Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Hi Meko, Just wanted to let you know you are not alone in the dark. My name is Peggy and I am very new to this group but not new to having two children with IGA deficiency, my son is almost 5 and has had 5 surgeries and my daughter is 16 mths and has had 4 already, my daughter was born with zero Iga's and my son has 13. My daughter goes back to the immunologist today as a matter of fact to find out about having the immunoglobin IV drips done to her, her surgeries have not done the trick for her and the only way she is well is to be on orals or on Rocephin injections. My son stays well for the most part now, thank god for that but he has his flare ups too. Ask me anything anytime I hope maybe we can help each other. On Sunday, March 30, 2003, at 10:52 PM, Meko Wallace wrote: > > Hi,my name is Meko. My son's name is Rikki. He is 14 mths.He has been > diagnoised with an Iga and Igg immune deficiency. We recently went to > the immunologist to have ex-rays and alot of lab work performed . We > don't go back to the the dr. until the 18th of April to go over the > results.He also had to go have tubes put in his ears,due to all the > reoccuring ear infections. I am not really familar with all this iga > and igg immune deficiency talk.I have looked up numerous information > on these deficiencies. But I am still very much in the dark I feel. So > if anyone could enlighten me a little bit more,I would grealty > appreciate it. > > Thank you, > > Meko > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Peggy, Thanks for replying. First and foremost how did your doctors app go,today? What does the immunoglobin IV drip consists of? I've read some on it. But the dr has not talked with me about that yet. We don't go back to immunologist until 4/18/03. That's when we go over the test results. My nerves have been a wreck. At first we just going back and forth to the dr's office for colds,ear infections,and what we thought were stomach viruses. I finally asked his dr. if she could check his immune system because we are coming in way to much and I have 3 other children and we have never been to the dr's office so much in 1 yr. They checked his immune system and she called me back and told me his IgA and IGg levels were way below normal. I feel so helpless at times because I never know when he's going to get sick again. But any information and knowledge that you have please share it with me. I want to know and learn all I can about this illness. Thank you,so much. Meko Peggy Sturgis <psturgis@...> wrote:Hi Meko, Just wanted to let you know you are not alone in the dark. My name is Peggy and I am very new to this group but not new to having two children with IGA deficiency, my son is almost 5 and has had 5 surgeries and my daughter is 16 mths and has had 4 already, my daughter was born with zero Iga's and my son has 13. My daughter goes back to the immunologist today as a matter of fact to find out about having the immunoglobin IV drips done to her, her surgeries have not done the trick for her and the only way she is well is to be on orals or on Rocephin injections. My son stays well for the most part now, thank god for that but he has his flare ups too. Ask me anything anytime I hope maybe we can help each other. On Sunday, March 30, 2003, at 10:52 PM, Meko Wallace wrote: > > Hi,my name is Meko. My son's name is Rikki. He is 14 mths.He has been > diagnoised with an Iga and Igg immune deficiency. We recently went to > the immunologist to have ex-rays and alot of lab work performed . We > don't go back to the the dr. until the 18th of April to go over the > results.He also had to go have tubes put in his ears,due to all the > reoccuring ear infections. I am not really familar with all this iga > and igg immune deficiency talk.I have looked up numerous information > on these deficiencies. But I am still very much in the dark I feel. So > if anyone could enlighten me a little bit more,I would grealty > appreciate it. > > Thank you, > > Meko > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Hi Meko. My son, , who is now six, was diagnosed with X-linked Hyper IgM Syndrome when he was 17 months old. He was chronically ill from 4 months old until his diagnoses and subsequent treatment with IVIG (it took about 6 months to get the full effect.) He has no IgA and extremely low to no IgG on his own. IgM is normal to high. Have they done any genetic testing on Rikki? Until they got the results of 's genetic testing, they said that sometimes children have this type of problem simply due to an immature immune system, which they grow out of within months or a few years. IgA cannot be replaced with the IVIG treatment, though some IVIG products have a tiny, tiny amount of it. It is meant to replace the IgG. Be sure that they test Rikki for a IgA antibody. If they prescribe IVIG for him, it will be important to know whether or not he can use the IVIG products that have minute quantities of the IgA. If he has IgA antibodies, he will need to have a product that has had all IgA removed. additionally has daily antibiotics - they switch off every month to hopefully avoid his becoming resistant to them (Amoxicillan and Septra). He is also on Zyrtec, Singulair, and Hydroxyzine to keep his sinuses cleared out and his lung functions healthy. He still gets the occasional sinus infection (which can be a bear to get rid of), but he is no longer ill 3 out of 4 weeks. He is generally healthy and happy. You may want to contact the IDF (Immune Deficiency Foundation). They are a great resource and even have a line dedicated to the physicians of children with a primary immune deficiency. Don't be shy about giving this to your doctor. These problems are not that common, and many of us