Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Welcome Betsy *S* I am mom to Ern 4. She was diagnosised with servre congential neutropenia at 12 months. She started on neupogen in May. We recently found out that also has hypogammaglobulinemia. The grouhas valuable info. you will enjoy this group. === and (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) mom to Evan 6, 4 and Abby Rose 2 _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 Hi Nuno, I'm Becky and my son is almost two. He has CVID and asthma. Congrats on the pregnancy!It sounds like a long road you've all been on to get Madalena's diagnosis. This group is wonderful, I am pretty new here. Everyone is very helpful and you will learn alot here! Take care, Becky (mom to Ben, 22 mo. CVID, asthma) PedPID email list > >> > >> > >> You recently requested to subscribe to the Pediatric Primary Immune > >>Deficiency email list. A brief bio about yourself and your reason for > >>interest in the group is requested. I will then add your name to the > >>permanent mailing list. > >> > >> Thank you for your interest. > >> > >> PedPID Moderator > >> > >> > >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Betsy and Mika, Welcome to the group! I kind of pop in and out, based on time restraints and the fact that I'm not exactly in the demographics of who the group was designed for. I'm 25, have had CVID many years now, and a little over a year ago started having seizures from viral encephalitis (among other things... it's been a complicated course, but I thought I'd include that for Betsy's benefit). I did graduate from high school, college, etc, but it's been a long and crazy road! If I can be of any help, please let me know. I've said it to many parents before - I can only imagine what it's like to be the parent of a chronically ill child/teen, and if I can help at all by providing a bit of the " patient " point of view, I'd gladly do so... And Mika, I don't know if you've seen, but the IPOPI board has a Teens/Young Adults section. Sounds like you know a lot of the resources already, but since I hadn't seen your name on that particular section, didn't know if you'd stumbled across it yet. Kudos to you for being so involved in your health!! Betsy, I also second Ursula's questions about the IVIG - the port sounds like a bit of a fiasco the first time, but is there any chance of another? Or another type of permanent central access, so that you can start IVIG again? I would agree with you that it sounds like at least some of 's problems could certainly be addressed by taking another stab at IVIG. Good luck as you advocate for her! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 welcome to the list. We look forward to hearing more about Marc and your family. Re: PedPID email list Hello everyone! I am new to the list. My name is Maza and I have a 3 1/2 year old son named Marc who was diagnosed with an IgG2 subclass deficiency right after his second birthday. Marc was a very healthy baby , a few minor colds here and there but suddenly at the age of 18 months he became very ill with pnumococcal meningitis. He was in the hospital for 32 days. The meningitis left Marc with a profound hearing loss. Marc remained healthy for 6 months after the meningitis but once winter hit, he had sinus infection after sinus infection . He was on antibiotics constantly. We were in the peds. office every week( a familiar story to some , I'm sure). And so the story goes.... that Marc was diagnosed with IgG2 immune deficiecy. Marc has since recieved a Cochlear Implant and he recieves monthly IVIG treatments. He is a very happy and very healthy almost 4 year old and we thank God everyday for the miracle of medicine ! I am looking forward to hearing the stories of others and gathering information about immune deficienies. Maza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1999 Report Share Posted August 10, 1999 Ursula- too has been receiving speech therapy. Has since she was 2. She is also on her 2nd set of tubes. She has had rupture ears too many times to count. She was always on antibiotics when they ruptured too. -Glad you had a great time ans were able to relax some. Is Zach allowed to swim in the ocean or lakes? - Welcome to the group. did not titre to her vaccines either they were re-done 2 weeks ago. We have to wait 4 more weeks then re test for antibodies. Hope all is well with you all. === and (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) mom to Evan 6, 4 and Abby Rose 2 _____________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 1999 Report Share Posted August 12, 1999 Fiona welcome to the list. You may recognize several on here from the SCID list. Good to hear Kit is doing well. PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 Lee, welcome to the group. If your son has been declared disabled then he might be able to be carried on the insurance past the normal cutoff. Have you spoken with your insurance company about this possibility? Sometimes, during CVID, some patients have a harder time with the disease than others and are ruled disabled. Social security defines it one way but his doctor might be able to provide you with more definite information. Just a thought. Re: PedPID email list My name is Lee Meyer. I have a son who is now 21-years-old. At the age of 7, he was diagnosed with nephrotic syndrome. For years he had to take prednisone. Finally a new medication came out on the market which the doctors put him on and he was able to be taken off of the steroids. During his pre-teen years he was diagnosed with angioedema (random swelling, ie. hands, feet, forearms, mouth area, fingers, forehead, etc.) Sometimes it is difficult for him to walk because his feet are so swollen or he is unable to close his hand because of swelling. A couple of years later he was diagnosed with Common Variable Immune Deficiency. For several years he has been having a monthly IVIG. Right now, he is on my insurance, but that won't be the case for much longer due to his age. I was wondering how other people pay for this treatment? I would like to hear from people who are in the same or similar situation. I have had difficulty finding people with angioedema, in particular. My e-mail address is: kmeyer1020@... Thanks! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Dear Nuno: We were supposed to be removed from the list, but haven't been as of yet. I just read this post and felt I had to reply. My son Tyler is 8 years old. He has Hyper IgE Syndrome. I was never able to find out if this was genetic, where he got this or how. Our Immunologist told us it was just a " freak " thing that happened. We chose to have another child knowing that we could go through the same thing again. Many people thought we were selfish. Sometimes I agreed. But like you I knew that if this happened again we would be ready. This child would never have to go through the " we don't know " phase. We also knew there was a chance he would be perfectly fine. I wanted to be son excited about being pregnant but I was really scared. It also doesn't help when your family is not supportive. They thought we were crazy. It made things worse when I found research that was done and it really looked like our new baby would have the same problems. (Our immunologist " Sorry " ) Well is now 2 years old. We went through the ear infections and plenty of allergies, but nothing like Tyler. I think it's just normal kid stuff. Our pediatrician, bless her heart, told me I really deserved this one. Looking back, I would never have done anything any differently even if I'd found the info before my pregnancy. You are blessed to have Madalena and the baby on the way. Take care, Sheble o Vilaca wrote: > > > Dear ALAN J SVEJKOVSKY, > > > >Thanks for the information about cord blood banking. Fortunately for us > aour > >consultant in GOS as been as most of the doctors there very professional. > >She already told us about that and at birth they are alredy prepare to > >freeze the blood removed from the cord blood. Our point now is that my wife > >is already 2 months pregnant. Our dilema is if she will do the pre-natal > >test or if she should skip it. The problem is they haven't been able to > identifie > >the gene or the even the excat cause of Madalena's immunodeficiency. They > >know it's a combine immunodeficiency almost reaching the severe that's why > >she was initially diagnose as a SCID. So since they can't find the exact > cause any > >pre-natal test won't be very accurate and can only be perform about the 19 > >weeks pregnacy. So being we may have decided not to perform the test and > to > >have faith that everything will be fine with the new baby. That is why we > >really would like to have a chat with some parents that may have done the > >same thing. We thing that even in the worst scenario if the new baby > suffers > >from the same illness everybody will be prepare to diagnose it in an > earlier > >stage then Madalena was, so his condition will never detriorate as > >Madalena's condition did. > >Best regards and we wish all the best to , > > PedPID email list > >>> > >>> > >>> You recently requested to subscribe to the Pediatric Primary Immune > >>>Deficiency email list. A brief bio about yourself and your reason for > >>>interest in the group is requested. I will then add your name to the > >>>permanent mailing list. > >>> > >>> Thank you for your interest. > >>> > >>> PedPID Moderator > >>> > >>> > >>>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dear , I think we are just living the same drama you have been trough already. I suppose the only real difference is in what concerns the family. Our experience as teach as that no one can understand what it is to have a child like Madalena unless that person has gone trough the same. So we know that we can’t ask our family to understand what is going trough our minds. So being we decided the best was to carefully select the information we were releasing. We just prefer to have a conversation with other parents living the same problem, at the end we understand us much better. My family just thinks that Madalena has been an unlucky situation. Like yourself we decided to take the risk (for that I admire you) and we just hope that this will be the miracle we have been for so long waiting for (an healthy child and who knows a match for Madalena??). By the way my wife his already 2,5 months pregnant. All the best, Nuno I think PedPID email list >> >>> >> >>> >> >>> You recently requested to subscribe to the Pediatric Primary Immune >> >>>Deficiency email list. A brief bio about yourself and your reason for >> >>>interest in the group is requested. I will then add your name to the >> >>>permanent mailing list. >> >>> >> >>> Thank you for your interest. >> >>> >> >>> PedPID Moderator >> >>> >> >>> >> >>>--------------------------- ONElist Sponsor ---------------------------- >> >>> >> >>>Create a list for FRIENDS & FAMILY... >> >>>...and YOU can WIN $100 to Amazon.com. For details, go to >> >>>http://www.onelist.com/info/onereachsplash3.html >> >>> >> >>>------------------------------------------------------------------------ >> >>>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. >> >> >> >> >> >>--------------------------- ONElist Sponsor ---------------------------- >> >> >> >>GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards points, >> >> NO annual fee & rates as low as 9.9 percent FIXED APR. >> >>Apply online today! http://www.onelist.com/ad/nextcard1 >> >> >> >>------------------------------------------------------------------------ >> >>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 August 17, 1999 Report Share Posted August 17, 1999 Nuno: God Bless you and your wife and congradulations on your new one on the way! annette and alissa cvid,asthmatic,ataxia,tired? > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: FW: PedPID email list >Date: Tue, 17 Aug 1999 00:25:32 +0100 > > > >Dear , >I think we are just living the same drama you have been trough already. I >suppose the only real difference is in what concerns the family. Our >experience as teach as that no one can understand what it is to have a >child >like Madalena unless that person has gone trough the same. So we know that >we can’t ask our family to understand what is going trough our minds. So >being we decided the best was to carefully select the information we were >releasing. We just prefer to have a conversation with other parents living >the same problem, at the end we understand us much better. My family just >thinks that Madalena has been an unlucky situation. Like yourself we >decided >to take the risk (for that I admire you) and we just hope that this will be >the miracle we have been for so long waiting for (an healthy child and who >knows a match for Madalena??). By the way my wife his already 2,5 months >pregnant. > All the best, Nuno > >I think > PedPID email list > >> >>> > >> >>> > >> >>> You recently requested to subscribe to the Pediatric Primary >Immune > >> >>>Deficiency email list. A brief bio about yourself and your reason >for > >> >>>interest in the group is requested. I will then add your name to the > >> >>>permanent mailing list. > >> >>> > >> >>> Thank you for your interest. > >> >>> > >> >>> PedPID Moderator > >> >>> > >> >>> > >> >>>--------------------------- ONElist >Sponsor ---------------------------- > >> >>> > >> >>>Create a list for FRIENDS & FAMILY... > >> >>>...and YOU can WIN $100 to Amazon.com. For details, go to > >> >>>http://www.onelist.com/info/onereachsplash3.html > >> >>> > >> > >>>------------------------------------------------------------------------ > >> >>>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. > >> >> > >> >> > >> >>--------------------------- ONElist >Sponsor ---------------------------- > >> >> > >> >>GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards >points, > >> >> NO annual fee & rates as low as 9.9 percent FIXED APR. > >> >>Apply online today! >http://www.onelist.com/ad/nextcard1 > >> >> > >> > >>------------------------------------------------------------------------ > >> >>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 August 17, 1999 Report Share