Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Quoting Dale Weatherford <dale@...>: > Dale, After reading this post I am so glad that I have an appt for with Dr. Shapiro. I asked Dr. K what diagnosis do you call this...and he just listed the different things. 's iga is low his secretory iga is 0.1 which he said is essentially nothing because nl is 6.2-14.5 per our lab. His igg is on the low side of normal and now the subclass three is low. does have low t cells, low c4 and iron deficiency. I'm trying to put it all together and know that there haven't been any titers to the prevnar done, but he made reference to the fact that doesn't have a titer to the chicken pox vaccine. I had titers drawn for the dpt shot as we had an epidemic of whooping cough up here in ND with over 600 cases documented in the state, most of them in Minot where my parents are from. My ped had trouble reading/interpreting the results from Mayo regarding the titers and I don't have copies of them to give to you...but it appears he does have coverage for those things. I am anxiously awaiting the appt with Shapiro and see what course of action we really should take. has large mouth sores on each of his cheeks, he was really restless last night and we ended up sleeping in the recliner from 3-6 am. He sounds like he's getting stuffy, so I suppose its time to start another sinus infection....its been a little over a week now without symptoms. Any thoughts or suggestions for questions would be helpful. I have pulled your post re: how to prepare for an appt and pretty much have all that information. I have some other questions regarding 's other condition of cyclic neutropenia and don't know what Dr. Shapiro will say about that. His counts have seemed pretty stable, we haven't caught a low since last Feb. but I'm still concerned regarding how much acyclovir he has recieved and we can't seem to get the sores under control. I have a child who is prone to open areas in his mouth and then no secretory iga, so he can't even fight off the normal flora in the mouth.....sometimes I wonder how he doesn't get sicker than he is. A note to the other new people. I joined this group about two weeks ago and feel that they are a bunch of great people. I can't believe the amount of support and encouragement out there. I finally don't feel like such a paranoid mommy. We have all felt that way....we don't want to have to deal with a chronic illness, but are thankful when we get a diagnosis and have a label to hang our guilt. I went to a workshop this spring by Dr. Louis Rosetti who is a pediatric speech and language pathologist/child development specialist and he really talks about how parents of " damaged children " (please don't take offense to that comment, but that is his word and he deals with the very complex congenital conditions) need to get a label, it allows them a place to Hang their guilt and still love their child. I think that this is an appropriate statement for our children as well. Getting a diagnosis, no matter what allows us the opportunity to then finally move forward. Welcome to the group. , age 2, cyclic neutropenia, igg def, secretory iga def, iron def- resolved, low t cells, low complement..Cute kid. > > > > > from Dale, Mom to Katy, CVID, age 20 > > > > Dayann, I know it's a very scary thing to deal with right now. But > > what you have described sounds like what is called a Primary Immune > > Deficiency or PID. That means that it is genetic -- either heriditary > > or not -- but not something you can catch or give to someone else. HIV > > is a virus that is contagious and can be caught -- but the likelihood of > > your daughter catching HIV would be very slim unless you or your husband > > have it. AND -- HIV doesn't affect IgG and IgA levels as far as I know > > -- I believe it primarily affects the T-cells (but I may be wrong). > > Outsiders often accuse our children of having HIV because they are not > > educated and know that our kids are sick all the time, etc. but it's a > > wrong assumption. > > > > What you will begin to learn is that PID is a very serious complication > > -- but with proper treatment, most people live fairly normally. But, > > it will always be a challenge to find knowledgable doctors and proper > > treatment, but I pray that that will keep improving. I volunteer for > > IDF because I believe their goals to educate doctors and the public > > about PID is worth my time and effort. When Katy was first diagnosed > > we only knew of 5 locations in the US that were capable of treating PID > > ( we found out later that number was out-of-date). That number has > > multiplied terrifically in the last 10 years. It's gone from being a > > very little know and understood disease to something that many doctors > > have at least heard of even though 99% of pediatricians and primary care > > physicians probably have never seen an actual case. > > > > You will remain a neat freak for the rest of your life! Trust me -- it > > doesn't go away just because Katy's out of the house now. But, after a > > while, it just becomes normal. I'm actually surprised when young Moms > > don't pay attention to their kids licking the stair rail, etc. It just > > feels normal now. You'll learn the vocabulary and words you wish you'd > > never heard. > > > > One of the things that is dangerous on a list like this is feeling that > > everyone is on the same path and if someone's child is hospitalized for > > this -- then eventually my child will hit that stage. Not true!!! > > While everyone on this list has a PID kid. Not even everyone with CVID > > takes the same journey. For example, my Katy has never been > > hospitalized in her life (except day visits for endoscopes, etc.) > > She's never had a life-threatening illness -- just chronic illness. > > Other people seem to live at the hospital -- some for many months at a > > time. Every child is different. Someday, I believe, with enough > > research, we'll understand why CVID looks so many different ways -- I > > think CVID will be broken down into 5 or 6 different diagnosis -- but > > for now CVID stands for anyone with IgG plus one other deficiency or > > someone with a