2006 I was told also that you can have a negative response to the allergy test and still have an allergy. Cassie Schulman wrote: > Hi, . > > Welcome to the group! Your daughter's experience is all too > familiar to us. My daughter was also fine at birth and started to > decline within a few months (croup, bronchiolitis, multiple ear > infections, croup again...all the while I was only nursing because she > would not eat anything). > > The best thing we ever did was to advocate for her and use common > sense. Follow your instincts and get first, second, third opinions if > that what it takes to protect your precious child. Also, there are > some very smart and experienced parents in this group that might have > suggestions along the way. > > In our case, it took multiple blood tests for the docs to comprehend > a pattern -- all low IgG, IgA, IgM, antibody function (e.g., response > to immunizations), T-cells irregularities, etc. Most of the parents > here can help you to make sure that all of the usual tests are done. > Even kids with compromised immune systems can have an almost normal > number and followed by low numbers. What really matters is the > trend. Figuring out immune disorders is, at times, a bit like chasing > ghosts. It is sometimes difficult to find a concrete answers right > away. > > You said: " They say she has dairy allergy, though it doesn't seem > like a true allergy to me, and all the allergy tests were negative. " > > Kiddos with low IgE or immune irregularities may not test positive > for allergies -- even though they have them! This is true, for > example, with celiacs disease and low IgA. Also, some allergies are > immune driven and this is a very new area of research. If you look > for run of the mill allergies in a child with immune problems, you may > not find the offending food, bug, etc. Also, our kids sometimes have > autoimmune issues that affect the gut. A good GI doc will be able to > guide you. If it is a true immune problem, sometimes IgG therapy can > assist in reducing allergies around over time. > > If you don't already have a trusted GI doc, I would post a note to > the group for recommendations. Unfortunately, there are quite a few > GI docs that really don't understand the GI-immune connections -- but > are comfortable practicing way outside their scope of practice. Very > scary. > > We are all here for you. You are not alone now. > > (mom to 4 year old with low IgG, IgM, IgA, T-cell > irregularities, managing gut problems now). > > jmfritze <jmfritze@...> wrote: > Hello all, > > Thank you for letting me join this community. Dayna directed me to > it and I can already see it will be very helpful. I live in > Woodbury, MN and am mother to a one year old little joy named Ana. > She was born in Waconia, MN 10 days early, I had toxemia. She was > healthy until around 11 weeks. Started then with croup. At 3 > months hospitilized with RSV for a week. That was followed by 2 > pneumonia's. I started asking questions about this being normal and > was told it was just bad luck. Luckily had a very good peds doc who > humored me by checking Ana's immune system at six months. She came > back with very low IgG levels. She refered us to an allergist who > said it was normal at six months. We went to a different > immunologist at nine months and they rechecked, her levels had > dropped further. Since six months she has had ongoing sinus and ear > infections. Off of the antibiotics for less then 3-4 days before it > comes back every time. We are now waiting for 12 month recheck > results then I will push for them to do more for her. She is not > growing. Has dropped from the 75% at six months for weight to below > the 10% at 12 months. Less then a pounds in the last six months. > They say she has dairy allergy, though it doesn't seem like a true > allergy to me, and all the allergy tests were negative. But she and > I (she is still nursed at night) are off dairy. She loves to read > books and cuddle. Very lovey little girl, my joy. I look forward > to swapping ideas with everyone and can not express how thankful I > am going to be for the support from people who understand. What a > Godsend! Hope to talk to each of you soon. > > Fritze > mom to Ana Marie, my angel > > > > > > > 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
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