Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, I'm sorry you feel like no one has responded, some days ar ejust hit or miss sometimes. Most of us do read these boards frequently even though we son't have time to respond, me being one of them. So I apologize for myself. It is frustrating, and I can empathize. We just moved cross country and are trying to re-establish the level of care that we had in our previous state.. To be honest I was hoping we would get better answers. Which is turning out not to be the case. I can only encourage you to keep on pushing the doctors, and also to keep a diary or log of symptoms to have better back -up so to speak to show the doctors. Gotta run GOod Luck Missy www.caringbridge.org/boggio kids Mom to 10 hypogamma IVIG etc Mari Healthy Max T cell dysfunction currently being tested for NUMEROUS things Deska <deska66@...> wrote: April, Right! I hate having to fight for everything! my 6yr old Jayden has low IGA/IGG levels and 3 subclass def the other one is tinkering on being low, he has one t-cell level that is low, and 2 others that on on the border of being low, so the only official diagnosis she has given him is Hypogammaglobulinemia. My oldest son, Phoenix 10yrs old, just has the IGA/IGG def. no subclass, no t-cell, but he has all fo the allergies. They both have chronic sinus infections, and according to the ct-scans, they need sinus surgery, but we're not doing that right now with all of this staph that is running rampant in GA. (I'm sure it's just as bad everywhere else too) We went to the ENT Friday and my youngest has lost even more hearing since 2yrs ago, I don't know if anything ties into that with all of this. And yesterday to the GI dr and they are now testing for Celiac disease too b/c of the low IGA and how bad his reflux still is and his picky eating habits and being on the lower end of the growth charts, even though he's not super small, he is on the lower side. Can I email you directly? my email is deska66@... ... > I joined this group thinking it was supposed to be for support. I have > posted a few times and gotten no reply. I realize that my kids aren't > as sick as some of the others, but none the less, do have similar things. > We have had difficulties with stuff their whole lives, and it has been > frustrating trying to get the Dr's here in GA to listen to our > concerns. No one would test them, even after me asking them to, for > any kind of immune deficiency. I have asked them a few times over the > years and they never would. So once we got our diagnosis last month, > and I found this group, I thought it would be a good release. And then > when I never get any replies, it is just discouraging. Like I said, I > know my kids aren't as sick as some of your kids are, but they do have > a PID, and it is all new and scary for us still. It seems that not > many people in GA even know about this, and we are the first in our > school to have this. I am having to walk the school system through > everything and school them about it all. My kids have missed a lot of > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > get 504's. > > If you guys don't think I need to be a part of your group, then I > understand, but can you direct me to another board? I do need a > support group where I can vent and talk and learn about this stuff. I > have questions and concerns and fears like everyone else with a new > diagnosis does. Through all of our stuff, tracheomalacia, heart > murmur, reflux, recurrent croup that is now asthma, recurrent ear > infections, etc I have had to learn about stuff and cope, and I just > need a place where I can find some support. > > > > > > > When everything seems to be going against you, remember the airplane takes off against the wind, not with it. > --Henry Ford > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, This is a very good group. Sorry that you didn't get a response when you first posted. I know that if you ask for something specific you should get answers. My immune Dr actually told me that I should ask my questions to this group as they were that good they help keep her on her toes. We too are actually a pretty " mild " case as PID goes, but still suffering none the less. My husband is PID-CVID, Hypogamma. and so is my son. My husband is 36 now and been doing IVIG/SCIG for the last 3 years but before that suffered for 19 years before they found out what he had. When my MIL tried to get help for him they ignored her in her day people just thought she was a bad mother, her close friends tell her that to this day, no one believed her. When my son was born we knew he could get what Dad had, and at a year it was confirmed. But the first 3-4 years wasn't so bad, then it hit, now DS 6 yo is doing SCIG for 5 months now and it's starting to get better. When I think it's tough I just think of my MIL and how bad she had it, at least we have the internet and all it's resources, she was still looking at the PDR from the library. Ok, one other note, I see you mention looking into Celiac, watch the blood results on that one. With having low or nonexistent IGA and IGG numbers it throws off the Celiac results. I had to educate some of our Dr's on this. It's in the book Dangerous Grains, but your results may be off because you won't read positive in certain blood markers because it's not there to show up. Only true test especially for our kids is the endoscopy with proof of damage. -Michele From: [mailto: ] On Behalf Of Deska Sent: Wednesday, May 07, 2008 8:53 AM Subject: Re: ????? April, Right! I hate having to fight for everything! my 6yr old Jayden has low IGA/IGG levels and 3 subclass def the other one is tinkering on being low, he has one t-cell level that is low, and 2 others that on on the border of being low, so the only official diagnosis she has given him is Hypogammaglobulinemia. My oldest son, Phoenix 10yrs old, just has the IGA/IGG def. no subclass, no t-cell, but he has all fo the allergies. They both have chronic sinus infections, and according to the ct-scans, they need sinus surgery, but we're not doing that right now with all of this staph that is running rampant in GA. (I'm sure it's just as bad everywhere else too) We went to the ENT Friday and my youngest has lost even more hearing since 2yrs ago, I don't know if anything ties into that with all of this. And yesterday to the GI dr and they are now testing for Celiac disease too b/c of the low IGA and how bad his reflux still is and his picky eating habits and being on the lower end of the growth charts, even though he's not super small, he is on the lower side. Can I email you directly? my email is deska66@... <mailto:deska66%40> ... > I joined this group thinking it was supposed to be for support. I have > posted a few times and gotten no reply. I realize that my kids aren't > as sick as some of the others, but none the less, do have similar things. > We have had difficulties with stuff their whole lives, and it has been > frustrating trying to get the Dr's here in GA to listen to our > concerns. No one would test them, even after me asking them to, for > any kind of immune deficiency. I have asked them a few times over the > years and they never would. So once we got our diagnosis last month, > and I found this group, I thought it would be a good release. And then > when I never get any replies, it is just discouraging. Like I said, I > know my kids aren't as sick as some of your kids are, but they do have > a PID, and it is all new and scary for us still. It seems that not > many people in GA even know about this, and we are the first in our > school to have this. I am having to walk the school system through > everything and school them about it all. My kids have missed a lot of > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > get 504's. > > If you guys don't think I need to be a part of your group, then I > understand, but can you direct me to another board? I do need a > support group where I can vent and talk and learn about this stuff. I > have questions and concerns and fears like everyone else with a new > diagnosis does. Through all of our stuff, tracheomalacia, heart > murmur, reflux, recurrent croup that is now asthma, recurrent ear > infections, etc I have had to learn about stuff and cope, and I just > need a place where I can find some support. > > > > > > > When everything seems to be going against you, remember the airplane takes off against the wind, not with it. > --Henry Ford > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, I am in