Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dear Donna, You had asked what IVIG was. IVIG is a blood product that is intravenous immunoglobulins. Small amounts IgA can get passed through but it is mostly IgG. It is used for a variety of reasons PIDS, HIV, Kawasaki Virus to name a few. The main reason is for replacement therapy of an immune deficient person. In my sons case he has no working b-cells (antibodies) so he is infused every 21 days with IVIG to give him antibodies to help him fight off infections. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dear Donna, You had asked what IVIG was. IVIG is a blood product that is intravenous immunoglobulins. Small amounts IgA can get passed through but it is mostly IgG. It is used for a variety of reasons PIDS, HIV, Kawasaki Virus to name a few. The main reason is for replacement therapy of an immune deficient person. In my sons case he has no working b-cells (antibodies) so he is infused every 21 days with IVIG to give him antibodies to help him fight off infections. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 dear donna, you mentioned your son makes no b cells, so does he have agammaglobulin amemia or something else? My son simon has agammaglobulin anemia and he seems like he is doing much better than some of the other children I wonder if agammaglobulin anemia is less severe than some of the other PIDs or are we just lucky,. Imput from anyone would be appreciated. Thanks Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 dear donna, you mentioned your son makes no b cells, so does he have agammaglobulin amemia or something else? My son simon has agammaglobulin anemia and he seems like he is doing much better than some of the other children I wonder if agammaglobulin anemia is less severe than some of the other PIDs or are we just lucky,. Imput from anyone would be appreciated. Thanks Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 sorry i adressed that last e-mail to Donna actually it was meant for the person who responded to Donnas e-mail about IVIG thanks Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 sorry i adressed that last e-mail to Donna actually it was meant for the person who responded to Donnas e-mail about IVIG thanks Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dear Janet, Aggammaglobulinemia is a significant immune deficiency. My son has a newly named immune deficiency called Cd5 PID. His physician, Dr. Hostoffer has been very busy this past year educating immunologist across the country about it. In the Cd5 PID you have no functioning b-cells, none (kind of like aggamma) but in addition you have an abundance of cells called Cd5+ that attack the body in the form of autoimmune diseases and malignancies. I recently asked his doctor if Mark had not had the added component of the Cd5+ cell would he be a Bruton's patient and he said yes. The IDF has a wonderful handbook for patients and families that describes most of the common PIDS. My sons was just discovered in December of 1997 so it is not even in any medical texts yet. There are only 7 boys in the world with the Cd5 PID. I am always looking on the Internet for anyone that sounds remotely similar. I am so happy to hear that your son is doing well! Autumn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 dear autum what symtoms did your son have that lead to that diagnosis? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dear Janet: Mark's symptoms were chronic and constant super infections of the respiratory tract, Sinus and lungs. He had frequent ear infections as well. He cultured all different types of bacteria's almost constantly. He was steroid dependent for a while as his lungs were in such poor shape. He had unexplained fevers anywhere from 103 to 106.5 with white blood counts ranging from 40,000 to 60,000. He commonly had up to 14 bowel movements a day. I should mention, that Mark does have Hereditary Fructose Malabsorption. He had chronic blood in the stools and had moderate anemia. He had frequent petechiae and oral thrush and high ESRs. He has had dozen and dozen of episodes of uvular edema...some life-threatening. He has GERD, Failure to Thrive, Asthma, allergies, bacteria overgrowth of the gut, and crohns disease. The crohns is secondary to his PID. The one thing that Dr.Hostoffer really thought was odd, was that Mark did not really improve that well on IVIG. He did not grow or gain weight the entire first year that he was on it. That is a very unusual finding. His infections improved but the GI problems persisted as did the other unusual findings. The big clue was the -0- response to the pneummovax. Dr.Hostoffer is a wonderful man and recently told me that it was not a stroke of genius that helped him discover this PID, it was a stroke of luck. I will always be thankful to this dear man for finding this defect and I feel confident and hopeful that he will be the one to find the cure!! Gail~I am so sorry to hear that your mother had such an awful experience with her infusion. I agree with you...we really need to speak very up to these physicians who really do not understand PID's. I hope she will be feeling better soon!