Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Ursula, I hope I don't sound stupid here but.... what is neutropenia and what are the symptoms? I have never heard of this. I am so glad things are going well for you and I hope they stay that way. Walt goes in for his ct scan tuesday so please everyone.....keep your fingers crossed that he has no reaction to the anesthesia. Does anyone know what Sodium Hydrochloride is? He will be getting that and Valium. I have no idea how this will affect his asthma. Thanks and hope everyone is doing well! Donna & Walt-IGA absent-asthma-8wk preemie(now 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 1999 Report Share Posted March 27, 1999 Ursula, Someone else mention neutropenia once before. What is it? I've never heard of this before, so I guess we don't have it. Are Macey's sinuses, still good I hope. is on another antibiotic. Cheryl mom to cvid, chronic sinusitis Ursula Holleman wrote: > > > Test email to the group. Ya'll are way too quiet. > > Macey's infusion went well. Blood pressure and heart rate were wonderful. > > A CBC w/diff showed that she is mildly neutropenic with an ANC of 1500 or > so. We also found out that she had this in December so it seems to be a > chronic thing. I've called Dr. Harville to see what he says. Anyone out > there with a neutrophil problem or dealing with neutropenia? > > Hope everyone is well and doing good. > > Ursula Holleman > Macey's mom (3 yr. old with CVID, asthma, GERD, anemia, sinus disease, grade > I left kidney reflux, Sensory Integration Disorder) > ICQ # 28592349 > www.icq.com > > PedPID email list archives > www.netpage.org/PedPID/_archives/ > > PedPID email list introductions > www.netpage.org/PedPID/_archives/introductions.htm > > ------------------------------------------------------------------------ > Ta Da! Come see our new web site! > http://www.onelist.com > Onelist: A free email community service > ------------------------------------------------------------------------ > 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 May 31, 1999 Report Share Posted May 31, 1999 Urs, Actually, I keep forgetting to ask for the specific type. There always seems to be 100 other things to ask. But looking at his results I think it's IGg, but don't know which subclass. I'll try to remember to ask next time. I did ask however when she planned on restesting his levels, and she said that she wants to wait until he's been on IVIG for at least 2 years. Her reason for this was that it takes 6 or so months to kick in & then you have to be off for ??(can't remember 8 wks?) in order to get true results. So she doen't want to chance going off until his body had a good amount of time to jump start itself. Tomarrow is IVIG day, pray for one stick! Also I expect the h-pylori retest results. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, At 12:30 PM 5/31/99 -0400, you wrote: > > > - congrats on Zach's culture report. hopefully the bug is gone >for good. Have you had a chance to ask the immuno about Zach's PID? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 In a message dated 99-06-07 20:39:27 EDT, you write: << bed. But before that, one more thought. I know that chlorine does not kill of e-coli and other nasties. How is it for our kids - particularily those with chronic sinus px's to go into pools? anythoughts? Helen >> I always find that my son get an ear infection at the YWCA pool and at lakes but doesn't seem to get any at chlorinated pools. But I did read that chlorine kills Friendly bacteria in the stomach.. anybody think this is true? Thanks Sullivan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 1999 Report Share Posted June 20, 1999 Dear Ursula : Hello thanks for the info She recieves periphereal IV immunologist refuses mediport do to infection rate. Can Macey sit on the bench type of child care seat? It allowed Alissa to rest her feet on the bench edge of the back seat. I hope you have a peaceful rest of the week end and I will ask immuno about your type of IVIG. Take care and God Bless! annette mom to Alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: hello >Date: Sat, 19 Jun 1999 20:35:05 -0400 > > > >Dale - enjoy the picnic. What a wonderful time to mention the Ped PID page >to the local chapter leader. Hint. Hint. Hope everything goes well and > continues to stay healthy. > >Annette - sorry to hear that the antibiotics are having to be changed. I >forget, does Alissa have a line or port or do you do peripheral IV's? I >hope everything starts to improve soon. This was Macey's first time >getting >the Polygam S/D and since everything has gone well we are enthused that she >now has another product that she can get. Her feet swell when they hang >for >long periods of time. so when she was in the car so much that day and they >hung from the booster car seat it wasn't good. Next time we'll take some >type of box or