GA too and am having a very hard time. What your kids are going through sounds exactally like my twin boys 15 months old. They have very simmilar test results. Are you near the Atlanta area? We are having to fight wiht the schools for our other 2 daughters as we are afraid of them bringing home the germs from school to their brothers. It is rough. It would be nice to talk ot someone who lives in this state and can navigate the waters with us.. On May 7, 2008, at 8:52 AM, Deska wrote: > April, > > Right! I hate having to fight for everything! my 6yr old Jayden has > low IGA/IGG levels and 3 subclass def the other one is tinkering on > being low, he has one t-cell level that is low, and 2 others that on > on the border of being low, so the only official diagnosis she has > given him is Hypogammaglobulinemia. My oldest son, Phoenix 10yrs old, > just has the IGA/IGG def. no subclass, no t-cell, but he has all fo > the allergies. They both have chronic sinus infections, and according > to the ct-scans, they need sinus surgery, but we're not doing that > right now with all of this staph that is running rampant in GA. (I'm > sure it's just as bad everywhere else too) > > We went to the ENT Friday and my youngest has lost even more hearing > since 2yrs ago, I don't know if anything ties into that with all of > this. And yesterday to the GI dr and they are now testing for Celiac > disease too b/c of the low IGA and how bad his reflux still is and his > picky eating habits and being on the lower end of the growth charts, > even though he's not super small, he is on the lower side. > > Can I email you directly? my email is deska66@... ... > > > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids > aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has > been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over > the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And > then > > when I never get any replies, it is just discouraging. Like I > said, I > > know my kids aren't as sick as some of your kids are, but they do > have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot > of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are > trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this > stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 , I am North of Atlanta, and go to Austell to Atlanta Allergy and Asthma clinic and see Dr. Armstrong as our Immunologist. Who are you seeing?? We go to ish Rite for most of our specialists, i.e. ENT, GI, etc. Dr. Noevelly, Dr. , etc. send me an email deska66@...! > > > I joined this group thinking it was supposed to be for > > support. I have > > > posted a few times and gotten no reply. I realize that my kids > > aren't > > > as sick as some of the others, but none the less, do have similar > > things. > > > We have had difficulties with stuff their whole lives, and it has > > been > > > frustrating trying to get the Dr's here in GA to listen to our > > > concerns. No one would test them, even after me asking them to, for > > > any kind of immune deficiency. I have asked them a few times over > > the > > > years and they never would. So once we got our diagnosis last month, > > > and I found this group, I thought it would be a good release. And > > then > > > when I never get any replies, it is just discouraging. Like I > > said, I > > > know my kids aren't as sick as some of your kids are, but they do > > have > > > a PID, and it is all new and scary for us still. It seems that not > > > many people in GA even know about this, and we are the first in our > > > school to have this. I am having to walk the school system through > > > everything and school them about it all. My kids have missed a lot > > of > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are > > trying to > > > get 504's. > > > > > > If you guys don't think I need to be a part of your group, then I > > > understand, but can you direct me to another board? I do need a > > > support group where I can vent and talk and learn about this > > stuff. I > > > have questions and concerns and fears like everyone else with a new > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > > infections, etc I have had to learn about stuff and cope, and I just > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > > takes off against the wind, not with it. > > > --Henry Ford > > > > > > --------------------------------- > > > Be a better friend, newshound, and know-it-all with Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 --- Deska, Im sorry, Im certain Ive replied to you once or twice.....and I think you've written back to me. I remember writing to you about the tracheomalacia, bc my two boys have that. Ive been in this group for 2 yrs, and sometimes, I post and get no response. Sometimes, too many postings happen in one day, and not everyone can read thru all of them, so someones gets missed. Sometimes, I read a post and while I empathize, I might have nothing to contribute, so I stay quiet. Im sorry you feel ignored. I understand, and I want you to know I have read your posts. I was gone for a week with my daughters class from school we went camping, and now Im still trying to get caught back up on posts. valarie In , " Deska " <deska66@...> wrote: > > I joined this group thinking it was supposed to be for support. I have > posted a few times and gotten no reply. I realize that my kids aren't > as sick as some of the others, but none the less, do have similar things. > We have had difficulties with stuff their whole lives, and it has been > frustrating trying to get the Dr's here in GA to listen to our > concerns. No one would test them, even after me asking them to, for > any kind of immune deficiency. I have asked them a few times over the > years and they never would. So once we got our diagnosis last month, > and I found this group, I thought it would be a good release. And then > when I never get any replies, it is just discouraging. Like I said, I > know my kids aren't as sick as some of your kids are, but they do have > a PID, and it is all new and scary for us still. It seems that not > many people in GA even know about this, and we are the first in our > school to have this. I am having to walk the school system through > everything and school them about it all. My kids have missed a lot of > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > get 504's. > > If you guys don't think I need to be a part of your group, then I > understand, but can you direct me to another board? I do need a > support group where I can vent and talk and learn about this stuff. I > have questions and concerns and fears like everyone else with a new > diagnosis does. Through all of our stuff, tracheomalacia, heart > murmur, reflux, recurrent croup that is now asthma, recurrent ear > infections, etc I have had to learn about stuff and cope, and I just > need a place where I can find some support. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Hi Deska, I'm sorry nobody answered before, I know for me I usually don't chime in unless something hits a chord, but everyone's posts are SO helpful to me, and also as a record of these diseases - I've often felt there should be an official transcript of our messages because so many of the things that alot of people here relate to are not " official " pieces of the PID diagnosis, but people here quickly relate and say " us too! " . I do have a comment about celiac - my son went through rigorous testing for celiac and a six month gluten free trial, etc. The trial made no difference to his gi picture. He has severe " villous blunting " and other things usually associated with celiac, but without celiac. This is not unheard of with his diagnosis of CVID (a PID). It's a gi condition that mimics celiac, but isn't celiac. He gets endoscopies every six months (we have one coming up next week actually) to monitor what they now call " autoimmune enteritis " , for lack of a better term. He has had times when the biopsy shows abnormal cell activity, so they want to keep a close look. Prednisone has helped when it kicks up too much. I think probably his gi picture is the biggest " threat " for him as he doesn't get the bad lung disease commonly seen with CVID. Just something to keep in mind - I think PID's can have the signs and symptoms of celiac, but without celiac - that's my understanding anyway. blessings to everyone, Kate (mother to Ben - CVID, ALPS, Ring Chromosome 18, hearing loss, autism, cerbral palsy) & 3 " normals " > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And