Posted August 17, 1999 Thanks, and God Bless you all, to. PedPID email list >> >> >>> >> >> >>> >> >> >>> You recently requested to subscribe to the Pediatric Primary >>Immune >> >> >>>Deficiency email list. A brief bio about yourself and your reason >>for >> >> >>>interest in the group is requested. I will then add your name to the >> >> >>>permanent mailing list. >> >> >>> >> >> >>> Thank you for your interest. >> >> >>> >> >> >>> PedPID Moderator >> >> >>> >> >> >>> >> >> >>>--------------------------- ONElist >>Sponsor ---------------------------- >> >> >>> >> >> >>>Create a list for FRIENDS & FAMILY... >> >> >>>...and YOU can WIN $100 to Amazon.com. For details, go to >> >> >>>http://www.onelist.com/info/onereachsplash3.html >> >> >>> >> >> >> >>>------------------------------------------------------------------------ >> >> >>>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. >> >> >> >> >> >> >> >> >>--------------------------- ONElist >>Sponsor ---------------------------- >> >> >> >> >> >>GET WHAT YOU DESERVE! A NextCard Platinum VISA: DOUBLE Rewards >>points, >> >> >> NO annual fee & rates as low as 9.9 percent FIXED APR. >> >> >>Apply online today! >>http://www.onelist.com/ad/nextcard1 >> >> >> >> >> >> >>------------------------------------------------------------------------ >> >> >>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 September 15, 1999 Report Share Posted September 15, 1999 , Welcome to the group. I have two sons, one with a very rare form of PID and another son who has some significant health problems. I too, am from Michigan. Where part of the state are you from? Which immunologist do you treat with? Tell us more about your daughter. Autumn mom to Mark Cd5-Cd19 PID/ GERD, A1A, ASA-steroid dependent Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Welcome to the list. How often and how much IVIG does your daughter receive? Please feel free to look through the archives and bring up any old topics that interest you. We look forward to hearing more about you and your family. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Re: PedPID email list We have an 8 year old daughter with an IGG subcatagory deficiency. We fould out about this condition when she was about 3yrs old. She had suffered numerous ear and sinus infections and several bouts of pneumonia by this time. She started recieving IVIG just before her fifth birthday due to a severe bout with pneumonia that was very difficult to treat. With IVIG she is doing much better but still continues to get pneumonia and ear infections each a couple of times a year. She is a very outgoing little girl but struggles in school. We find the school issues sometimes are harder to deal with then PID. We would like to hear from parents who have delt with either school issues and PID or just PID. It is very hard to make outsiders understand what this is all about. My e-mail adress is spamsucks9@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Beth welcome to the list. I'm glad to know that you've been able to find resources on the Ped site. We have several members with pre-teen children who have a PID. Also please feel free to look through the archives and the introductions of all the members. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com PedPID email list archives http://www.netpage.org/PedPID/_PedPID/ PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm Re: PedPID email list Hi, My name is Beth Rathburn & I am the mother of a 12 year old son who has CVID. We have been battling alot of the issues mentioned in your website & none of our doctors ever mentioned that there were any websites, support groups,etc. available for patients with Primary Immune Deficiencies. I found your site " by accident " when I was looking for some info on another medical disorder for a friend...Thank God for " accidents " , otherwise I would be alot less knowledgable! My son has been having alot more symptoms & " breakthroughs " lately, even though he is " maxed out " on his IVIG infusions. He currently receives 30 grams of Venoglobulin S 10% every 2 weeks & he only weighs 68 lbs. Some of the information that I gained from reading your website will hopefully help me get some answers & advice when we go back to see the immunologist in 2 weeks. I look forward to being able to correspond with some people who understand exactly some of the both scary & joyous situations that we experience daily as parents of children with chronic illnesses. Thank you . Beth Rathburn At 08:52 AM 9/21/99 -0400, you wrote: >>>> You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator <<<< Beth Rathburn Vice President International Biological, Inc. P.O.Box 66278 Roseville, Michigan 48066 (313)571-4677 (313)571-5788 fax beth@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 Beth: Welcome to the group. I'm glad you were able to find it and hopefully we can all help each other with the challenges of being parents to our special kids. My so is --he was diagnosed at the age of 15 months with high-risk Luekemia. During chemo he was always sicker than the other kids. The results came back extremely low--almost critical. He was started on IVIG then. After a six month recovery period after he completeed chemo, he was taken off IVIG--he started getting sick again and re-testing found that he had Selective IgG def.;Subcalss def.; and selective antibody def.