bench to put in the floorboard for her feet to rest on. > > - good luck with the immuno. let us know what they decide. does > >have good veins? that will be something to consider when they decide to do >IVIG. > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left >kidney reflux, Sensory Integration Disorder) >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 > > > > > > >------------------------------------------------------------------------ >Congratulations to " PAFind, " our latest ONElist of the Week. >http://www.onelist.com >How is ONElist changing YOUR life? Visit our homepage and let us 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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Hi kimberly, Both my girls have PID and neither have had phenomena yet. My oldest kelsey who will be 4 in Sept is on IVIG and it is just starting to work for her. We are on 2 1/2 weeks with no antibiotics and no signs of infection! . Welcome to the list. Amber Hello > > >Hi I've been luking for a while sorting myself out. > >My name is Kimberley and I am mother to Madeleine who is three and Beth 9 >months. Maddie has an IgG subclass deficiency (all are very low, but I >think it is subclass 2 which is almost non existant....the information was >given to me, but at the time I didn't absorb it.). IgA levels weren't >great. > >Maddie was not diagnosed until August last year. She had chronic ear >infections which continued after grommets (tubes). The ENT said it wouldn't >be a PID as she has never had pneumonia etc ( " Those kids are never out of >hospital " ). Testing and retesting has shown PID. Her body does not respond >to pneumovax. (Don't really know what that means.) Although she is always >(literally always) with a cold, flu. virus of some kind she has been major >illness free. > >The latest concern is that she has fallen off the growth chart. At 36 >months shorter than the average 24 month old. Dr thinks she might not be >eating enough. (I think she is). > >They are stool testing for for giardia and fat absorbtion. Treating her for >giardia regardless. We have been referred to a dietician. > >Is being tiny par for the course in this situation. Sorry if I am under >informed. This is the first place I have been able to find information in >nearly a year of looking. Also I live in Western Australia. so some of our >terminology is different. > >Kimberley > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Kimbely, Hi I am susan, and my dd is 4 and also very tiny. She is off the growth chart for her weight. She weighs 27#. She is tall though 37 " . She is Igg subclass 1 and 4 deficient. She too still had ear infections with tubes on her 3rd set. I believe they tested the pnemonia to see if she has formed antibodies against it. Correct me if I am wrong. also doenst have antibodies against this. Well Gotta go the baby is all orange she decided to color herself with a orange magic marker. === and (neutropenic and immune deficent) mom to Evan 6, 4 and Abby Rose (almost 2) _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Dear Kimberley, Welcome to all the new comers as well. I just wanted you to know that you are not alone and this group is a wonderful way to find out just about anything you would come across in your daily battles against CVID, SCID and any other kind of IgA, IgG, IgE or IgM problem that one can think of. I have two boys that have CVID, asthma, chronic sinus infections etc. One of my boys has had pneumonia several times and the other has not even had it once. One of them gets viral infections all the time and the other gets bacterial infections. My point is that the kids are all different and this disease affects them each a little differently. We have in our discussions realized many similarities that all the kids share too. Lots of the kids with this disease seem to do better in the spring and summer, some however do not. I know that we are enjoying a holiday (as I call it) from the Docs and meds. This follows an unusually awful winter for us, so I am enjoying the break right now. My boys get IVIG every 2 weeks right now as a result of this past winter. I am hoping we will lengthen that time out after we see the immunologist at the end of July. I hope that all the newcomers do not feel overwhelmed with the group. Best thing to do is just jump right in and start asking questions. There are some really really great people here and everyone is really willing to help. We have all been there in one way or another. So keep the faith and jump right in.... Sue W. Mom to Jake (10) and (6) CVID, asthma, GERD, chronic sinusitis..