then > > when I never get any replies, it is just discouraging. Like I said, I > > know my kids aren't as sick as some of your kids are, but they do have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 ---Deska, When my daughter was tested for celiac, we were unable to test her with the IGA test, bc her IGA levels were too low. To my knowledge, if his IGA is low, then they would have to do a scope w/ biopsy to test accurately. I feel you......my 10 yr old daughter was just dx'd failure to thrive. She is very picky, very thin, and losing weight. It is really frustrating. We;ve been working with a new dietician, who's given me some new ideas to try. valarie > > I totally hear you on the Dr's not wanting to do anything, > especially since my kids are not in " dire " need.... and it is > frustrating and upsetting when you have to fight for everything!! > > i have 4 kids and both of the boys seem to be my biggest medical > issues. I have one son, my youngest, that was just Dx'd with SDS...but > he also has low IgG levels and with both things manages to stay sick > alot! His levels are not so low that anyone else seems too worried > about it...I made an appt to have him see my other sons allergy/immun > dr.. > > > > my oldest son has and has had since 1 yrs old low IgG levels and > now low subclass levels as well. The only reason I got our > allert/immun dr to retest was because I found his test from when he > was 1 yr and it was 1/2 what it should've been... before that she > didnt feel the need to test! we are now on track.... > > > > I am glad you posted today, because sometimes everyone needs a > reminder.. mild kids are improtant too...and for new to this parents, > we need support... > > > > April > > > > Deska <deska66@> wrote: > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And then > > when I never get any replies, it is just discouraging. Like I said, I > > know my kids aren't as sick as some of your kids are, but they do have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Thanks guys for your replies! My GI Dr did say that the low IGA levels might interfere with the testing for Celiac, but from what I read about it, he doesn't present a lot of the symptoms, our main concern is the reflux. He does want to do an endoscopy, but would rather wait until our ENT decides if he is going to do another set of tubes in the fall (even though our current set is still in ... but with more hearing damage I just don't know) My other question was this ... The immuno said for my oldest that she wanted to do the Pneumovax vaccine to check his titers, but didn't even mention it for my younger son, who has more problems, would she not need to do this for both of them??? Maybe I've just had a rough week and was overly sensitive, so I apologize as well. I've sat at home this week and asked my friend , who is also on this board, did she ever just go to her room and cry when no one else was looking. I know my kids could be worse, but this stuff can get so overwhelming when I am trying to work full time, and keep their lives as " normal " as possible, as the Dr's haven't said to limit their activities, and they are still playing baseball, etc as much as they can and doing school as much as they can. Winter sports don't go over well for my little guy, b/c generally he's too sick in the winter to participate. So my springs are so jammed packed and now working/ball schedules and now all of these appts I've just been so overwhelmed by all of it and not getting much support from my mom ... and my husband thinks it's all sort of " odd " he's not sure what he believes as far as diagnosis goes just yet. Thanks for the replies today though, I do appreciate it! Deska > > > I joined this group thinking it was supposed to be for > > support. I have > > > posted a few times and gotten no reply. I realize that my kids aren't > > > as sick as some of the others, but none the less, do have similar > > things. > > > We have had difficulties with stuff their whole lives, and it has been > > > frustrating trying to get the Dr's here in GA to listen to our > > > concerns. No one would test them, even after me asking them to, for > > > any kind of immune deficiency. I have asked them a few times over the > > > years and they never would. So once we got our diagnosis last month, > > > and I found this group, I thought it would be a good release. And then > > > when I never get any replies, it is just discouraging. Like I said, I > > > know my kids aren't as sick as some of your kids are, but they do have > > > a PID, and it is all new and scary for us still. It seems that not > > > many people in GA even know about this, and we are the first in our > > > school to have this. I am having to walk the school system through > > > everything and school them about it all. My kids have missed a lot of > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > > get 504's. > > > > > > If you guys don't think I need to be a part of your group, then I > > > understand, but can you direct me to another board? I do need a > > > support group where I can vent and talk and learn about this stuff. I > > > have questions and concerns and fears like everyone else with a new > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > > infections, etc I have had to learn about stuff and cope, and I just > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > > takes off against the wind, not with it. > > > --Henry Ford > > > > > > --------------------------------- > > > Be a better friend, newshound, and know-it-all with Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, I've been terribly behind with posts and wanted to share with you that anyone that does not get a response should not be shy to repost. : ) Many of our parents are just like you...juggling a bizillion things and read their messages when they come up for air. (I've missed most of my mail this week.) It can be upsetting when few people answer a cry for help. Please never hesitate to re-post. You said: " The immuno said for my oldest that she wanted to do the Pneumovax vaccine to check his titers, but didn't even mention it for my younger son, who has more problems... " I'm not sure of your children's ages or you're doctor's rationale for not doing any intervention (vaccine or otherwise) with your younger child yet. Generally pneumovax is given to children that are 2+ years old who are not immunocompromised or in the middle of an illness. Prevnar is generally given to children < 2 years of age. If the vaccine titers were on the " borderline " , the doctor may wait and see if the titers drop further or revaccinate. Or, if things look like a PID profile may administer antibiotics and/or IVIg. As for celiac disease, biopsy is the only way to know what's really going on. Even if you have normal IgA, a doc skilled in celiac will want confirmation by biopsy. You are correct that celiac does can manifest with really obvious sumptoms....but not always. Sometimes, it can show up as unspecific symptoms (e.g., GI pain, joint pain, infertility, etc.). We had to scope my daughter but, before we did so, I make certain that every single GI test that we ever anticipated might be needed would be done at that time (and under general anesthetic), so that we might reduce our chances of ever having her scoped again. So, I can understand your desire to talk to the other specialists first. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 HI Deska, So sorry you feel that no one is answering. I would say that weekends things can be quiet. ( I delete posts as I go) This is a VERY warm and welcoming group but it has been very quiet this week as well. Anyway WELCOME!!!! My son is 12 and I have been a part of this group since he was 3 and we started IVIg. He is now on Sub Q gammaglobulin. He has CVID common variable immune deficiency that took several years to get a complete diagnosis. He is also Bipolar and has quite a few other emotional issues. ( Sensory integrations, ADD, etc) Please feel free to ask ANY questions you might have and make sure that you contact Immune Deficiency Foundation and access and incredble array of supportive resources and printed materials you can order. This groups main page also has other resources to check into. Please do not feel that we do not care. I am not sure I saw any specific questions so fire away and we can try to be more inviting. !!!!!!!  