poor response to vaccinations indicating that their IgG > > is not working well and there's probably other definitions floating > > around. > > > > Just for clarification. Your daughter should only be given the > > diagnosis of Selective IgA Defiency if her IgA is 0 (not low, but > > entirely missing). > > > > Please feel free to ask questions. We'll all try to jump in and help > > you sort it all out. Having a chronically ill child is not a picnic! > > But there are specific joys involved such as spending a LOT of time with > > your child! > > > > In His service, > > Dale > > > > > > > > > > > > Dayann wrote: > > > > >Hi Dale > > > > > >I already have been on the IDF website and I've called and left a > > >message with someone and also sent an e-mail to someone else and I'm > > >waiting to see what response I get. In fact I learned about this > > > group from IDF. I don't understand a lot of what I am reading > > >and some of it is scaring me to be quite honest, but I am glad all > > >the posts that have been written are here because I know that I may > > >understand at some point and I like that I can refer back to prior > > >posts and get a little bit of guidance that way. > > > > > >I am really frustrated right now because I just want to know what > > >precisely my child has and now I am also terrified that it may be HIV > > >(although everyone says it isn't she hasn't yet been tested for HIV > > >so I won't be calmed on that issue until we get a blood test that > > >says negative on it). > > > > > >So far I see that people are saying the toughest part is getting a > > >clear diagnosis and then a consistent regiment of care. So I am in > > >that stage now. I just want to know for certain what this is so I > > >can know what to do to help my daughter be well. Our next > > >appointment with the specialist is on Monday so let's hope that goes > > >well. > > > > > >Thanks, > > >Dayann > > > > > > > > > > > > > > > > > > > > >>from Dale, Mom to Katy, age 20 > > >> > > >> > > >> > > > > > > > > > > > >>Dayann, Welcome to the group. One of the first things I always > > >>recommend to newly diagnosed families is to contact the Immune > > >>Deficiency Foundation at 1-800-296-4433 and ask them to send you > > >> > > >> > > >any > > > > > > > > >>educational material that is available and to put you on the list > > >> > > >> > > >for > > > > > > > > >>their newsletters. They have a lot of material that will help you > > >>understand immune deficiencies. You can also ask if there are any > > >> > > >> > > >Peer > > > > > > > > >>Contacts in your area so that you can talk to someone close by. > > >> > > >>I don't have a lot of time -- but just wanted to share that my > > >> > > >> > > >daughter > > > > > > > > >>became ill at age 11, was diagnosed with CVID at 13 and started > > >> > > >> > > >IVIG. > > > > > > > > >> She is now a Junior in college. She gets her IVIG in her dorm > > >> > > >> > > >room > > > > > > > > >>(with a visiting nurse), she parties, she dates, she has to watch > > >> > > >> > > >that > > > > > > > > >>she doesn't overload her schedule and allows time to rest but other > > >> > > >> > > >than > > > > > > > > >>that, she takes a full load and no one except her close friends > > >> > > >> > > >know > > > > > > > > >>that she's got a chronic illness. She catches a lot of colds but > > >> > > >> > > >so > > > > > > > > >>far has only had one sinus infection since starting college. She > > >> > > >> > > >deals > > > > > > > > >>with chronic upset gastro -- but that's the point -- she deals with > > >> > > >> > > >it. > > > > > > > > >> And she has chronic sinusitis - and she deals with that. So, > > >> > > >> > > >yes, the > > > > > > > > >>diagnosis stage takes forever. The finding the proper treatment > > >> > > >> > > >and > > > > > > > > >>starting that regiment takes forever -- but for the most part you > > >> > > >> > > >find a > > > > > > > > >>new normal and accept it and move on to a full and fulfilling > > >> > > >> > > >life. God > > > > > > > > >>has been very good to us in letting Katy fulfill her dreams. She > > >> > > >> > > >had to > > > > > > > > >>quit gymnastics -- but that opened other doors for her and she > > >> > > >> > > >doesn't > > > > > > > > >>regret it now. And next week she defends her major (art) and has > > >> > > >> > > >to > > > > > > > > >>endure the waiting to know whether she will be forced to change > > >> > > >> > > >majors > > > > > > > > >>or allowed to continue with her dreams. She's so nervous!!!! See - > > >> > > >> > > >- > > > > > > > > >>perfectly normal stuff! > > >> > > >>Gotta run, hope that encourages you. > > >>In His service, > > >>Dale > > >> > > >> > > > > > > > > > > > > > > >This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > > > > >To unsubscribe -unsubscribegroups (DOT) > > >To search group archives go to: > /messages > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 In a message dated 10/1/2004 9:20:15 PM Eastern Daylight Time, dale@... writes: Just for clarification. Your daughter should only be given the diagnosis of Selective IgA Defiency if her IgA is 0 (not low, but entirely missing). I didn't know it was Selective if it was totally missing. Britt is Selective. Hmm. I guess we learn something everday. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Not according to the specialist. He said that some IgA deficient people make NO IgA at all (IgA level zero " 0 " )while others make only small amounts. The written diagnosis is IgA deficiency, and she has the symptoms and when I checked the list of 10 signs of PID (www..com), she has 4 out of the 10 so far. Thank you for the feedback, though. I will ask the specialist to clarify the diagnosis to be sure I understand what is on her chart in case you are right and perhaps there is something else going on. > > In a message dated 10/1/2004 9:20:15 PM Eastern Daylight Time, > dale@x... writes: > > Just for clarification. Your daughter should only be given the > diagnosis of Selective IgA Defiency if her IgA is 0 (not low, but > entirely missing). > > > > I didn't know it was Selective if it was totally missing. Britt is > Selective. Hmm. I guess we learn something everday. > > Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 I'm in New York City. And thank you for responding to that request. /Dayann > anyone in this newsgroup knows of a support group for parents of > kids with PID in the New York City area I'd be glad to know where one > meets. > > Hi Dayann, Welcome to the group. > Where are you located? We are south of Albany NY. > mom to - CVID, asthma. GERD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 http://www.ohiohealth.com/healthreference/reference/CC36A0E3-FE25- 4DF4-AC3875A3F92B283D.htm?category=questions The above link from the Mayo Clinic says that you can be Selective IgA deficient even if you do not have zero IgA. So although I appreciate your help I think I'm going to go with the specialist we're seeing and believe his diagnosis of Selective IgA for our child even though her IgA level was not at zero. Are there any other parents here whose children were diagnosed with Selective IgA Deficiency but did not have zero IgA? I'd like to hear about the diagnostic process and what treatments helped your child. Thanks, Dayann > > In a message dated 10/1/2004 9:20:15 PM Eastern Daylight Time, > dale@x... writes: > > Just for clarification. Your daughter should only be given the > diagnosis of Selective IgA Defiency if her IgA is 0 (not low, but > entirely missing). > > > > I didn't know it was Selective if it was totally missing. Britt is > Selective. Hmm. I guess we learn something everday. > > Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Sorry the link doesn't work because of the text wrapping but if you want to see the information I posted from the Mayo Clinic just copy the full link line and paste it up into your browser address line, and hit enter and that will take you to the site in question. Thanks again, Dayann > > > > In a message dated 10/1/2004 9:20:15 PM Eastern Daylight Time, > > dale@x writes: > > > > Just for clarification. Your daughter should only be given the > > diagnosis of Selective IgA Defiency if her IgA is 0 (not low, but > > entirely missing). > > > > > > > > I didn't know it was Selective if it was totally missing. Britt is > > Selective. Hmm. I guess we learn something everday. > > > > Janet, mom to Brittany, CVID, age 13 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 I found another really good link, for parents who maybe are interested, although I'm assuming alot of you already know this stuff: http://npi.jmfworld.org/patienttopatient/index.cfm? section=patienttopatient & content=syndromes & area=2 & CFID=1293888 & CFTOKEN =7967458 How does someone eliminate gluten from a child's diet? I notice that was mentioned in the above article. /Dayann > > > > > > In a message dated 10/1/2004 9:20:15 PM Eastern Daylight Time, > > > dale@x writes: > > > > > > Just for clarification. Your daughter should only be given the > > > diagnosis of Selective IgA Defiency if her IgA is 0 (not low, > but > > > entirely missing). > > > > > > > > > > > > I didn't know it was Selective if it was totally missing. Britt > is > > > Selective. Hmm. I guess we learn something everday. > > > > > > Janet, mom to Brittany, CVID, age 13 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 How does someone eliminate gluten from a child's diet? To eliminate gluten you have to cut out all grains with the exception of rice and corn, so that's no wheat, barley ,oats. I think there is one more. So you have to read all labels, gluten is in many things. Does your child have a gluten allergy?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 from Dale, Mom to Katy, CVID, age 20 I stand corrected. I got out my Patient and read that " Selective IgA Deficiency is the severe deficiency or total absence of the IgA class of immunoglobulins. I was thinking that the " selective " part referred to 0 numbers -- but what is significant about the zero number is that it increases the possibility of building anti-IgA antibodies. My understanding was that you had either IgA Deficiency (meaning low IgA) or you had Selective IgA Deficiency (meaning 0). Sorry for my misunderstanding and any confusion it may have caused. And yes, there are lots of members on the list with IgA deficient kiddos. In His service, Dale Dayann wrote: >http://www.ohiohealth.com/healthreference/reference/CC36A0E3-FE25- >4DF4-AC3875A3F92B283D.htm?category=questions > >The above link from the Mayo Clinic says that you can be Selective >IgA deficient even if you do not have zero IgA. So although I >appreciate your help I think I'm going to go with the specialist >we're seeing and believe his diagnosis of Selective IgA for our child >even though her IgA level was not at zero. > >Are there any other parents here whose children were diagnosed with >Selective IgA Deficiency but did not have zero IgA? I'd like to hear >about the diagnostic process and what treatments helped your child. > >Thanks, >Dayann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 In a message dated 10/4/2004 5:11:58 PM Eastern Daylight Time, dayann_m@... writes: Are there any other parents here whose children were diagnosed with Selective IgA Deficiency but did not have zero IgA? I'd like to hear about the diagnostic process and what treatments helped your child. It would be the same treatment if they are low or if they have none. If IGA def. is their only problem then antibiotics is the only thing to do for them. Besides making sure they get proper rest, nutrition, clean sheets, avoid sick people, wash hands often, etc.. Now, if you find out more is going on with the immune system than their are options. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Dayann- was diagnosed with Selective IgA Deficiency at age 2. She has since been tested 3 times. I was told that there are only a few labs in the US that perform the testing, and they don't give an " exact " number (although I believe I've read on this site that some kids HAVE received an exact number?). Each time has been tested she received a number such as " under 7 " , and last time it was " under 4 " . That mean she has some, but not enough. We've read on the IDF site that there is a chance she can outgrow it around the age of 6. Her doctor, Dr. Kobrinksy at Emory Hospital, wants us to wait to test her again until she turns 5 next spring. We just hope for the best. They also perform a " secretory test " , but each doctor I've asked has told me that the blood testing is more accurate, and so they've never given her that test. There really isn't anything you can do but treat the symptoms. was on antibiotics for 14 weeks straight last winter. She couldn't fight the ear infections, and has a cold almost constantly. She also has asthma, so that complicates things a bit. We just narrowly missed getting tubes (I was afraid of an " operation " ), but she finally shook it on her last dose of antibiotics. Whether it helps or not, I make her wash her hands often, and we always use the antibiotic hand wash when we're out. I try to limit contact with sick kids (kind of hard sometimes), and during really bad times of sickness we stay away from places like Mcs, parks with lots of kids, Chuck E Cheese, etc. Her brother is home today with strep throat, and there isn't much I can do when she gets home. I'll try to get her to play outside or go to a friend's house, but we live together, so she'll probably get something. I also don't take her into the doctor's office unless I absolutely have to, because she always seems to pick something up there. I've asked to wait in a separate room at the doctor's office (even though they look at me funny when I ask, but tough!). Hope this helps. Feel free to e-mail me anytime ercokat@.... , Mom to , 4, IgA Deficient, Asthma, Chronic Ear/Sinus Infections and Connor, 6 (Strep Throat today!) Re: Re: Dayann In a message dated 10/4/2004 5:11:58 PM Eastern Daylight Time, dayann_m@... writes: Are there any other parents here whose children were diagnosed with Selective IgA Deficiency but did not have zero IgA? I'd like to hear about the diagnostic process and what treatments helped your child. It would be the same treatment if they are low or if they have none. If IGA def. is their only problem then antibiotics is the only thing to do for them. Besides making sure they get proper rest, nutrition, clean sheets, avoid sick people, wash hands often, etc.. Now, if you find out more is going on with the immune system than their are options. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Les was first noted to have Selective IgM deficiency before they did his antibody tests. The doctor said Selective meant that one part of his immune system seemed to be singled out to have the deficiency and that the deficiency was " limited " to just IgM. Later of course we found out that there was more involved. Kindof similar to how some of the " selective IgA " patients start out and then progress to more. Ursula Holleman mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org IDF Patient/Family Handbook http://www.primaryimmune.org/pubs/book_pats/book_pats.htm / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 No Dale I am not sure it was you who said that, I think it was someone else. IN any case I am not mad at anyone, there is nothing to apologize for. We're here to share our experience with each other and exchange information and support but I know that no one here is a doctor, so I don't expect you or anyone else here to know all the answers -- heck, I've seen that sometimes the doctors don't have the answers! If I see something I am not sure about I will look it up and if I find different information or more detailed information I'll share it with the group. We're all learning. I don't expect perfection from anybody. It's ok to be wrong, and you didn't cause any major issues for me. I just looked it up and asked the doctor about it and everything was OK. Thanks so much for your help and support, it is needed and in the short time I've been here you have all helped me immensely. Perhaps doctors use two different terms when they talk among each other to show which kids have more severe cases of IgA and which kids have milder cases. Although I am completely new to this entire thing, I usually see and hear doctors using " IgA Deficiency " for those kids who make SOME but still very low amounts of IgA and " SELECTIVE IgA " for those who don't make ANY IgA, and perhaps that is where the confusion came from. You know, shop talk as opposed to textbook definitions? Happens all the time in every profession.... /Dayann > > >http://www.ohiohealth.com/healthreference/reference/CC36A0E3-FE25- > >4DF4-AC3875A3F92B283D.htm?category=questions > > > >The above link from the Mayo Clinic says that you can be Selective > >IgA deficient even if you do not have zero IgA. So although I > >appreciate your help I think I'm going to go with the specialist > >we're seeing and believe his diagnosis of Selective IgA for our child > >even though her IgA level was not at zero. > > > >Are there any other parents here whose children were diagnosed with > >Selective IgA Deficiency but did not have zero IgA? I'd like to hear > >about the diagnostic process and what treatments helped your child. > > > >Thanks, > >Dayann > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Thanks so much for getting back to me so soon. I am reading that some kids have an absence of IgA1 or IgA2 and that some kids with IgA Deficiency also lack or have low levels of IgG2, and that this might effect treatment. If anyone has encountered this please let me know. All the feedback I am getting is wonderful and very helpful, I can't thank all of you enough. /Dayann > > In a message dated 10/4/2004 5:11:58 PM Eastern Daylight Time, > dayann_m@h... writes: > > Are there any other parents here whose children were diagnosed with > Selective IgA Deficiency but did not have zero IgA? I'd like to hear > about the diagnostic process and what treatments helped your child. > > > > > > It would be the same treatment if they are low or if they have none. If IGA > def. is their only problem then antibiotics is the only thing to do for them. > Besides making sure they get proper rest, nutrition, clean sheets, avoid > sick people, wash hands often, etc.. > Now, if you find out more is going on with the immune system than their are > options. > > Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Thank