parents have found ourselves becoming the teachers of our kids' doctors, nurses and teachers, at least to the extent of making sure that they have proper up-to-date information about our child's condition. Several of the primary care physicians have only had the one patient who had a PID. I know that Sam is our doctor's only case. This list is a great support group and a fountain of information. We're glad you found us. God bless, Wenoka (AMY - 8, wants to be the boss / - 6, Hyper IgM Syndrome, Sensory Integration Disorder, Seizure Disorder, wants to be the boss / Christi - 2, has pee-peed twice in the potty, knows that she's the boss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Meko, The immunologist apt was okay, he ran a study of tests on her yesterday which of course included another poke with a needle and 3 vials of blood, I hate that. Anyway he is a very conservative doctor and told us what the tests were for but not the what if's if they didn't come back okay. He has put her on a daily dose of Bactrim antibiotics 6ml per day for the next three months because after all the surgeries she just had last month, she still has an ear infection. This ear infection has been there since I quit breast feeding her at eight months. The one thing I do know is that he testing for something in her blood that fights infection, I want to say it's something like copulets, but I'm not completely sure, the other thing he did say is that she very much so a different case than our son was, he also is IGA deficient but could be given 10 days of augmentin and be fine after that, Meghan has to take 3-4 days of Rocephin injections along with high doses of Omnicef to even give her a boost. I won't know anything on her blood work until April 21st that is our next appointment, whatever the tests are they take two weeks to get back anyway. And Meko, talk about feeling helpless, thats me everyday, I feel like I gave this to my children so I also have the guilt that I deal with everyday. I haven't worked a full week of work since June of 2002. I literally miss work on the average of once a week, mostly because of Meghan. I have since gone on medication for depression/anxiety and it has helped along with exercising 4-5 times a week, it releases endorphins that make you feel better, we have to be there for our kids, so we need to stay healthy. As far as sites to go and do research, go to a search engine like " google " and type in IGA deficiency and also IGG deficiency, lots of great reading materials. Talk to you soon Meko! On Monday, March 31, 2003, at 05:00 PM, Meko Wallace wrote: > > Peggy, > Thanks for replying. First and foremost how did your doctors app > go,today? > What does the immunoglobin IV drip consists of? I've read some on > it. But the dr has not talked with me about that yet. We don't go back > to immunologist until 4/18/03. That's when we go over the test > results. My nerves have been a wreck. > At first we just going back and forth to the dr's office for > colds,ear infections,and what we thought were stomach viruses. I > finally asked his dr. if she could check his immune system because we > are coming in way to much and I have 3 other children and we have > never been to the dr's office so much in 1 yr. They checked his immune > system and she called me back and told me his IgA and IGg levels were > way below normal. > I feel so helpless at times because I never know when he's going > to get sick again. But any information and knowledge that you have > please share it with me. I want to know and learn all I can about this > illness. Thank you,so much. > Meko > > Peggy Sturgis <psturgis@...> wrote:Hi Meko, > Just wanted to let you know you are not alone in the dark. My name is > Peggy and I am very new to this group but not new to having two > children with IGA deficiency, my son is almost 5 and has had 5 > surgeries and my daughter is 16 mths and has had 4 already, my daughter > was born with zero Iga's and my son has 13. My daughter goes back to > the immunologist today as a matter of fact to find out about having the > immunoglobin IV drips done to her, her surgeries have not done the > trick for her and the only way she is well is to be on orals or on > Rocephin injections. My son stays well for the most part now, thank god > for that but he has his flare ups too. > Ask me anything anytime I hope maybe we can help each other. > On Sunday, March 30, 2003, at 10:52 PM, Meko Wallace wrote: > >> >> Hi,my name is Meko. My son's name is Rikki. He is 14 mths.He has been >> diagnoised with an Iga and Igg immune deficiency. We recently went to >> the immunologist to have ex-rays and alot of lab work performed . We >> don't go back to the the dr. until the 18th of April to go over the >> results.He also had to go have tubes put in his ears,due to all the >> reoccuring ear infections. I am not really familar with all this iga >> and igg immune deficiency talk.I have looked up numerous information >> on these deficiencies. But I am still very much in the dark I feel. So >> if anyone could enlighten me a little bit more,I would grealty >> appreciate it. >> >> Thank you, >> >> Meko >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 I think your doctor might be testing the Complement, which, if I understand it right, is the cascade of molecules that triggers the release of white blood cells. It's probably a CH-50 test. Pam wife to (16 years) mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1 Re: Rikki my son The one thing I do know is that he testing for something in her blood that fights infection, I want to say it's something like copulets, but I'm not completely sure, Quote Link to comment Share on other sites More sharing options...
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