BARBIE ????? I joined this group thinking it was supposed to be for support. I have posted a few times and gotten no reply. I realize that my kids aren't as sick as some of the others, but none the less, do have similar things. We have had difficulties with stuff their whole lives, and it has been frustrating trying to get the Dr's here in GA to listen to our concerns. No one would test them, even after me asking them to, for any kind of immune deficiency. I have asked them a few times over the years and they never would. So once we got our diagnosis last month, and I found this group, I thought it would be a good release. And then when I never get any replies, it is just discouraging. Like I said, I know my kids aren't as sick as some of your kids are, but they do have a PID, and it is all new and scary for us still. It seems that not many people in GA even know about this, and we are the first in our school to have this. I am having to walk the school system through everything and school them about it all. My kids have missed a lot of school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to get 504's. If you guys don't think I need to be a part of your group, then I understand, but can you direct me to another board? I do need a support group where I can vent and talk and learn about this stuff. I have questions and concerns and fears like everyone else with a new diagnosis does. Through all of our stuff, tracheomalacia, heart murmur, reflux, recurrent croup that is now asthma, recurrent ear infections, etc I have had to learn about stuff and cope, and I just need a place where I can find some support. ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 deska, I am also in north atlanta. I am in cumming. We too went to Atlanta allergy to start with as we thought that all the boys GI problems were related to food allergies. We were blown off by the practice (in alpharetta) and were not happy. They told us that the boys tested negative for all the allergies they tested for and to come back in 4 months. It was such a joke. After another doc ordered the immunology work up we took the results back to atlanta allergy to give them another chance and were again blown off. They told us that the boys Igg and IgA levels would surely go up in 6 months time. not to worry about it. They had less than half what they should have. We found another immunologist that saw the same test results and could not believe that we were dismissed like that by other doctors. It has been a crazy rollercoaster. We have an ent that is not great but put tubes in the boys ears before we knew about the immunology issues. As for GI we really need to see one but have not been able to get in ot see one yet as the waits are about 6-8 weeks. Our immunologist is Dr. Levy and she is good a getting answers. WE are still working on getting our answers but if it were not for her we would have nothing. On May 7, 2008, at 10:22 AM, Deska wrote: > , > > I am North of Atlanta, and go to Austell to Atlanta Allergy and Asthma > clinic and see Dr. Armstrong as our Immunologist. Who are you seeing?? > We go to ish Rite for most of our specialists, i.e. ENT, GI, etc. > Dr. Noevelly, Dr. , etc. > > send me an email deska66@...! > > > > > > I joined this group thinking it was supposed to be for > > > support. I have > > > > posted a few times and gotten no reply. I realize that my kids > > > aren't > > > > as sick as some of the others, but none the less, do have > similar > > > things. > > > > We have had difficulties with stuff their whole lives, and it > has > > > been > > > > frustrating trying to get the Dr's here in GA to listen to our > > > > concerns. No one would test them, even after me asking them > to, for > > > > any kind of immune deficiency. I have asked them a few times > over > > > the > > > > years and they never would. So once we got our diagnosis last > month, > > > > and I found this group, I thought it would be a good release. > And > > > then > > > > when I never get any replies, it is just discouraging. Like I > > > said, I > > > > know my kids aren't as sick as some of your kids are, but they > do > > > have > > > > a PID, and it is all new and scary for us still. It seems that > not > > > > many people in GA even know about this, and we are the first > in our > > > > school to have this. I am having to walk the school system > through > > > > everything and school them about it all. My kids have missed a > lot > > > of > > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are > > > trying to > > > > get 504's. > > > > > > > > If you guys don't think I need to be a part of your group, > then I > > > > understand, but can you direct me to another board? I do need a > > > > support group where I can vent and talk and learn about this > > > stuff. I > > > > have questions and concerns and fears like everyone else with > a new > > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > > murmur, reflux, recurrent croup that is now asthma, recurrent > ear > > > > infections, etc I have had to learn about stuff and cope, and > I just > > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the > airplane > > > takes off against the wind, not with it. > > > > --Henry Ford > > > > > > > > --------------------------------- > > > > Be a better friend, newshound, and know-it-all with > Mobile. > > > Try it now. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 , My sons are 10 and 6. The immuno has said that they do have a PID. They both have low IGA/IGG levels. My 6yr old also has low subclass levels and his t-cell panel levels only have 1 level that is acutally " low " and 2 that are borderline. My oldest son has the low IGA/IGG levels, but no subclass levels that are low. She has said they both have Hypogammaglobulinemia. My youngest one is the one that had tracheomalacia and the heart murmur and the reflux, and asthma ... and she started him on prophylactic antibiotics already, not IVIG. But I just thought it was odd to not even mention the Pneumovax thing for him at all yet, but automatically mention it for my oldest one. I don't really understand it all, or the process, so maybe it's just b/c I'm new to it all and don't understand the process. > > Deska, > > I've been terribly behind with posts and wanted to share with you that anyone that does not get a response should not be shy to repost. : ) Many of our parents are just like you...juggling a bizillion things and read their messages when they come up for air. (I've missed most of my mail this week.) It can be upsetting when few people answer a cry for help. Please never hesitate to re-post. > > You said: " The immuno said for my oldest that she wanted to do the Pneumovax vaccine to check his titers, but didn't even mention it for my younger son, who has more problems... " > > I'm not sure of your children's ages or you're doctor's rationale for > not doing any intervention (vaccine or otherwise) with your younger > child yet. Generally pneumovax is given to children that are 2+ years old who are not immunocompromised or in the middle of an illness. Prevnar is generally given to children < 2 years of age. If the vaccine titers were on the " borderline " , the doctor may wait and see if the titers drop further or revaccinate. Or, if things look like a PID profile may administer antibiotics and/or IVIg. > > As for celiac disease, biopsy is the only way to know what's really going on. Even if you have normal IgA, a doc skilled in celiac will want confirmation by biopsy. You are correct that celiac does can manifest with really obvious sumptoms....but not always. Sometimes, it can show up as unspecific symptoms (e.g., GI pain, joint pain, infertility, etc.). We had to scope my daughter but, before we did so, I make certain that every single GI test that we ever anticipated might be needed would be done at that time (and under general anesthetic), so that we might reduce our chances of ever having her scoped again. So, I can understand your desire to talk to the other specialists first. > > S. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Have either boys had their antibodies tested with Prevnar or Pneumovaccine. That is generally the next step in to seeing if gammaglobulin would be helpful to give them a better life. My sons sinuses have been cleaned out surgically several times due to severe sinus infections. I am not sure why the ENT would not consider rinsing them to open them up and prevent further damage. Have you heard of using nasal rinses? We have had much more help with sinus rinses at home than anything else, there are several ways to do it but basically it is like washing your hands regularly. We use a grossen hydropulse machine with a special nose tip. EASY and it goes along with brushing your teeth. (like a waterpik but with a nose attachment)  BARBIE Re: ????? April, Right! I hate having to fight for everything! my 6yr old Jayden has low IGA/IGG levels and 3 subclass def the other one is tinkering on being low, he has one t-cell level that is low, and 2 others that on on the border of being low, so the only official diagnosis she has given him is Hypogammaglobulinem ia. My oldest son, Phoenix 10yrs old, just has the IGA/IGG def. no subclass, no t-cell, but he has all fo the allergies. They both have chronic sinus infections, and according to the ct-scans, they need sinus surgery, but we're not doing that right now with all of this staph that is running rampant in GA. (I'm sure it's just as bad everywhere else too) We went to the ENT Friday and my youngest has lost even more hearing since 2yrs ago, I don't know if anything ties into that with all of this. And yesterday to the GI dr and they are now testing for Celiac disease too b/c of the low IGA and how bad his reflux still is and his picky eating habits and being on the lower end of the growth charts, even though he's not super small, he is on the lower side. Can I email you directly? my email is deska66 (DOT) com ... > I joined this group thinking it was supposed to be for support. I have > posted a few times and gotten no reply. I realize that my kids aren't > as sick as some of the others, but none the less, do have similar things. > We have had difficulties with stuff their whole lives, and it has been > frustrating trying to get the Dr's here in GA to listen to our > concerns. No one would test them, even after me asking them to, for > any kind of immune deficiency. I have asked them a few times over the > years and they never would. So once we got our diagnosis last month, > and I found this group, I thought it would be a good release. And then > when I never get any replies, it is just discouraging. Like I said, I > know my kids aren't as sick as some of your kids are, but they do have > a PID, and it is all new and scary for us still. It seems that not > many people in GA even know about this, and we are the first in our > school to have this. I am having to walk the school system through > everything and school them about it all. My kids have missed a lot of > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > get 504's. > > If you guys don't think I need to be a part of your group, then I > understand, but can you direct me to another board? I do need a > support group where I can vent and talk and learn about this stuff. I > have questions and concerns and fears like everyone else with a new > diagnosis does. Through all of our stuff, tracheomalacia, heart > murmur, reflux, recurrent croup that is now asthma, recurrent ear > infections, etc I have had to learn about stuff and cope, and I just > need a place where I can find some support. > > > > > > > When everything seems to be going against you, remember the airplane takes off against the wind, not with it. > --Henry Ford > > ------------ --------- --------- --- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 , We just saw Dr at ish Rite .. the wait time was not long there. You should call there and try to get them in with him. He seems pretty good, however, I don't have anything to compare it too. Dr. Armstrong has been great with my boys at Atlanta Allergy, I don't which Dr you saw there, but she is good with my kiddos. I have thought about getting a second opinion, just to have a second opinion, but don't really want to go through all of this again right now, ya know? I am in sville, though, by the way. I think I left that off before. Feel free to call me though, I would love to talk to someone near by. 770-910-2321 > > > > > I joined this group thinking it was supposed to be for > > > > support. I have > > > > > posted a few times and gotten no reply. I realize that my kids > > > > aren't > > > > > as sick as some of the others, but none the less, do have > > similar > > > > things. > > > > > We have had difficulties with stuff their whole lives, and it > > has > > > > been > > > > > frustrating trying to get the Dr's here in GA to listen to our > > > > > concerns. No one would test them, even after me asking them > > to, for > > > > > any kind of immune deficiency. I have asked them a few times > > over > > > > the > > > > > years and they never would. So once we got our diagnosis last > > month, > > > > > and I found this group, I thought it would be a good release. > > And > > > > then > > > > > when I never get any replies, it is just discouraging. Like I > > > > said, I > > > > > know my kids aren't as sick as some of your kids are, but they > > do > > > > have > > > > > a PID, and it is all new and scary for us still. It seems that > > not > > > > > many people in GA even know about this, and we are the first > > in our > > > > > school to have this. I am having to walk the school system > > through > > > > > everything and school them about it all. My kids have missed a > > lot > > > > of > > > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are > > > > trying to > > > > > get 504's. > > > > > > > > > > If you guys don't think I need to be a part of your group, > > then I > > > > > understand, but can you direct me to another board? I do need a > > > > > support group where I can vent and talk and learn about this > > > > stuff. I > > > > > have questions and concerns and fears like everyone else with > > a new > > > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > > > murmur, reflux, recurrent croup that is now asthma, recurrent > > ear > > > > > infections, etc I have had to learn about stuff and cope, and > > I just > > > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the > > airplane > > > > takes off against the wind, not with it. > > > > > --Henry Ford > > > > > > > > > > --------------------------------- > > > > > Be a better friend, newshound, and know-it-all with > > Mobile. > > > > Try it now. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Michele, I know you have posted before regarding inaccurate allergy testing. I brought this up at my Immunologists office the other day. The NP seemed to thing that the RAST testing should be accurate. I seem to think like what you have been saying that they would not be accurate based on poor immune response. Do you know of any articles that might give us some further back up. Lucas had 4+++++ allergies as an infant an toddler. He had not been tested for years but with Gammaglobulin many of his problems were moderated. ( hives, eczema, severe sinus , as well as many of his gut problems that he had. etc) but he recently had an endoscopy and it showed on 2s fro many many foods. as well as his gut looked much much better than before. But.......his biopsies showed some  inflammation.  BARBIE Re: ????? April, Right! I hate having to fight for everything! my 6yr old Jayden has low IGA/IGG levels and 3 subclass def the other one is tinkering on being low, he has one t-cell level that is low, and 2 others that on on the border of being low, so the only official diagnosis she has given him is Hypogammaglobulinem ia. My oldest son, Phoenix 10yrs old, just has the IGA/IGG def. no subclass, no t-cell, but he has all fo the allergies. They both have chronic sinus infections, and according to the ct-scans, they need sinus surgery, but we're not doing that right now with all of this staph that is running rampant in GA. (I'm sure it's just as bad everywhere else too) We went to the ENT Friday and my youngest has lost even more hearing since 2yrs ago, I don't know if anything ties into that with all of this. And yesterday to the GI dr and they are now testing for Celiac disease too b/c of the low IGA and how bad his reflux still is and his picky eating habits and being on the lower end of the growth charts, even though he's not super small, he is on the lower side. Can I email you directly? my email is deska66 (DOT) com <mailto:deska66% 40> ... > I joined this group thinking it was supposed to be for support. I have > posted a few times and gotten no reply. I realize that my kids aren't > as sick as some of the others, but none the less, do have similar things. > We have had difficulties with stuff their whole lives, and it has been > frustrating trying to get the Dr's here in GA to listen to our > concerns. No one would test them, even after me asking them to, for > any kind of immune deficiency. I have asked them a few times