you for your feedback. All of this helps. I hope your son feels better soon. Maybe you'll be lucky and your daughter won't catch the strep. So far I am doing ok I guess, when it comes to the hand washing and stuff. When I first saw that my daughter was getting so sick all the time, I became a regular Felix Unger. Antibacterial hand wash, antibacterial wet naps in my purse for constant hand and face wiping, we bring travel sized toilet paper and travel sized packets of paper toilet seat covers everywhere we go, so that she doesn't have any need to touch anything in a department store bathroom, lysol spray on counters, bleaching stuff, constantly throwing out spongues and using new ones for cleaning the house, vacuuming all the time, spotless clothes, being really nosey about who in school is sick and who in school is not sick, wiping toys down with Formula 409, people thought I was a woman obsessed, and I was. But I was on the right track! ha ha. As much as this is a serious illness I honestly can see the humor in me spraying after everyone in the house, and them thinking I had gone off the deep end. We have a really large living space and I am 3 months pregnant and very fatigued but if I have to scrub everything down like before I will do it, anything for my daughter and it is a small thing to have to do, to try to keep her from getting sick. The one thing you can't help is keeping her away from other kids. Sometimes you and the parents just don't know the other child is sick and then there are rude parents who let their sick kids go to school and cough and drool all over everyone, and for them there is very little you can do, all you can do is continue to monitor your child and try to get an antibiotic out of the pediatrician the minute he or she gets sick. Which is hard but not impossible. With my daughter it is constant sinus infections that don't go away and eventually get into her lungs and cause pneumonia or bronchitis, although she DOES seem to get ear infections more frequently than another kid would (is 4 times in one winter excessive?). I find that Zithromax works really well for her, Omnicef will clear up the initial infection but after the 10 day course of treatment she is sick again with the same thing in 24 hours so perhaps she would need to take the Omnicef for a longer span of time than the usual 10 days. Amoxicilin does NOTHING for her. The little bacteria must laugh at us when we try to kill them with that (I can just imagine them going, ha ha is that all you have for us! We're not going anywhere, we like it in this nose! Yum, bubble gum!). Augmentin also has no effect and it has a horrible aftertaste, so it is like the WWE match getting my daughter to take something that has no effect whatsoever and if that isn't frustrating for both of us, I don't know what is. What antibiotics are you finding helpful? I am going to make a little list because at this point we and the specialist are certain it is IgA. He is checking for additional allergies (IgE) and wants to see what is going on with her IgG2 and IgG4, I think to rule out the CVID but also to try to figure out which bacterial infections she may be particularly susceptible to so we can kind of try to anticipate the infections she'll get when she gets sick ahead of time. We are going to do the antibiotic thing but it helps to know the different kinds that are out there and if say " 9 out of the 10 IgA moms agree " that a certain antibiotic seems to serve their children well, I am going to ask that we try it. Every child is different but there is something to be said for the common experiences of parents. Thanks again for all the constructive feedback. /Dayann > Hi Dayann- > > was diagnosed with Selective IgA Deficiency at age 2. She has since been tested 3 times. I was told that there are only a few labs in the US that perform the testing, and they don't give an " exact " number (although I believe I've read on this site that some kids HAVE received an exact number?). Each time has been tested she received a number such as " under 7 " , and last time it was " under 4 " . That mean she has some, but not enough. We've read on the IDF site that there is a chance she can outgrow it around the age of 6. Her doctor, Dr. Kobrinksy at Emory Hospital, wants us to wait to test her again until she turns 5 next spring. We just hope for the best. > > They also perform a " secretory test " , but each doctor I've asked has told me that the blood testing is more accurate, and so they've never given her that test. > > There really isn't anything you can do but treat the symptoms. was on antibiotics for 14 weeks straight last winter. She couldn't fight the ear infections, and has a cold almost constantly. She also has asthma, so that complicates things a bit. We just narrowly missed getting tubes (I was afraid of an " operation " ), but she finally shook it on her last dose of antibiotics. > > Whether it helps or not, I make her wash her hands often, and we always use the antibiotic hand wash when we're out. I try to limit contact with sick kids (kind of hard sometimes), and during really bad times of sickness we stay away from places like Mcs, parks with lots of kids, Chuck E Cheese, etc. Her brother is home today with strep throat, and there isn't much I can do when she gets home. I'll try to get her to play outside or go to a friend's house, but we live together, so she'll probably get something. I also don't take her into the doctor's office unless I absolutely have to, because she always seems to pick something up there. I've asked to wait in a separate room at the doctor's office (even though they look at me funny when I ask, but tough!). > > Hope this helps. Feel free to e-mail me anytime ercokat@b... > > , Mom to , 4, IgA Deficient, Asthma, Chronic Ear/Sinus Infections and Connor, 6 (Strep Throat today!) > > Re: Re: Dayann > > > > In a message dated 10/4/2004 5:11:58 PM Eastern Daylight Time, > dayann_m@h... writes: > > Are there any other parents here whose children were diagnosed with > Selective IgA Deficiency but did not have zero IgA? I'd like to hear > about the diagnostic process and what treatments helped your