--his immunologist has lumped these together in a diagnosis of dysgammaglobulinemia. We are currently trying to keep off IVIG for 1 year to see how his system actually is working. The doctors are still unsure if his problems were worsened by the chemo, or if he was def. all along but wasn't picked up on until he started chemo. Sorry--I honestly didn't mean to write a book about him! I wanted to let you know that most of us here are still learning about our kids--and our reactions to their specific illnesses. We give our thoughts, prayers and sometimes advice freely. I hope this is what you have been looking for. --mom to (6), dysgammaglobulinemia; ALL--in remission Re: PedPID email list > > >Hi, >My name is Beth Rathburn & I am the mother of a 12 year old son who has >CVID. We have been battling alot of the issues mentioned in your website & >none of our doctors ever mentioned that there were any websites, support >groups,etc. available for patients with Primary Immune Deficiencies. I found >your site " by accident " when I was looking for some info on another medical >disorder for a friend...Thank God for " accidents " , otherwise I would be alot >less knowledgable! > >My son has been having alot more symptoms & " breakthroughs " lately, even >though he is " maxed out " on his IVIG infusions. He currently receives 30 >grams of Venoglobulin S 10% every 2 weeks & he only weighs 68 lbs. Some of >the information that I gained from reading your website will hopefully help >me get some answers & advice when we go back to see the immunologist in 2 >weeks. > >I look forward to being able to correspond with some people who understand >exactly some of the both scary & joyous situations that we experience daily >as parents of children with chronic illnesses. > >Thank you . > >Beth Rathburn > > > > > >At 08:52 AM 9/21/99 -0400, you wrote: >>>>> > > You recently requested to subscribe to the Pediatric Primary Immune >Deficiency email list. A brief bio about yourself and your reason for >interest in the group is requested. I will then add your name to the >permanent mailing list. > > Thank you for your interest. > > PedPID Moderator > > ><<<< > > > >Beth Rathburn >Vice President >International Biological, Inc. >P.O.Box 66278 >Roseville, Michigan 48066 >(313)571-4677 >(313)571-5788 fax >beth@... > > >>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 September 22, 1999 Report Share Posted September 22, 1999 Rosemarie welcome to the group. Has your son seen an immunologist yet? Is he receiving IVIG? I hope you're able to find valuable resources with the Ped site and our email list. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com PedPID email list archives http://www.netpage.org/PedPID/_PedPID/ PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm Rosemarie Dubrowsky/Westchester/Westcon/US/WestconGroup I am the mother of a 4 year old son with Autism. He has immune issues, and I am interested in getting as much information as possible regarding Immune Deficiency and children so that I may be knowledgable when working on making his life the best that it can be. From: PedPID@... AT int on 09/13/99 10:26 PM To: Rosemarie Dubrowsky/Westchester/Westcon/US/WestconGroup cc: Subject: PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Re: PedPID email list You recently requested to subscribe to the Pediatric Primary Immune Deficiency email list. A brief bio about yourself and your reason for interest in the group is requested. I will then add your name to the permanent mailing list. Thank you for your interest. PedPID Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 1999 Report Share Posted September 23, 1999 Joanne welcome to the list. Have they done any immune status testing yet? I hope he is feeling better soon and your ped has a chance to get to the bottom of things. Please let us know if we can answer any questions. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Re: /PedPIDemaillist.txt My name is Joanna Reinhardt. I am the mother of three children - , Dylan, and Breanna- who will turn three years old on Oct. 5th. (am also step mother to three adult children and grandmother to 8 children...) is my primary reason for wanting to join your list. has had ongoing breathing difficulties and a couple severe bronchitis /asthma attacks. We ended up having to do another emergency doctor visit while we were out of state where I was told to get him IMMEDIATELY out of the home we were staying in or else " he would die " .....( had one former trip to the ER where he received a neb treatment and found great relief.). I was given some meds (from the out of state doc) which one I found out today was an outdated form of treatment and I made an appt. with our reg. pediatrician today. Our current course of action is going to be a progressive one of which I understand is a standard set forth by some heart and lung association that doctors have agreed to adhere to in order to form a universal method of diagnosing and treating asthma......??????........... is starting on Albuteral (sp?) now and we are going to see what happens from here. I understand this email may not make much sense but I am thoroughly confused by the differences in information I've been getting and want to learn as much as I can about my son's condition and treatment in order for me to be better prepared when speaking to our ped. My other two children have milder forms of the same symptoms as so it's possible I'll be going down this same road of confusion at a later date so I'd like to learn as much as I can now. It's not easy having two siblings who don't understand what's happening when needs special attention and the others can't participate, etc....... I just feel so lost and feel that I should have been able to address 's needs a lot sooner than I have. I want to hear about other people's experiences, knowledge, learning processes, successes, failures, etc. in various treatments and strategies.......... Since I am so new to this please don't worry about me posting for a while, if at all if you'd rather I remain silent. I hope I've covered everything you wanted to know. In case you're looking for more information about me and my family, I'll just add: We raise and breed American Quarter Horses. I enjoy barrel racing and my husband and I both hope to do team penning together. Hubby is also a criminal investigator and has been in law enforcement for over 27 years....We are both First Responders....(we keep people alive until the EMT's or Paramedics arrive) ... I have a *VERY* outdated website that you can look at if you want to know more. If you look at the " family " page you will see that my children were all born healthy so I certainly wasn't prepared to have any deviations in my cognitive functioning....... http://www.geocities.com/Heartland/Estates/9211/ If you would like to know more, please feel free to ask. Joanna...........*S*S*S*......... PedPID-owneronelist wrote: > A brief bio about yourself and your reason for interest in the group is requested. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Welcome . Ursala, you mentioned the pneumovax-can you tell me more about what the diagnostic benefits are? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Lynne welcome to the list. I'm so glad to hear the boys are well. Do they receive IVIG? How old were they when they were diagnosed? Please feel free to comment or ask any questions. What are the boys names and ages? We have a web page on the PedPID site for our " PID Pumpkins " . Thanks for joining. Ursula Holleman Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) ICQ # 28592349 http://www.icq.com  PedPID email list archives http://www.netpage.org/PedPID/_PedPID/  PedPID email list introductions http://www.netpage.org/PedPID/_PedPID/introduction.htm   Re: PedPID email list I don't know if I will be able to participate in your website, but it does sound interesting. I have two sons with XLA who are doing wonderfully well. I work three days a week as an oncology nurse as well, so as everyone else I am busy. Thanks for including me in the e-mail list. I am knew to computers, we have had ours just about a year so I don't always find my way back to websites, I think i saved this to favorites. Hope all is well with you and yours, Sincerely, Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Lynn, Welcome to the list. I have learned a lot from the people here. My daughter has congential neutropenia and hypogammagolbinemia. ===== and (congential neutropenia, hypogammaglobulinemia, chronic sinusitis and leukopenia) mom to Evan 6, 4 and Abby Rose 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2008 Report Share Posted August 5, 2008 My name is Mika Fountain Quote Link to comment Share on other sites More sharing options...
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