Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 I have two boys with Shwachman-Diamond Syndrome and part of SDS is failure to thrive (until they start enzymes) you can meet my family at: www.shwachman.50megs.com <http://www.shwachman.50megs.com/> I agree with April R-the weight issues do sound like SDS and SDS kids have recurrent infections like CVID kids, but they usually stem from neutropenia and neutrophil chemotaxis issues. My boys also have had low IgG and IgM...my oldest SDSer seems to have resolved with the IgG issues for now-at least what we checked. My youngest is still on SCIG---- he's the one who has been hospitalized more often with infections (cellulitis, etc) --he is doing better though, this winter we only had one pneumonia. ~Peace be with you~ Pattie " Faith is to believe what you do not see. The reward of that faith is to see what you believe. " Saint Augustine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thanks for the welcome from everyone.... We go back to the PED immunologist at UNC in 2weeks and they took 12vials of blood so I am assuming that they are checking lots of stuff. The first labs were done when he was in surgery for 2nd set of tubes. We are having a rough day/night... Lance has a high fever and he always becomes orally aversive when he is sick so it is going to be a battle to get the Keflex in him...His left lymph node is swollen again and red however it is not as bad as in Feb when he had surgery to clean out the staph.. My husband is not very supportive right now because he does not see past the current infection. The more I read the more this all makes sense and I am so mad for not knowing about this sooner. Lance has had everything odd compared to my oldest who only has asthma. Lance hardly eats to begin with and he is always saying he hurts in his bones and head and belly. I feel like a horrible parent for waiting this long to get pushy. So how long is the diagnostic process? Also what age do treatments start and wanted to share that Lance's IGg was 380 and wondering how that sounds to everyone? Forgive me for my newness April > > > > Hello everyone I am hoping to soak in as much info as possible from > > your group! My son just turned 4yrs old and he is the most sickly > > little fella! He catches everything and he has GI issues (weighing in > > at a whopping 30 lbs) chronic ear infections recurring staph in his > > lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg > levels > > are very low and he had labs to test the sub levels on Wed... So does > > this sound like any of your kiddos. If so please tell me as much as > > possible and what measures do you take to help your children with > their > > immunity? > > Thanks > > April > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Sounds like you should have some more answers soon. The immunologist should be able to give you some strong preliminary answers. They will probably do a vaccine for Pneumovax with before and after titers to see how he builds antibodies. They need to do all of the testing before they start Gammaglobulin. The antibody testing takes about 6 wks. Our initial one they only waited 3 wks but now I have seen most doctors are waiting the 6 to see if they hold onto the antibodies. My sons IgG was usually around 400 also not really low but not very protective either. There are a number of other tests. If you do not have info from IDF then make sure you call and order things in the AM so that you can get a very comprehensive information and get the big picture put together in your mind. It is very helpful to share with family and friends as well. Feel free to ask all the questions you need. This is a great group. I have been on here since my son was 3 and we were finally put on Gammaglobulin. He was sick from birth on. Initial diagnosis was at 16mo. but we did not treat except with massive antibiotics. He was ALWAYS sick except for 10 days in July. It was awful. His quality of life has Greatly improved. He gets Sub Q gammaglobulin by me here at home weekly. It has made all the difference in the world. BARBIE Re: My son Thanks for the welcome from everyone.... We go back to the PED immunologist at UNC in 2weeks and they took 12vials of blood so I am assuming that they are checking lots of stuff. The first labs were done when he was in surgery for 2nd set of tubes. We are having a rough day/night... Lance has a high fever and he always becomes orally aversive when he is sick so it is going to be a battle to get the Keflex in him...His left lymph node is swollen again and red however it is not as bad as in Feb when he had surgery to clean out the staph.. My husband is not very supportive right now because he does not see past the current infection. The more I read the more this all makes sense and I am so mad for not knowing about this sooner. Lance has had everything odd compared to my oldest who only has asthma. Lance hardly eats to begin with and he is always saying he hurts in his bones and head and belly. I feel like a horrible parent for waiting this long to get pushy. So how long is the diagnostic process? Also what age do treatments start and wanted to share that Lance's IGg was 380 and wondering how that sounds to everyone? Forgive me for my newness April > > > > Hello everyone I am hoping to soak in as much info as possible from > > your group! My son just turned 4yrs old and he is the most sickly > > little fella! He catches everything and he has GI issues (weighing in > > at a whopping 30 lbs) chronic ear infections recurring staph in his > > lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg > levels > > are very low and he had labs to test the sub levels on Wed... So does > > this sound like any of your kiddos. If so please tell me as much as > > possible and what measures do you take to help your children with > their > > immunity? > > Thanks > > April > > > ________________________________________________________________________________\ ____ 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 4, 2008 Report Share Posted May 4, 2008 Oh yeah my son is 12 now so we have been doing this for a little while. BARBIE Re: My son Thanks for the welcome from everyone.... We go back to the PED immunologist at UNC in 2weeks and they took 12vials of blood so I am assuming that they are checking lots of stuff. The first labs were done when he was in surgery for 2nd set of tubes. We are having a rough day/night... Lance has a high fever and he always becomes orally aversive when he is sick so