over the > years and they never would. So once we got our diagnosis last month, > and I found this group, I thought it would be a good release. And then > when I never get any replies, it is just discouraging. Like I said, I > know my kids aren't as sick as some of your kids are, but they do have > a PID, and it is all new and scary for us still. It seems that not > many people in GA even know about this, and we are the first in our > school to have this. I am having to walk the school system through > everything and school them about it all. My kids have missed a lot of > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > get 504's. > > If you guys don't think I need to be a part of your group, then I > understand, but can you direct me to another board? I do need a > support group where I can vent and talk and learn about this stuff. I > have questions and concerns and fears like everyone else with a new > diagnosis does. Through all of our stuff, tracheomalacia, heart > murmur, reflux, recurrent croup that is now asthma, recurrent ear > infections, etc I have had to learn about stuff and cope, and I just > need a place where I can find some support. > > > > > > > When everything seems to be going against you, remember the airplane takes off against the wind, not with it. > --Henry Ford > > ------------ --------- --------- --- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 I think Ursula is from Georgia is she not? I know she goes to DUKE as well as EMORY and I think they are some of the best programs in the year. Â BARBIEÂ Re: Re: ????? Deska, I am in GA too and am having a very hard time. What your kids are going through sounds exactally like my twin boys 15 months old. They have very simmilar test results. Are you near the Atlanta area? We are having to fight wiht the schools for our other 2 daughters as we are afraid of them bringing home the germs from school to their brothers. It is rough. It would be nice to talk ot someone who lives in this state and can navigate the waters with us.. On May 7, 2008, at 8:52 AM, Deska wrote: > April, > > Right! I hate having to fight for everything! my 6yr old Jayden has > low IGA/IGG levels and 3 subclass def the other one is tinkering on > being low, he has one t-cell level that is low, and 2 others that on > on the border of being low, so the only official diagnosis she has > given him is Hypogammaglobulinem ia. My oldest son, Phoenix 10yrs old, > just has the IGA/IGG def. no subclass, no t-cell, but he has all fo > the allergies. They both have chronic sinus infections, and according > to the ct-scans, they need sinus surgery, but we're not doing that > right now with all of this staph that is running rampant in GA. (I'm > sure it's just as bad everywhere else too) > > We went to the ENT Friday and my youngest has lost even more hearing > since 2yrs ago, I don't know if anything ties into that with all of > this. And yesterday to the GI dr and they are now testing for Celiac > disease too b/c of the low IGA and how bad his reflux still is and his > picky eating habits and being on the lower end of the growth charts, > even though he's not super small, he is on the lower side. > > Can I email you directly? my email is deska66 (DOT) com ... > > > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids > aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has > been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over > the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And > then > > when I never get any replies, it is just discouraging. Like I > said, I > > know my kids aren't as sick as some of your kids are, but they do > have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot > of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are > trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this > stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > ------------ --------- --------- --- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Barbie -- They haven't really mentioned anything as far treatment except for the amoxicillin for my youngest son. Yesterday at the GI Dr, even he said something about the lymph nodes in his neck still being swollen. And he's had a low grade fever for a week now, and I call the ped and they tell me to call the immuno and then they tell me to call the ped, I feel like I'm getting the runaround. What do you guys do about that? And like his hearing issues, he still has the last set of tubes, do hearing problems go along with this or is it just b/c they have more ear infections and it's just a result of? Deska > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And then > > when I never get any replies, it is just discouraging. Like I said, I > > know my kids aren't as sick as some of your kids are, but they do have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > ------------ --------- --------- --- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, Maybe everyone would benefit from an Activities break. I only allow my children one thing per season. First with all the medical appts, the amount of time getting everywhere, and etc I am too tired. I know that my kids have really benefited from this. This is pretty common for larger families due to money and the time resources but I think parents with only a couple of kids have a tendancy to try to give their kids the " big family benefits " It is nice to just have an " evening home " rather than running everywhere. Works for us. Also if you are wiped out then it is hard to give back to our kids. As far as the Pneumovax I would ask . Maybe she just forgot. Always ask that is our job to advocate for our kids and if we do not understand in anyway we as far as I am concerned MUST ask to manage their care appropriately. Also the antibody testing is the next part of the testing ( or the standard practice) for most immunologist. It takes several months to get back but it is good info.  BARBIE Re: ????? Thanks guys for your replies! My GI Dr did say that the low IGA levels might interfere with the testing for Celiac, but from what I read about it, he doesn't present a lot of the symptoms, our main concern is the reflux. He does want to do an endoscopy, but would rather wait until our ENT decides if he is going to do another set of tubes in the fall (even though our current set is still in ... but with more hearing damage I just don't know) My other question was this ... The immuno said for my oldest that she wanted to do the Pneumovax vaccine to check his titers, but didn't even mention it for my younger son, who has more problems, would she not need to do this for both of them??? Maybe I've just had a rough week and was overly sensitive, so I apologize as well. I've sat at home this week and asked my friend , who is also on this board, did she ever just go to her room and cry when no one else was looking. I know my kids could be worse, but this stuff can get so overwhelming when I am trying to work full time, and keep their lives as " normal " as possible, as the Dr's haven't said to limit their activities, and they are still playing baseball, etc as much as they can and doing school as much as they can. Winter sports don't go over well for my little guy, b/c generally he's too sick in the winter to participate. So my springs are so jammed packed and now working/ball schedules and now all of these appts I've just been so overwhelmed by all of it and not getting much support from my mom ... and my husband thinks it's all sort of " odd " he's not sure what he believes as far as diagnosis goes just yet. Thanks for the replies today though, I do appreciate it! Deska > > > I joined this group thinking it was supposed to be for > > support. I have > > > posted a few times and gotten no reply. I realize that my kids aren't > > > as sick as some of the others, but none the less, do have similar > > things. > > > We have had difficulties with stuff their whole lives, and it has been > > > frustrating trying to get the Dr's here in GA to listen to our > > > concerns. No one would test them, even after me asking them to, for > > > any kind of immune deficiency. I have asked them a few times over the > > > years and they never would. So once we got our diagnosis last month, > > > and I found this group, I thought it would be a good release. And then > > > when I never get any replies, it is just discouraging. Like I said, I > > > know my kids aren't as sick as some of your kids are, but they do have > > > a PID, and it is all new and scary for us still. It seems that