child. > > > > > > It would be the same treatment if they are low or if they have none. If IGA > def. is their only problem then antibiotics is the only thing to do for them. > Besides making sure they get proper rest, nutrition, clean sheets, avoid > sick people, wash hands often, etc.. > Now, if you find out more is going on with the immune system than their are > options. > > Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Dayann, According to our ENT doctor and the academy she is associated with,3 ear infections in six months meets criteria for PE tubes. meets this criteria, however his have cleared with one round of antibiotics, so at this point, we are holding off. My older daughter got her third set of tubes last sept. The second set was the one that made the most difference for her, but she wasn’t four yet and still having some trouble. They actually went in to remove the wax buildup in her ears and ended up replacing the tubes because of granulation tissue around them. It was like she was “allergic” to the tubes. Last month we went in for our f/u appt (our ent dr. sees her every 6 months) and it has been a year since the last tubes. The left one is out and she has a hole in her eardrum from it. If it doesn’t close, we’ll have to go to the OR and have a patch placed. The r one is still in. She is on meds right now for a sinus infection and at this point that hole hasn’t closed. I’m giving it another 6 weeks, then we’ll go back to the ENT. I want to have a patch placed before the end of the year since we have met our family out of pocket expenses. I’d like to have a little easier time next year. Hope this helps you. We are also new to this group and I, too, have learned so much. I’m so anxious in the morning to log on and see how everyone has fared. I am home during the week and work weekends so that doesn’t have to go to daycare very much. It is a “busy” difficult schedule at times, but it is what we need to do right now. Take care. , 2 years, cyclic neutropenia, severe secretory IgA deficiency, IgG deficient with subclass 3 deficiency, low C4, low T cells, and iron deficiency anemia (resolved) igh 4 ¾, mild cerebral palsy (birth trauma), chronic sinus and ear infections, immunoglobins levels okay. Libby 10-healthy, but a high maintenance worry wart Kaitlyn 13-mild asthma…..8th grader, 13 going on 20 sometimes smarter than mom……..you all know what I mean. Warren, hubby of 6 years, insulin dependant diabetic on an insulin pump. Overall busy family---into sports and things. Both of the older girls play basketball, Libby and igh dance and I play TAXI SERVICE. Re: Dayann Thank you for your feedback. All of this helps. I hope your son feels better soon. Maybe you'll be lucky and your daughter won't catch the strep. So far I am doing ok I guess, when it comes to the hand washing and stuff. When I first saw that my daughter was getting so sick all the time, I became a regular Felix Unger. Antibacterial hand wash, antibacterial wet naps in my purse for constant hand and face wiping, we bring travel sized toilet paper and travel sized packets of paper toilet seat covers everywhere we go, so that she doesn't have any need to touch anything in a department store bathroom, lysol spray on counters, bleaching stuff, constantly throwing out spongues and using new ones for cleaning the house, vacuuming all the time, spotless clothes, being really nosey about who in school is sick and who in school is not sick, wiping toys down with Formula 409, people thought I was a woman obsessed, and I was. But I was on the right track! ha ha. As much as this is a serious illness I honestly can see the humor in me spraying after everyone in the house, and them thinking I had gone off the deep end. We have a really large living space and I am 3 months pregnant and very fatigued but if I have to scrub everything down like before I will do it, anything for my daughter and it is a small thing to have to do, to try to keep her from getting sick. The one thing you can't help is keeping her away from other kids. Sometimes you and the parents just don't know the other child is sick and then there are rude parents who let their sick kids go to school and cough and drool all over everyone, and for them there is very little you can do, all you can do is continue to monitor your child and try to get an antibiotic out of the pediatrician the minute he or she gets sick. Which is hard but not impossible. With my daughter it is constant sinus infections that don't go away and eventually get into her lungs and cause pneumonia or bronchitis, although she DOES seem to get ear infections more frequently than another kid would (is 4 times in one winter excessive?). I find that Zithromax works really well for her, Omnicef will clear up the initial infection but after the 10 day course of treatment she is sick again with the same thing in 24 hours so perhaps she would need to take the Omnicef for a longer span of time than the usual 10 days. Amoxicilin does NOTHING for her. The little bacteria must laugh at us when we try to kill them with that (I can just imagine them going, ha ha is that all you have for us! We're not going anywhere, we like it in this nose! Yum, bubble gum!). Augmentin also has no effect and it has a horrible aftertaste, so it is like the WWE match getting my daughter to take something that has no effect whatsoever and if that isn't frustrating for both of us, I don't know what is. What antibiotics are you finding helpful? I am going to make a little list because at this point we and the specialist are certain it is IgA. He is checking for additional allergies (IgE) and wants to see what is going on with her IgG2 and IgG4, I think to rule out the CVID but also to try to figure out which bacterial infections she may be particularly susceptible to so we can kind of try to anticipate the infections she'll get when she gets sick ahead of time. We are going to do the antibiotic thing but it helps to know the different kinds that are out there and if say " 9 out of the 10 IgA moms agree " that a certain antibiotic seems to serve their children well, I am going to ask that we try it. Every child is different but there is