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, I am sorry to hear you had a bad time with the docs. I think we have all been there at one time or another but that doesn't make it any easier to deal with. What part of indiana do you live in? I am in southern Ohio. It is so hard to find caring and understanding docs for our children. My prayers are with you both! Donna & Walt-IGA def-asthma-8wks premie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, These doctors work for YOU. Don't forget that. It was the most valuable information I was ever given. I have fired 1 doctor and plenty nurses over the last 2+ years. You don't have to take their abuse. Ginger Mom of Adam, age 3, IgA and IgG deficiency, Molluscum, Chronic RAD, Chronic Sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Donna, How close are you to Cleveland Ohio? I live in Michigan but travel to Ohio for medical care. Dr. Hostoffer is an excellent physician out of Rainbow Babies and Children's Hospital of Cleveland. He is an immunologist and involved with the IDF. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi Gail, It's Michele. I live in Southern Indiana. I would appreciate if you could help me find a doctor specializing in immune def. The doctor's that are prescribing 's IVIG are pediatric Infectious disease specialist. I have also had bad experiences with doctors. I have been told I am a bad mother because I was concerned about loosing my job due to so many missed days. I was screamed at by a lung specialist for seeing another doctor. It took many frustrating years to finally have a diagnosis and treatment. Is this common among immune def. children? I am a single mother who has been stressed to the max many times with concern for my daughter and my job. I appreciate this group for the support I already feel. I know that I am not alone. Once again Thank you all Michele (mother of -CVID 8 years old) Re: Digest Number 14 From: G6517@... Donna, Where are you living? You really need to have him retested by an board certified immunologist. The list of illnesses you shared certainly warrant them revisiting the immune system. I will be glad to help you find immunologist in your area. I am a volunteer with the Immune Deficiency Foundation. If you are not familiar with us - we are a non-profit organization that promotes research, education and provides patient support for families with Primary Immune Deficiencies. He might benefit from the use of IViG, but you must have him reevaluated. You should go to that appointment prepared too! Have a history of his illnesses by date with medications used. Just type something up from your memory as best as you can. This puts in simple black and white. It helps them see the quality of life you and your child are having. This often helps them make a decision in their treatment options. I will be glad to talk with you more in detail. You can email me or call me . Take Care Gail Gmoore6517@... Kinsey's mom -6 1/2 year old with CVID ------------------------------------------------------------------------ New hobbies? New curiosities? New enthusiasms? http://www.onelist.com Sign up for a new email list today ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Ginger, I'm glad to know other people experience the same things I have. It's so hard to definite answers from anyone. It seems the doctors are afraid to make diagnosis. I have alot of questions that know one will answer. I would like to know if this is life-long? How does this disease progress ? Will she get worse? Michele (moher of -CVID) Re: Digest Number 14 From: MATHERS313@... Michele, These doctors work for YOU. Don't forget that. It was the most valuable information I was ever given. I have fired 1 doctor and plenty nurses over the last 2+ years. You don't have to take their abuse. Ginger Mom of Adam, age 3, IgA and IgG deficiency, Molluscum, Chronic RAD, Chronic Sinusitis ------------------------------------------------------------------------ If you like orange and blue, then you will love our new web site! http://www.onelist.com Onelist: ing connections and information exchange ------------------------------------------------------------------------ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 > > It's Michele. I live in Southern Indiana. I would > appreciate if you > could help me find a doctor specializing in immune def. > The doctor's > that are prescribing 's IVIG are pediatric Infectious disease > specialist. > , How far are you from Vanderbilt? I know of someone else in Indiana who goes there because the pediatric immunologist is supposed to be quite good. She used to use Riley, but the immunologist she was dealing with there has left. If Vanderbilt is an option for you I'll get the doctor's name for you. Let me know. Barb, mum to Ray, 5yr old, SCID, TPN user, Central Line, Mic-Key button, post BMT ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Barb Ballard >^..