Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Barbie: I've meant to get back and ask you about that Gelly Belly bear you suggested. It sounds great, but I can't find one! Is that the full name? Do you know who makes it? Where did you find it? Thanks! (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Barbie: I've meant to get back and ask you about that Gelly Belly bear you suggested. It sounds great, but I can't find one! Is that the full name? Do you know who makes it? Where did you find it? Thanks! (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Barbie: I've meant to get back and ask you about that Gelly Belly bear you suggested. It sounds great, but I can't find one! Is that the full name? Do you know who makes it? Where did you find it? Thanks! (mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Its Canadian and we sell them in our store. I think they are $30.00 and we could send you one if you like.Let me know because there are several colors. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 I had the same question about why we were running them but the only thing I wanted was a CBC since Lucas was anemic several times in the past. His Hemoglobin is 12.2 now so not too bad but not great for a male kid. Why would the IGM be down? I do not remember it being low before. I will get my answers on Friday but I wanted to understand a little more before I go in. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 I had the same question about why we were running them but the only thing I wanted was a CBC since Lucas was anemic several times in the past. His Hemoglobin is 12.2 now so not too bad but not great for a male kid. Why would the IGM be down? I do not remember it being low before. I will get my answers on Friday but I wanted to understand a little more before I go in. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 I had the same question about why we were running them but the only thing I wanted was a CBC since Lucas was anemic several times in the past. His Hemoglobin is 12.2 now so not too bad but not great for a male kid. Why would the IGM be down? I do not remember it being low before. I will get my answers on Friday but I wanted to understand a little more before I go in. Barbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Hi Barbie: Since I'm the one who blabbed on about IgA and bovine serum connection, I figured I'd better respond regarding Lucas' labs. had shown IgA levels of (three different test periods)< 7, 10 and 13. But when the milk allergy issue came up, the immuno tested 's Secretory IgA to see if even those readings were a false positive. Her Secretory IgA was " absent " so that means those small numbers were wrong. She didn't say whether a false reading could be bigger, so I don't know. To get around this, they are supposed to order the test this way: " IgA quantitation on a low-titer, radial immunodiffusion plate using rabbit antiserum " BUT even though she ordered it that way for once, they didn't do it right, they still used bovine serum. So you can just do the Secretory IgA test, where they suck saliva out of the mouth and test it. I guess it could be that Lucas' IgA has increased (I HOPE!). Our immuno said IgA def is for life, it won't improve. But a second opinion immuno said it CAN improve. Confusing! I sympathize with your confusion over the results. Every time we get labs back, I'm always thinking I'll have a clearer picture. I always end up kicking myself for having thought that! Write down all your questions for the immuno! Good luck at the appt. (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Hi Barbie: Since I'm the one who blabbed on about IgA and bovine serum connection, I figured I'd better respond regarding Lucas' labs. had shown IgA levels of (three different test periods)< 7, 10 and 13. But when the milk allergy issue came up, the immuno tested 's Secretory IgA to see if even those readings were a false positive. Her Secretory IgA was " absent " so that means those small numbers were wrong. She didn't say whether a false reading could be bigger, so I don't know. To get around this, they are supposed to order the test this way: " IgA quantitation on a low-titer, radial immunodiffusion plate using rabbit antiserum " BUT even though she ordered it that way for once, they didn't do it right, they still used bovine serum. So you can just do the Secretory IgA test, where they suck saliva out of the mouth and test it. I guess it could be that Lucas' IgA has increased (I HOPE!). Our immuno said IgA def is for life, it won't improve. But a second opinion immuno said it CAN improve. Confusing! I sympathize with your confusion over the results. Every time we get labs back, I'm always thinking I'll have a clearer picture. I always end up kicking myself for having thought that! Write down all your questions for the immuno! Good luck at the appt. (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Hi Barbie: Since I'm the one who blabbed on about IgA and bovine serum connection, I figured I'd better respond regarding Lucas' labs. had shown IgA levels of (three different test periods)< 7, 10 and 13. But when the milk allergy issue came up, the immuno tested 's Secretory IgA to see if even those readings were a false positive. Her Secretory IgA was " absent " so that means those small numbers were wrong. She didn't say whether a false reading could be bigger, so I don't know. To get around this, they are supposed to order the test this way: " IgA quantitation on a low-titer, radial immunodiffusion plate using rabbit antiserum " BUT even though she ordered it that way for once, they didn't do it right, they still used bovine serum. So you can just do the Secretory IgA test, where they suck saliva out of the mouth and test it. I guess it could be that Lucas' IgA has increased (I HOPE!). Our immuno said IgA def is for life, it won't improve. But a second opinion immuno said it CAN improve. Confusing! I sympathize with your confusion over the results. Every time we get labs back, I'm always thinking I'll have a clearer picture. I always end up kicking myself for having thought that! Write down all your questions for the immuno! Good luck at the appt. (mom to , age 2, antibody def, IgA, IgM, IgG & subclass def - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 , We had been told it was for life also, but