something to be said for the common experiences of parents. Thanks again for all the constructive feedback. /Dayann > Hi Dayann- > > was diagnosed with Selective IgA Deficiency at age 2. She has since been tested 3 times. I was told that there are only a few labs in the US that perform the testing, and they don't give an " exact " number (although I believe I've read on this site that some kids HAVE received an exact number?). Each time has been tested she received a number such as " under 7 " , and last time it was " under 4 " . That mean she has some, but not enough. We've read on the IDF site that there is a chance she can outgrow it around the age of 6. Her doctor, Dr. Kobrinksy at Emory Hospital, wants us to wait to test her again until she turns 5 next spring. We just hope for the best. > > They also perform a " secretory test " , but each doctor I've asked has told me that the blood testing is more accurate, and so they've never given her that test. > > There really isn't anything you can do but treat the symptoms. was on antibiotics for 14 weeks straight last winter. She couldn't fight the ear infections, and has a cold almost constantly. She also has asthma, so that complicates things a bit. We just narrowly missed getting tubes (I was afraid of an " operation " ), but she finally shook it on her last dose of antibiotics. > > Whether it helps or not, I make her wash her hands often, and we always use the antibiotic hand wash when we're out. I try to limit contact with sick kids (kind of hard sometimes), and during really bad times of sickness we stay away from places like Mcs, parks with lots of kids, Chuck E Cheese, etc. Her brother is home today with strep throat, and there isn't much I can do when she gets home. I'll try to get her to play outside or go to a friend's house, but we live together, so she'll probably get something. I also don't take her into the doctor's office unless I absolutely have to, because she always seems to pick something up there. I've asked to wait in a separate room at the doctor's office (even though they look at me funny when I ask, but tough!). > > Hope this helps. Feel free to e-mail me anytime ercokat@b... > > , Mom to , 4, IgA Deficient, Asthma, Chronic Ear/Sinus Infections and Connor, 6 (Strep Throat today!) > > Re: Re: Dayann > > > > In a message dated 10/4/2004 5:11:58 PM Eastern Daylight Time, > dayann_m@h... writes: > > Are there any other parents here whose children were diagnosed with > Selective IgA Deficiency but did not have zero IgA? I'd like to hear > about the diagnostic process and what treatments helped your child. > > > > > > It would be the same treatment if they are low or if they have none. If IGA > def. is their only problem then antibiotics is the only thing to do for them. > Besides making sure they get proper rest, nutrition, clean sheets, avoid > sick people, wash hands often, etc.. > Now, if you find out more is going on with the immune system than their are > options. > > Janet, mom to Brittany, CVID, age 13 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Thanks . The sinus infections are more frequent, and more problematic, for my daughter than the ear infections. Usually the antibiotic (no matter which one it is) will knock out the ear infection completely but wont' clear up entirely the residual infections that she gets from the drip in her nose and down into her bronchial tubes. In fact, the ear infections are usually the result of the sinus infections. So our concern is more about dealing with the nose and sinus issues. No one has ever suggested tubes for my daughter. Our pediatrician HAS, however, recommended that we see an ENT. She wants to see what is going on with our child's adenoids. We are waiting to see the blood test results with the IgG subclass analysis first. The reason is because apparently certain subclasses of IgG black certain specific bacterial infections. If we can somehow figure out which bacterial infections or which bacteria my child is most susceptible to that will help us -- we'll have more detailed information (perhaps written detailed information) to give the ENT when we see him. We're thinking the more detailed information we can give that might help him know what to look for in her little nose, the better. I dont' like those darned ear tubes. But if its what she ends up needing then it is what she ends up needing. Thanks too for the information on how many ear infections you have to get in a year to warrant tubes. This is my first child so I don't know what a " normal " or " excessive " number of infections is, all I know is that something was wrong and at least now we are getting a tiny bit closer to fixing it, or at least making things a little more bearable and functional for our daughter. /Dayann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 I'm sorry this should have been addressed to . I will eventually figure out who's who on here, please keep being patient with me. Thanks, Dayann > > Thanks . The sinus infections are more frequent, and more > problematic, for my daughter than the ear infections. Usually the > antibiotic (no matter which one it is) will knock out the ear > infection completely but wont' clear up entirely the residual > infections that she gets from the drip in her nose and down into her > bronchial tubes. In fact, the ear infections are usually the result > of the sinus infections. So our concern is more about dealing with > the nose and sinus issues. > > No one has ever suggested tubes for my daughter. Our pediatrician > HAS, however, recommended that we see an ENT. She wants to see what > is going on with our child's adenoids. We are waiting to see the > blood test results with the IgG subclass analysis first. The reason > is because apparently certain subclasses of IgG black certain > specific bacterial infections. If we can somehow figure out which > bacterial infections or which bacteria my child is most susceptible > to that will help us -- we'll have more detailed information (perhaps > written detailed information) to give the ENT when we see him. We're > thinking the more detailed information we can give that might help > him know what to look