not > > > many people in GA even know about this, and we are the first in our > > > school to have this. I am having to walk the school system through > > > everything and school them about it all. My kids have missed a lot of > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > > get 504's. > > > > > > If you guys don't think I need to be a part of your group, then I > > > understand, but can you direct me to another board? I do need a > > > support group where I can vent and talk and learn about this stuff. I > > > have questions and concerns and fears like everyone else with a new > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > > infections, etc I have had to learn about stuff and cope, and I just > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > > takes off against the wind, not with it. > > > --Henry Ford > > > > > > ------------ --------- --------- --- > > > Be a better friend, newshound, and know-it-all with Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 No not all of our kids have hearing problems. It is generally due to chronic ear and sinus infections. My son had 22 ear infections before his 2nd birthday and one antibiotic after another. One of the tell tell signs of an immune system not working properly is that a single course and many times repeated courses of antibiotics do not clear the infections. Another one in some circumstances is that some kids do not get enlarged lymph nodes or even run fevers when other kids would . That said there are I think I have heard over 174 different immune disorders now but many of them are lumped into larger categories because the field is so new. We are so fortunate to have the IDF and to have NIH really trying identify many of the differences. So.... it is not unusual for doctors to have very little info regarding these situations. Many Allergist have minimal training in regards to Immunology and if they did not study in the past 15 to 20 years as a doctor and has not spent time updating their training then they do not know much more and in some circumstances less than those of us who have been saturated in the field and getting accurate info from IDF, Jeffery Modell Foundation etc. So if those that are putting out the shingle as a AAI or ENT do not know much then think about where Family Practice and Pediatricians and GI doctors are with their training. I say all of this to say the BEST place to get care is from a Dr. who is immersed in the field. You are fortunate to be near a good center such as DUKE that is working on the edge of the field. One option is to call the IDF and get a physcian referal and get the usual Guidelines for Care in immune deficiencies. I hope this helps. Â BARBIEÂ Re: ????? Barbie -- They haven't really mentioned anything as far treatment except for the amoxicillin for my youngest son. Yesterday at the GI Dr, even he said something about the lymph nodes in his neck still being swollen. And he's had a low grade fever for a week now, and I call the ped and they tell me to call the immuno and then they tell me to call the ped, I feel like I'm getting the runaround. What do you guys do about that? And like his hearing issues, he still has the last set of tubes, do hearing problems go along with this or is it just b/c they have more ear infections and it's just a result of? Deska > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And then > > when I never get any replies, it is just discouraging. Like I said, I > > know my kids aren't as sick as some of your kids are, but they do have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > ------------ --------- --------- --- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 I had to run out and am at urgent care now. Jayden came home crying in pain with his head and his fever was up. I will reply more when I get home. Thanks for all of the response. On May 7, 2008, at 4:23 PM, Barbara Jimenez <mother5590@...> wrote: No not all of our kids have hearing problems. It is generally due to chronic ear and sinus infections. My son had 22 ear infections before his 2nd birthday and one antibiotic after another. One of the tell tell signs of an immune system not working properly is that a single course and many times repeated courses of antibiotics do not clear the infections. Another one in some circumstances is that some kids do not get enlarged lymph nodes or even run fevers when other kids would . That said there are I think I have heard over 174 different immune disorders now but many of them are lumped into larger categories because the field is so new. We are so fortunate to have the IDF and to have NIH really trying identify many of the differences. So.... it is not unusual for doctors to have very little info regarding these situations. Many Allergist have minimal training in regards to Immunology and if they did not study in the past 15 to 20 years as a doctor and has not spent time updating their training then they do not know much more and in some circumstances less than those of us who have been saturated in the field and getting accurate info from IDF, Jeffery Modell Foundation etc. So if those that are putting out the shingle as a AAI or ENT do not know much then think about where Family Practice and Pediatricians and GI doctors are with their training. I say all of this to say the BEST place to get care is from a Dr. who is immersed in the field. You are fortunate to be near a good center such as DUKE that is working on the edge of the field. One option is to call the IDF and get a physcian referal and get the usual Guidelines for Care in immune deficiencies. I hope this helps. BARBIE Re: ????? Barbie -- They haven't really mentioned anything as far treatment except for the amoxicillin for my youngest son. Yesterday at the GI Dr, even he said something about the lymph nodes in his neck still being swollen. And he's had a low grade fever for a week now, and I call the ped and they tell me to call the immuno and then they tell me to call the ped, I feel like I'm getting the runaround. What do you guys do about that? And like his hearing issues, he still has the last set of tubes, do hearing problems go along with this or is it just b/c they have more ear infections and it's just a result of? Deska > > I joined this group thinking it was supposed to be for > support. I have > > posted a few times and gotten no reply. I realize that my kids aren't > > as sick as some of the others, but none the less, do have similar > things. > > We have had difficulties with stuff their whole lives, and it has been > > frustrating trying to get the Dr's here in GA to listen to our > > concerns. No one would test them, even after me asking them to, for > > any kind of immune deficiency. I have asked them a few times over the > > years and they never would. So once we got our diagnosis last month, > > and I found this group, I thought it would be a good release. And then > > when I never get any replies, it is just discouraging. Like I said, I > > know my kids aren't as sick as some of your kids are, but they do have > > a PID, and it is all new and scary for us still. It seems that not > > many people in GA even know about this, and we are the first in our > > school to have this. I am having to walk the school system through > > everything and school them about it all. My kids have missed a lot of > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > get 504's. > > > > If you guys don't think I need to be a part of your group, then I > > understand, but can you direct me to another board? I do need a > > support group where I can vent and talk and learn about this stuff. I > > have questions and concerns and fears like everyone else with a new > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > infections, etc I have had to learn about stuff and cope, and I just > > need a place where I can find some support. > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > takes off against the wind, not with it. > > --Henry Ford > > > > ------------ --------- --------- --- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Deska, Sorry, I missed that your younger son was 6 yrs. It is also peculiar to me why they did not address pneumovax titers/vaccination--given that his diagnosis is hypogamma. There are a few Georgia families here and it would be nice if you could connect with them. As for GI issues, I'm not sure about your options in GA. Maybe others know? It does occur to me that you might benefit from being seen at a *comprehensive* facility -- one that can treat the GI + immune issues. For example, CCHMC (Cincinnati) has a fine peds GI department. People on this list have traveled there for care. One of my peers used Dr. Cotton (CCHMC surgeon) for surgery on her son's trachea at age two (had stridor and was aspirating since birth.). They also have a strong immunology and allergy department, if you are considering another opinion. mom to Dani, 6, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 We're from right below Macon. We've seen Jeff in the past but had a difference of opinion and see a GI at Emory Children's center that deals with PID/GI issues. She's also a good motility doctor. Macey's immunologist is Kobrynski at the same clinic. Does your son see anyone at Sibley Heart center for the murmur? I've heard Dr. Levy lecture for the IDF at a Southeastern Family retreat in Atlanta probably about 3 or so years ago. Liked her alot. I wish I could get my husband to see her (he also has CVID). I would encourage you to find a good primary doctor (pediatrician) who can coordinate all of these doctors and allow you to be Mom. I'm hoping to be able to get together a Georgia family meeting for the IDF sometime in the Fall. Plus the IDF's national conference is in June 2009 at Walt Disney World so start thinking about going to that. www.primaryimmune.org Meanwhile if you want a second opinion please know that Dr. K is a wonderful resource. She'd be fine with evaluating him and releasing him to a more local doc or taking them on herself. Ursula - mom to (15) and Macey (12, CVID) http://www.primaryimmune.org http://www.jmfworld.org http://caringbridge.org/ga/macey/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 , I'm wondering if it's b/c he's been so sick still and having the fevers and infections that she's trying to get under control??? I don't know if we have any comprehensive facilities. I'll have to check into that. I'd like to be able to go to one place and get everything checked. That would make life so much easier. Our Tracheomalacia has gotten better now, finally, but he still gets croup/asthma a lot. Luckily the pulmicort flexhaler has been a life saver! thanks for your advice! Deska mom to Jayden 6, Phoenix 10 > > Deska, > > Sorry, I missed that your younger son was 6 yrs. It is also peculiar to me why they did not address pneumovax titers/vaccination--given that his diagnosis is hypogamma. > > There are a few Georgia families here and it would be nice if you could connect with them. > > As for GI issues, I'm not sure about your options in GA. Maybe others know? It does occur to me that you might benefit from being seen at a > *comprehensive* facility -- one that can treat the GI + immune issues. > > For example, CCHMC (Cincinnati) has a fine peds GI department. People on this list have traveled there for care. One of my peers used Dr. Cotton (CCHMC surgeon) for surgery on her son's trachea at age two (had stridor and was aspirating since birth.). They also have a strong immunology and allergy department, if you are considering another opinion. > > > mom to Dani, 6, CVID > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Ursula, I kind of want a second opinion just b/c of the newness of it and the differing opinions on everything. I hate to think about doing all of this all over again, but want a good feeling about everything too. Does she have a really long wait? Do you know? I wonder how that would work with our insurance? I'll have to check into it. Dr. Levy or the other one either one. I'm already driving to Austell, so the Perimeter wouldn't be that far. Thanks for all the info again! Deska > > We're from right below Macon. We've seen Jeff in the past but had a difference of opinion and see a GI at Emory Children's center that deals with PID/GI issues. She's also a good motility doctor. Macey's immunologist is Kobrynski at the same clinic. > > Does your son see anyone at Sibley Heart center for the murmur? I've heard Dr. Levy lecture for the IDF at a Southeastern Family retreat in Atlanta probably about 3 or so years ago. Liked her alot. I wish I could get my husband to see her (he also has CVID). > > I would encourage you to find a good primary doctor (pediatrician) who can coordinate all of these doctors and allow you to be Mom. > > I'm hoping to be able to get together a Georgia family meeting for the IDF sometime in the Fall. Plus the IDF's national conference is in June 2009 at Walt Disney World so start thinking about going to that. www.primaryimmune.org > > Meanwhile if you want a second opinion please know that Dr. K is a wonderful resource. She'd be fine with evaluating him and releasing him to a more local doc or taking them on herself. > > Ursula - mom to (15) and Macey (12, CVID) > http://www.primaryimmune.org > http://www.jmfworld.org > http://caringbridge.org/ga/macey/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 ---Deska, you dont need a script for sinus rinses, you can buy them OTC. I bought ours at Rite Aid, I bought the Neilmed brand, a low pressure spray bottle, you mix in sterile water and a little packet that comes with it, stand over the sink and spray it up there. I have four kids, the three oldest(12,10,8) can all do it fine, and on their own. My youngest(6) cant yet but thats bc he cant figure out how to breathe thru his mouth, so he gets it going down his throat. We're working on it, though. Its quite cheap, and easy, and it works REALLY WELL. My oldest daughter has huge sinus problems, for yrs, she hasnt been able to sleep laying down bc her nose gets so stuffy and she is very prone to sinus infections. She loves doing the sinus rinses, it really helps. Cant hurt to try, right? valarie In , " Deska " <deska66@...> wrote: > > Barbie -- > > They haven't really mentioned anything as far treatment except for the > amoxicillin for my youngest son. Yesterday at the GI Dr, even he said > something about the lymph nodes in his neck still being swollen. And > he's had a low grade fever for a week now, and I call the ped and they > tell me to call the immuno and then they tell me to call the ped, I > feel like I'm getting the runaround. What do you guys do about that? > > And like his hearing issues, he still has the last set of tubes, do > hearing problems go along with this or is it just b/c they have more > ear infections and it's just a result of? > > Deska > > > > > > I joined this group thinking it was supposed to be for > > support. I have > > > posted a few times and gotten no reply. I realize that my kids aren't > > > as sick as some of the others, but none the less, do have similar > > things. > > > We have had difficulties with stuff their whole lives, and it has been > > > frustrating trying to get the Dr's here in GA to listen to our > > > concerns. No one would test them, even after me asking them to, for > > > any kind of immune deficiency. I have asked them a few times over the > > > years and they never would. So once we got our diagnosis last month, > > > and I found this group, I thought it would be a good release. And then > > > when I never get any replies, it is just discouraging. Like I said, I > > > know my kids aren't as sick as some of your kids are, but they do have > > > a PID, and it is all new and scary for us still. It seems that not > > > many people in GA even know about this, and we are the first in our > > > school to have this. I am having to walk the school system through > > > everything and school them about it all. My kids have missed a lot of > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are trying to > > > get 504's. > > > > > > If you guys don't think I need to be a part of your group, then I > > > understand, but can you direct me to another board? I do need a > > > support group where I can vent and talk and learn about this stuff. I > > > have questions and concerns and fears like everyone else with a new > > > diagnosis does. Through all of our stuff, tracheomalacia, heart > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear > > > infections, etc I have had to learn about stuff and cope, and I just > > > need a place where I can find some support. > > > > > > > > > > > > > > > > > > > > > When everything seems to be going against you, remember the airplane > > takes off against the wind, not with it. > > > --Henry Ford > > > > > > ------------ --------- --------- --- > > > Be a better friend, newshound, and know-it-all with Mobile. > > Try it now. > > > > > > Quote Link to comment Share on other sites More sharing options...
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