then yesterday by the new immuno we were told that IgA is not normally produced until after 18 months of age so that it will and can increase after that time. So confusing. I didn't get very far w/ the bovine serum issue yest. Caelan's IgA went from less than 7 to 62.8 in only five months. Seems kind of weird. I will ask again the next time they test to do the rabbit serum and also to do a secretory IgA. Grace Caroline 8/14/97 Caelan 8/26/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 , We had been told it was for life also, but then yesterday by the new immuno we were told that IgA is not normally produced until after 18 months of age so that it will and can increase after that time. So confusing. I didn't get very far w/ the bovine serum issue yest. Caelan's IgA went from less than 7 to 62.8 in only five months. Seems kind of weird. I will ask again the next time they test to do the rabbit serum and also to do a secretory IgA. Grace Caroline 8/14/97 Caelan 8/26/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 What % is it? BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 What % is it? BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 What % is it? BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 That is too bad. If anyone comes to Washington or Vancouver BC let me know we would love you have you. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 That is too bad. If anyone comes to Washington or Vancouver BC let me know we would love you have you. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 I think what it comes down to is that I do not think that they really know and the definitions are still changing as we are learning more in science and as more children are living longer and having less life threatening chronic infections. My immuno has said several times that without the antx we have today Lucas would not be here.He also has said that we need to rewrite the textbooks since so many kids are being maintained fairly well on IVIG. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 I think what it comes down to is that I do not think that they really know and the definitions are still changing as we are learning more in science and as more children are living longer and having less life threatening chronic infections. My immuno has said several times that without the antx we have today Lucas would not be here.He also has said that we need to rewrite the textbooks since so many kids are being maintained fairly well on IVIG. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 << I knew he did not feel well and I could see the justification for his acting out but I did not know how to lead him through his misery >> Barbie, wow, YOU READ MY MIND! Thank you so much for taking the time to express those feelings, as I know I'm not alone. I feel this tremendous (self-inflicted) pressure and guilt to " do everything right " to try to make up for the unfairness in 's life. I'm a perfectionist at heart and that's something I've worked on over the past few years, but I need to make sure those ridiculous expectations don't cripple my efforts at plain ole good parenting. I'm so grateful to all of you for your advice! We came to a compromise on the tantrums, as my husband was totally against closing the door on . This is a compilation of advice in parenting books and from other parents: If she's screaming, she has to go in her room until she calms down. Door is open but parents are not in there, we are pretending to not hear it (yeah right!). I tell her, " If you are screaming it hurts my ears and I can't listen. I'll talk to you when you calm down " . Then when she is calm, even a bit, I make sure to get to her and reinforce that. If she calms down really fast I congratulate her, " you did a really good job calming yourself down " . No bribes of course, just Mommy's attention again when there's no screaming and thrashing. I ask her if she wants " up " , meaning picked up, and that way we can hug without her having to " give in " , and we both feel better. I had to do this in the car the other day, pretend not to hear it when she was blasting my eardrums in that enclosed space. But it felt so good to have a firm plan, so it was easy. I didn't flinch, turn around or anything (after I told her what I was doing) until she stopped screaming. It really seemed to work! I sort of got a sense of wonderment like " boy, that screaming sure didn't work " from her. I was wishing for earplugs though!! Sorry so long... thought our plan might come in handy for someone else. Oh, here's more -- I wonder about allergies with because she has those undereye dark circles. But no congestion, runny nose, tearing eyes or anything EVER. So how could she be having allergies? But if not, then what are the dark circles? Also, she's not on any meds whatsoever, so unfortunately I can't try any changes there. It's just a Frustrated Genius trapped inside a two-year old's body! :0) (mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 & CD19) - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 << I knew he did not feel well and I could see the justification for his acting out but I did not know how to lead him through his misery >> Barbie, wow, YOU READ MY MIND! Thank you so much for taking the time to express those feelings, as I know I'm not alone. I feel this tremendous (self-inflicted) pressure and guilt to " do everything right " to try to make up for the unfairness in 's life. I'm a perfectionist at heart and that's something I've worked on over the past few years, but I need to make sure those ridiculous expectations don't cripple my efforts at plain ole good parenting. I'm so grateful to all of you for your advice! We came to a compromise on the tantrums, as my husband was totally against closing the door on . This is a compilation of advice in parenting books and from other parents: If she's screaming, she has to go in her room until she calms down. Door is open but parents are not in there, we are pretending to not hear it (yeah right!). I tell her, " If you are screaming it hurts my ears and I can't listen. I'll talk to you when you calm down " . Then when she is calm, even a bit, I make sure to get to her and reinforce that. If she calms down really fast I congratulate her, " you did a really good job calming yourself down " . No bribes of course, just