for in her little nose, the better. > > I dont' like those darned ear tubes. But if its what she ends up > needing then it is what she ends up needing. > > Thanks too for the information on how many ear infections you have to > get in a year to warrant tubes. This is my first child so I don't > know what a " normal " or " excessive " number of infections is, all I > know is that something was wrong and at least now we are getting a > tiny bit closer to fixing it, or at least making things a little more > bearable and functional for our daughter. > > /Dayann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 from Dale, Mom to Katy, CVID, age 20 Dayann, there seems to be 2 distinct groups of IgA deficient people. One has symptoms and one does not. That's very confusing to researchers and there's work being done to try to determine what else is involved. One thing they have determined is that a very large percentage of the IgA deficient people who have symptoms also have an IgG subclass deficiency. If that deficiency is severe enough that it affects antibody production (as determined by checking titers to vaccinations), then the recommended treatment is replacement of IgG by IVIG or SCIG and the diagnosis changes to CVID. This will not help the low IgA problem, but will help the body by providing other people's antibodies to fight infections. Because so many people have low IgA and no symptoms, a lot of physicians do not consider the complications of living with IgA to be very serious. That is a fallacy because some people with low IgA have very severe complications from chronic infections of the sinuses, lungs, and gut. (IgA primarily protects the mucous membranes). The IgG can be replaced, the IgA cannot at this time. Hope that helps, In His service, Dale >I am reading that some kids have an absence of IgA1 or IgA2 and that >some kids with IgA Deficiency also lack or have low levels of IgG2, >and that this might effect treatment. If anyone has encountered this >please let me know. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 Dale, What vaccine titers matter??? did not convert his chicken pox, but appears to have converted his dpt. I just got his records and were reviewing the labs, and the stuff from Mayo about his dpt titers. it made no sense to me. , in addition to the secretory iga and serum iga deficiency have a igg sub class three def. We see Shapiro in two weeks, and I am so looking forward to having something definitive happen. HOpefully???!!!! Thank you so much for your knowledge and expertise. Quoting Dale Weatherford <dale@...>: > > > > > > from Dale, Mom to Katy, CVID, age 20 > > > > Dayann, there seems to be 2 distinct groups of IgA deficient people. > > One has symptoms and one does not. That's very confusing to > > researchers and there's work being done to try to determine what else is > > involved. One thing they have determined is that a very large > > percentage of the IgA deficient people who have symptoms also have an > > IgG subclass deficiency. If that deficiency is severe enough that it > > affects antibody production (as determined by checking titers to > > vaccinations), then the recommended treatment is replacement of IgG by > > IVIG or SCIG and the diagnosis changes to CVID. This will not help the > > low IgA problem, but will help the body by providing other people's > > antibodies to fight infections. Because so many people have low IgA > > and no symptoms, a lot of physicians do not consider the complications > > of living with IgA to be very serious. That is a fallacy because some > > people with low IgA have very severe complications from chronic > > infections of the sinuses, lungs, and gut. (IgA primarily protects the > > mucous membranes). The IgG can be replaced, the IgA cannot at this > > time. > > > > Hope that helps, > > In His service, > > Dale > > > > >I am reading that some kids have an absence of IgA1 or IgA2 and that > > >some kids with IgA Deficiency also lack or have low levels of IgG2, > > >and that this might effect treatment. If anyone has encountered this > > >please let me know. > > > > > > > > > > > > > > > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > > > To unsubscribe -unsubscribegroups (DOT) > > To search group archives go to: > /messages > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 from Dale, Mom to Katy, CVID, age 20 , there are several vaccines that they use to find out if they are making titers to all the various types. The pneumoccocal is an important one because it covers the streps and staphs that cause a lot of the stuff our kids deal with. But, Katy also didn't make a response to tetanus -- that tells them about another type of germs. But I don't know which ones are important for what. But, Katy was fine on most of her vaccine titers -- just not the tetanus or the pneumococcal vaccine. A lot of our kids do fine on everything except the pneumococcal. I'm sure the chicken pox lack of response will tell them something -- I'm just not sure what! I do know that if just one subclass of IgG is missing, the other subclasses will try to cover it. Then the clinical picture and the titers to vaccinations become critically important to determine how successfully the other subclasses are covering all the various germs our kids encounter. I agree with the " hopefully " part. It's hard to get our hopes up and then be told to wait for one more test -- or 6 more months, or one more infection. But, it's part of the process. Hopefully, you'll get some definitive action! In His service, Dale lmschatz@... wrote: >Dale, What vaccine titers matter??? did not convert his chicken pox, >but appears to have converted his dpt. I just got his records and were >reviewing the labs, and the stuff from Mayo about his dpt titers. it made no >sense to me. , in addition to the secretory iga and serum iga deficiency >have a igg sub class three def. We see Shapiro in two weeks, and I am so >looking forward to having something definitive happen. HOpefully???!!!! Thank >you so much for your knowledge and expertise. > > > Quote Link to comment Share on other sites More sharing options...
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