it is going to be a battle to get the Keflex in him...His left lymph node is swollen again and red however it is not as bad as in Feb when he had surgery to clean out the staph.. My husband is not very supportive right now because he does not see past the current infection. The more I read the more this all makes sense and I am so mad for not knowing about this sooner. Lance has had everything odd compared to my oldest who only has asthma. Lance hardly eats to begin with and he is always saying he hurts in his bones and head and belly. I feel like a horrible parent for waiting this long to get pushy. So how long is the diagnostic process? Also what age do treatments start and wanted to share that Lance's IGg was 380 and wondering how that sounds to everyone? Forgive me for my newness April > > > > Hello everyone I am hoping to soak in as much info as possible from > > your group! My son just turned 4yrs old and he is the most sickly > > little fella! He catches everything and he has GI issues (weighing in > > at a whopping 30 lbs) chronic ear infections recurring staph in his > > lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg > levels > > are very low and he had labs to test the sub levels on Wed... So does > > this sound like any of your kiddos. If so please tell me as much as > > possible and what measures do you take to help your children with > their > > immunity? > > Thanks > > April > > > ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Oh yeah my son is 12 now so we have been doing this for a little while. BARBIE Re: My son Thanks for the welcome from everyone.... We go back to the PED immunologist at UNC in 2weeks and they took 12vials of blood so I am assuming that they are checking lots of stuff. The first labs were done when he was in surgery for 2nd set of tubes. We are having a rough day/night... Lance has a high fever and he always becomes orally aversive when he is sick so it is going to be a battle to get the Keflex in him...His left lymph node is swollen again and red however it is not as bad as in Feb when he had surgery to clean out the staph.. My husband is not very supportive right now because he does not see past the current infection. The more I read the more this all makes sense and I am so mad for not knowing about this sooner. Lance has had everything odd compared to my oldest who only has asthma. Lance hardly eats to begin with and he is always saying he hurts in his bones and head and belly. I feel like a horrible parent for waiting this long to get pushy. So how long is the diagnostic process? Also what age do treatments start and wanted to share that Lance's IGg was 380 and wondering how that sounds to everyone? Forgive me for my newness April > > > > Hello everyone I am hoping to soak in as much info as possible from > > your group! My son just turned 4yrs old and he is the most sickly > > little fella! He catches everything and he has GI issues (weighing in > > at a whopping 30 lbs) chronic ear infections recurring staph in his > > lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg > levels > > are very low and he had labs to test the sub levels on Wed... So does > > this sound like any of your kiddos. If so please tell me as much as > > possible and what measures do you take to help your children with > their > > immunity? > > Thanks > > April > > > ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 April, first of all, don't feel like a bad parent. Remember, PID is a RARE disease, how would you think of it? Who do you know who has ever heard of it? Don't beat yourself up. Your ped saw the red flags, and be glad that you're on the right track now. The diagnostic process can take a while, because they have to test vaccine titers. They check to see how he responded to DTAP, HIB, etc. If he didn't make a vaccine response to his shots, and his counts are low, then they will likely start him on IVIG. They also might want to check and make sure he's not losing cells somewhere else, like excreting it in his urine or BM. The treatment for PID is IVIG. They will start that as soon as the diagnosis is confirmed. They start it any age, Mark went on at 3 months. The large amount of blood drawn sounds like they are doing very thorough testing, probably his entire B & T cell studies, which tell them if they are low in number, how they work, etc. I'm guessing they drew titers then, too. 380 is low for IGG. Normal is usually over 600, they don't like it to dip below 500. IVIG boosts IGG levels, and they try to do the dose so it stays about 600. If he goes on IVIG, they will check his dose every few months to make sure his levels stay up. Once he's on IVIG, he will do much better as far as infections go. It can take a couple infusions before you really see an improvement in infection rate. The first couple doses he may feel tired, achy, etc since the antibodies are going to go in there and attack his infections he has going on now. As for your husband, it's tough. My experience is that men have a " fix it " type of thinking, and PID is not a fix-it disease. It's something that you have to learn to cope with since it's not going to go away. He, and you, will need time to deal with it. We have been working on dealing with Mark's disease for 6 years, and we still don't have it down. Sometimes are good, sometimes hard. You're in the initial stage, it's incredibly stressful. Don't be too hard on yourself, or him. This is your precious child, and you would do anything to protect him from this. Again, I would strongly urge you to contact IDF for information on PID and the books they have for children. www.primaryimmune.org. You can order them right from the website. They have a great amount of resources. Intermittent bone, belly pain is pretty common. Make a list of all your questions for your immuno and take it with you. Again, please don't stress yourself out by figuring out his entire future before you meet with immuno and see what they are thinking. Keep us posted. , mom to Mark, 6, CVID > > > > > > Hello everyone I am hoping to soak in as much info as possible > from > > > your group! My son just turned 4yrs old and he is the most > sickly > > > little fella! He catches everything and he has GI issues > (weighing in > > > at a whopping 30 lbs) chronic ear infections recurring staph in > his > > > lymph node and teeny tonsils(as the Dr pointed out Wed) His IGg > > levels > > > are very low and he had labs to test the sub levels on Wed... So > does > > > this sound like any of your kiddos. If