Mommy's attention again when there's no screaming and thrashing. I ask her if she wants " up " , meaning picked up, and that way we can hug without her having to " give in " , and we both feel better. I had to do this in the car the other day, pretend not to hear it when she was blasting my eardrums in that enclosed space. But it felt so good to have a firm plan, so it was easy. I didn't flinch, turn around or anything (after I told her what I was doing) until she stopped screaming. It really seemed to work! I sort of got a sense of wonderment like " boy, that screaming sure didn't work " from her. I was wishing for earplugs though!! Sorry so long... thought our plan might come in handy for someone else. Oh, here's more -- I wonder about allergies with because she has those undereye dark circles. But no congestion, runny nose, tearing eyes or anything EVER. So how could she be having allergies? But if not, then what are the dark circles? Also, she's not on any meds whatsoever, so unfortunately I can't try any changes there. It's just a Frustrated Genius trapped inside a two-year old's body! :0) (mom to , age 2, antibody def, IgA def, partial T-cell def (CD3 & CD19) - not on IGIV yet) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 Circles I believe can also be from fatigue. Think about what she has been through the last couple of months. I have to work very hard to get Lucas to bed at night and he refuses naps. But if I don't we reallly pay for the lack of sleep. I just thought of something that I often tell my patients. When was about two I came to a very important realization. I really had thought I could be the perfect parent. I tried with everything I could but would still get upset with her and even yell at times. What I finally realized was that if I was perfect all the time then what was I teaching her about being able to make mistakes in her life. How was she suppose to understand how the real world is if I never had the oppurtunity to say " I am sorry " to her. I have met people in my life that have believed that there lives were terrilbe because there parents could not express emotion to them especially if they were angry. They felt that there was no way to learn from there mistakes because they had not had an oppurtunity to mess up , show it and resolve it with love within there family of origin. So when the first person in the " real world " got angry with them they fell apart. My point is that we need not be perfect only real, accepting, loving and forgiving. In the end our kids are fed a wide variety of emotions and it a wonderful learning smorgasbord. Temember I live the life of hard knocks. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2001 Report Share Posted April 26, 2001 Circles I believe can also be from fatigue. Think about what she has been through the last couple of months. I have to work very hard to get Lucas to bed at night and he refuses naps. But if I don't we reallly pay for the lack of sleep. I just thought of something that I often tell my patients. When was about two I came to a very important realization. I really had thought I could be the perfect parent. I tried with everything I could but would still get upset with her and even yell at times. What I finally realized was that if I was perfect all the time then what was I teaching her about being able to make mistakes in her life. How was she suppose to understand how the real world is if I never had the oppurtunity to say " I am sorry " to her. I have met people in my life that have believed that there lives were terrilbe because there parents could not express emotion to them especially if they were angry. They felt that there was no way to learn from there mistakes because they had not had an oppurtunity to mess up , show it and resolve it with love within there family of origin. So when the first person in the " real world " got angry with them they fell apart. My point is that we need not be perfect only real, accepting, loving and forgiving. In the end our kids are fed a wide variety of emotions and it a wonderful learning smorgasbord. Temember I live the life of hard knocks. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Barbie, the ped sent us to the allergist because he suspected mold allergies. Everytime it rains she ends up wheezing terribly. He did the test on her back, and even injected it in her arm. Nothing. I was crushed! The next morning she's complaining her back itches and her arm itches. I lifted up her shirt, and there is a red whelp the size of a silver dollar. Same thing on her arm. I called the allergist the next morning, and told the nurse what I wanted to know. She called me back, and I asked her if he said the mom was crazy, and she said " He said to tell you the pediatrician is always right! He'll send out the new batch of allergy extract this week " . Sometimes you can have delayed reactions. Watch for them. > >Reply-To: PedPID >To: <PedPID > >Subject: Barbie >Date: Sun, 29 Apr 2001 17:31:10 -0400 > >One more thing about Mold allergies, Our allergist said that they can be >present and not show up in skin testing for a long time (hence, the case >with ). Just thought I would mention that. > >Autumn > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2001 Report Share Posted April 29, 2001 Barbie, the ped sent us to the allergist because he suspected mold allergies. Everytime it rains she ends up wheezing terribly. He did the test on her back, and even injected it in her arm. Nothing. I was crushed! The next morning she's complaining her back itches and her arm itches. I lifted up her shirt, and there is a red whelp the size of a silver dollar. Same thing on her arm. I called the allergist the next morning, and told the nurse what I wanted to know. She called me back, and I asked her if he said the mom was crazy, and she said " He said to tell you the pediatrician is always right! He'll send out the new batch of allergy extract this week " . Sometimes you can have delayed reactions. Watch for them. > >Reply-To: PedPID >To: <PedPID > >Subject: Barbie >Date: Sun, 29 Apr 2001 17:31:10 -0400 > >One more thing about Mold allergies, Our allergist said that they can be >present and not show up in skin testing for a long time (hence, the case >with ). Just thought I would mention that. > >Autumn > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.