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 1999 Report Share Posted July 3, 1999 Dear Kimberley, Welcome to the group, MY name is annette your description of your daughter is a mirror image of my daughter. When they do not respond to pneumovax they do not respond to the vaccine by making antibodies to the vaccine. I think if I remember correctly the response is in the b cell response. IDF has a site that goes over this and they also put out a wonderful handbook which explains the immune response. Also if ;your child does not respond to pneumovax their is a good reason to see if they respond to other incapsulated bacteria. This is important to know in your child's future approach to treatment. Hope this was some help. Take care and look forward to hearing from you. sincerely, annette mom to alissa cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Hello >Date: Fri, 2 Jul 1999 06:26:32 +0800 > > > >Hi I've been luking for a while sorting myself out. > >My name is Kimberley and I am mother to Madeleine who is three and Beth 9 >months. Maddie has an IgG subclass deficiency (all are very low, but I >think it is subclass 2 which is almost non existant....the information was >given to me, but at the time I didn't absorb it.). IgA levels weren't >great. > >Maddie was not diagnosed until August last year. She had chronic ear >infections which continued after grommets (tubes). The ENT said it wouldn't >be a PID as she has never had pneumonia etc ( " Those kids are never out of >hospital " ). Testing and retesting has shown PID. Her body does not respond >to pneumovax. (Don't really know what that means.) Although she is always >(literally always) with a cold, flu. virus of some kind she has been major >illness free. > >The latest concern is that she has fallen off the growth chart. At 36 >months shorter than the average 24 month old. Dr thinks she might not be >eating enough. (I think she is). > >They are stool testing for for giardia and fat absorbtion. Treating her for >giardia regardless. We have been referred to a dietician. > >Is being tiny par for the course in this situation. Sorry if I am under >informed. This is the first place I have been able to find information in >nearly a year of looking. Also I live in Western Australia. so some of our >terminology is different. > >Kimberley > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 1999 Report Share Posted July 3, 1999 Kimberely, Didn't know if you knew, but there's another group like this for people in Australia and New Zealand. I think is the moderator, and it's run by the New Zealand KIDS Foundation. Have you gotten any info from them? Their address to subscribe is: http://www.onelist.com/subscribe/PIDS-Australasia Here's the website for the group, too: http://www.pidsnz.co.nz I hope you stay here, too, because this is a great place to get info and support. But thought it might be good for you also to contact them or subscribe to their group, since some issues may be specific to your part of the world (i.e. physicians, medical care, and IVIG). Hope that helps! Welcome! (another one, just different spelling...and from the US!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 1999 Report Share Posted July 4, 1999 Welcome, ! My son is 7. He wasn't diagnosed with a PID until he was 5. Isaac has no IgA. He has an IgG subclass deficiency... IgG1 has always been extremely high. It was making most of the antibodies that were measured for the IgG total. The IgG subclasses 2,3, & 4 are all very low. His IgM is low. There are some other labs that come back abnormal. Isaac has never been hospitalized for illnesses... just surgeries. He was constantly ill with all the types of things that Maddie has been ill with. He is now getting IVIGs and this has " helped " bring the IgG subclasses into a " more " normal range. As far as Isaac's growth... he is a big boy. He is off the chart for height and weight. He is a " very selective " eater. His dad and his uncles are all over 6' tall. His older brother is 15 and is almost 6'. His sister is 13 and is almost 5'8 " . I think in Isaac's case his size is genetic. When I look at how ill he has been and what he eats he should be a " stick " . Other Moms: Are most of your PID kids below the normal height and weight?? Kathy mom to Isaac: dysgammaglobulinemia, etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 Dear and Annette (and anyone else that this might apply to), When you state that your child does not respond to the pneummovax, exactly what do you mean? Do they not make enough protection or are the numbers all zeros? I ask because of the Cd5-Cd19 PID. If they are all -0-'s then your children should be checked for the Cd5-Cd19n PID. It is very rare to not respond at all, and what I mean by that....is all zeros to 12 out of 12 titers. Many physicians will call a patient a non-responder when they do not have enough protection/antibody to the pneummovax, while this terminology is correct in a sense, it is different then the Cd5-Cd19 PID who do not make any response at all...not a mark on the page. Addtionally, these patients will not make any response to HIB or meningococcus. If this is the case, then