so please tell me as much > as > > > possible and what measures do you take to help your children with > > their > > > immunity? > > > Thanks > > > April > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2011 Report Share Posted April 29, 2011 Hi, My son was bullied out of high school he is 17 years old. He has always tested off the charts with the schools IQ testing. Since he was a young boy I have always had problems with violent outbursts. In grade school he was put into a class for emotionally disturbed children. A teacher in that class asked me to get him tested for Aspergers. I only took him to see counselors who all said he did not have it. Earlier this week he came to me and said he wanted to go to the hospital because he was so depressed about school that he felt he may hurt himself. I took him and he was admitted into the psych ward. After a physician met with him and did some testing for about three hours, he called me and asked if I had ever heard of Aspergers Syndrome, I just broke down and cried out of relief. My son is now diagnosed with this. I would like to receive any information that would help me help him. The hospital will be referring us to a person who specializes in this. I just feel horrible for all the torment that my son has been through not only from his peers but from us expecting things from him that he could not do. For 17 years my son has felt alone and that no one cared for him. Any information would be helpful. Thanks, Braasch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2011 Report Share Posted April 30, 2011 It'll all be okay , Don't blame yourself as people don't know what they don't know until you make the right connections. It can be very frustrating and heartbreaking. All will be well as you're on the right track now. Blessings, RhodaFrom: Braasch <izzme1967@...>Autism and Aspergers Treatment Sent: Friday, April 29, 2011 9:39 AMSubject: Re: My son Hi, My son was bullied out of high school he is 17 years old. He has always tested off the charts with the schools IQ testing. Since he was a young boy I have always had problems with violent outbursts. In grade school he was put into a class for emotionally disturbed children. A teacher in that class asked me to get him tested for Aspergers. I only took him to see counselors who all said he did not have it. Earlier this week he came to me and said he wanted to go to the hospital because he was so depressed about school that he felt he may hurt himself. I took him and he was admitted into the psych ward. After a physician met with him and did some testing for about three hours, he called me and asked if I had ever heard of Aspergers Syndrome, I just broke down and cried out of relief. My son is now diagnosed with this. I would like to receive any information that would help me help him. The hospital will be referring us to a person who specializes in this. I just feel horrible for all the torment that my son has been through not only from his peers but from us expecting things from him that he could not do. For 17 years my son has felt alone and that no one cared for him. Any information would be helpful. Thanks, Braasch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2012 Report Share Posted February 23, 2012 I am so sorry for your incredible loss! Take care of yourselves. On Feb 23, 2012 4:08 PM, " stoogepigeon " <lilibet4@...> wrote: ** only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2012 Report Share Posted February 23, 2012 I am so sorry for your incredible loss! Take care of yourselves. On Feb 23, 2012 4:08 PM, " stoogepigeon " <lilibet4@...> wrote: ** only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2012 Report Share Posted February 23, 2012 I am distraught for you at the loss of your precious son. Please know your family will be in our prayers. Dayna Fladhammer Mom. To Charlie, 11, Kate, 9, Tommy,8, and Grace 5 months. Older 3 with CVID. Sent from my iPhone On Feb 23, 2012, at 4:08 PM, " stoogepigeon " <lilibet4@...> wrote: > only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2012 Report Share Posted February 23, 2012 I am distraught for you at the loss of your precious son. Please know your family will be in our prayers. Dayna Fladhammer Mom. To Charlie, 11, Kate, 9, Tommy,8, and Grace 5 months. Older 3 with CVID. Sent from my iPhone On Feb 23, 2012, at 4:08 PM, " stoogepigeon " <lilibet4@...> wrote: > only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 I am so sorry for your loss. My family and I are praying for your family. I wish we could do more to help you through this difficult time. May God watch over you all and help you find strength and peace. A Mom to Madi (7), (5 with hypogamma + many other medical issues), Gabby 4 and Gus (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 I am so sorry for your loss. My family and I are praying for your family. I wish we could do more to help you through this difficult time. May God watch over you all and help you find strength and peace. A Mom to Madi (7), (5 with hypogamma + many other medical issues), Gabby 4 and Gus (2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 So very sorry for your loss. My thoughts and prayers are with you and your family. ~Faith Faith L. Pack Mom to Laurel (6) CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 So very sorry for your loss. My thoughts and prayers are with you and your family. ~Faith Faith L. Pack Mom to Laurel (6) CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 So sorry for your loss. Prayers going out to you and your family. Kim, (15, CVID) my son only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. ------------------------------------------------------------------------------ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1424 / Virus Database: 2113/4827 - Release Date: 02/23/12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 So sorry for your loss. Prayers going out to you and your family. Kim, (15, CVID) my son only 10 years old, who was neutropenic and cvid, died 3 weeks ago from an overwhelming infection. One day he was fine, taking a secondary school exam, the next day he was on life support. Bad things can happen quickly. We are devastated. ------------------------------------------------------------------------------ No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1424 / Virus Database: 2113/4827 - Release Date: 02/23/12 Quote Link to comment Share on other sites More sharing options...
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