^ scidmail@... ICQ#1244747 The SCID Homepage http://www.scid.net The Primary Immune Deficiency Webring http://members.xoom.com/pidring/ http://www2.cybercities.com/p/pidring/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 For those of you who are interested Dr. Hostoffer's phone number is 216/844-3237. He is at Rainbow Babies and Children's Hospital of Cleveland, Department of Immunology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, I just left a good job in Sept of this year after many, many frustrating experiences. I am currently without a job for the first time in the last 15 years. It is the strangest experience I have had to deal with.....I decided that it was or had to be the kids over the job....I had a very understanding boss....But I knew it was time to come home and try and make things as comfortable for the kids as I could. This has been our worst winter yet. Jake is 9 and is 6. I made the right choice.....I am so glad that my husband has been as supportive as he has. My Mom has also come to help us recently....It has been one battle after another here recently... has had 4 surgeries in the last 8 weeks and Jake is suffering from EBV and any viral thing that the wind blows at us I think. I know several have shared stories about misbehavior, but are any other kids suffering from depression and chronic anxiety? , my 9 year old is having a terrible time with this lately. They actually put him on an antidepressant. They decided today that he does not have the flu, but a reaction from the BuSpar that he takes. I guess they can get Anorexia from it. He has not eaten a meal in 2 days. He has been sick since Sunday. We are going to take him off of the med for the weekend and see if this will help his appetite any.....Then put him back on the drug Sunday night if his appetite returns......Anybody else have any of these kinds of problems as well????? Kim....I really feel for you....It must be awful being a single parent and going through this...Do you have any help or support from anyone else???? I hope and pray that you do........Hang in there....At least there is always tomorrow to look forward toooo Mach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, I just left a good job in Sept of this year after many, many frustrating experiences. I am currently without a job for the first time in the last 15 years. It is the strangest experience I have had to deal with.....I decided that it was or had to be the kids over the job....I had a very understanding boss....But I knew it was time to come home and try and make things as comfortable for the kids as I could. This has been our worst winter yet. Jake is 9 and is 6. I made the right choice.....I am so glad that my husband has been as supportive as he has. My Mom has also come to help us recently....It has been one battle after another here recently... has had 4 surgeries in the last 8 weeks and Jake is suffering from EBV and any viral thing that the wind blows at us I think. I know several have shared stories about misbehavior, but are any other kids suffering from depression and chronic anxiety? , my 9 year old is having a terrible time with this lately. They actually put him on an antidepressant. They decided today that he does not have the flu, but a reaction from the BuSpar that he takes. I guess they can get Anorexia from it. He has not eaten a meal in 2 days. He has been sick since Sunday. We are going to take him off of the med for the weekend and see if this will help his appetite any.....Then put him back on the drug Sunday night if his appetite returns......Anybody else have any of these kinds of problems as well????? Kim....I really feel for you....It must be awful being a single parent and going through this...Do you have any help or support from anyone else???? I hope and pray that you do........Hang in there....At least there is always tomorrow to look forward toooo Mach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 , I live in Iowa, but I know of a wonderful Pediatric Immunologist at Loyola in Chicago. Would you be willing to travel to Chicago.....There is also a good one in St. Louis.....Let me know....Best of luck... Sue Warner Mom of Jake and Chris....Hypogammaglobulinemia. We also have a 14 year old that is well....I thank the lord daily for that..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, Adam's doctor told us that there was no way to determine what the future holds. He said that they are making new discoverys in genetics every day and who knows what will be discovered in the next 20 years. Our big question was " Should he ever have children? " Ginger Mom of Adam, age 3, IgA and IgG deficiency, Molluscum, Chronic RAD, Chronic Sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Michele, Adam's doctor told us that there was no way to determine what the future holds. He said that they are making new discoverys in genetics every day and who knows what will be discovered in the next 20 years. Our big question was " Should he ever have children? " Ginger Mom of Adam, age 3, IgA and IgG deficiency, Molluscum, Chronic RAD, Chronic Sinusitis Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.