it would be wise to run a Cd5+ test on them (which is quite specific and certain guidelines must be followed by the discovering physician to prevent error). To date there have not been any females found with this PID. PLEASE let me know if you need more information. Annette, I know that you have already mentioned this to your immunologist. Just curious!!!! Autumn mom to Mark Cd5-Cd19 PID/ A1A, Samter's, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 I think the whole medical clinic where my ped is at has the whole weekend and monday off. Knowing my ped she'll call me so early Tuesday morning she'll catch me still sleeping! I am kind of anxious to hear though. If she doesn't call early, I might give her til nine-then I'll call her, LOL. Hope Macey and had a good fourth. Take care, Becky (mom to Ben, 21 mo., CVID, asthma) hello > > > Becky - any culture reports yet? I'm not sure what doctors take today off > and which don't. Hopefully you'll hear something tomorrow. Please let us > know. > > Capri - good to hear from you. Are you doing the study out of New Orleans? > I remember you mentioning it but weren't sure about driving the distance. > Is Ariel on the DDAVP now? Do you notice a decrease in it's effectiveness > when she sweats more? Saturday at the park Macey started pottying more > often sooner in the night. The only thing we could come up with is that she > was sweating heavily, but she hadn't drank more than normal. > > - congrats on being able to wean the Neupogen. Which therapies is > in? Macey gets OT twice a week and was recently discharged from Speech > (hooray!) Macey also has no lymph nodes so far. I can understand the > keeping away from the community ER. Thankfully we only have about a 30 > minute drive to our children's hospital, but our local hospital is very off > limits. Let us know when you hear from the function studies. Macey's > function tests took about a week to get back. > > Kathy - Macey is 50% for height and 90% for weight. But she is also the > spitting image of her dad. And is me made over. I've always said > that if Macey had the build of she would have been diagnosed alot > sooner. Plus if Macey did not have some of her dad's makeup in her then > several of her infections would have been alot worse. When she was septic > in November she took nothing by mouth for a week and lived on IV food. > Thankfully she had that little extra fat in reserve to help out. If > had to be on IV nutrition for a week she would look like a skeleton. Macey > came out of it looking alittle sleeker and having a tiny bit of waist now. > > Sue - mom to M & M - Sorry to hear about your grandmother and my prayers are > with you and your family this week. Glad to hear hubby's on the mend. > Congrats on the job in the fall. Will this be a promotion of sorts or a > transfer? > > - have you ever been to Mexico Beach? > > Off to read alittle. > > Ursula Holleman > Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left > kidney reflux, Sensory Integration Disorder) > 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 > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 THANK YOU URSULA I'LL CHECK THAT OUT...KAREN hello > > > - I'm sorry to hear that Abby was hurt. I hope things are better. I >spent 3 days in the hospital at 12 yrs old for a bicycle fall that gave me a >concussion. I don't even remember getting back to my house but my mom says >I was real spacey. So she sent me off to bed to rest and they went back to >work in the yard. They next thing you know I'm standing on the front porch >losing my lunch. Off to the docs who put me in the hospital. I think it >was a bit overkill but he had lost a little girl the weekend before from the >same thing. If she starts to get real spacey just act quickly. Hope she's >feeling better. > > - sorry to hear he had to start the Neupogen shots. Hope he's not >having too many problems with the pain of the injection. I know there is a >neutropenia list on Onelist also so you might want to check into that. When >Macey had the cyclic problems I subscribed for a while. don't you get >stuff from them? > > - letters, letters, letters. Call your representatives in >Washington. There have been hearings for the past year or so and probably >will be more. The pneumovax is a test that looks at levels of 12 >polysaccharide bacteria's (Autumn or help me out here). It shows >how you respond to the vaccination and what type of memory to antigens you >can develop. They give you the Pneumococcal vaccination and 4 weeks later >draw blood to see how your body responded to putting this vaccination in >your system. Similar to looking at levels of Diphtheria or Tetanus >antibodies. I hope that wasn't too confusing. > > > - good luck with the school. He's such a cutie everyone will love >him anywhere he goes. We're on our way back to ish Rite this month for >a neuro consult. Repeated headaches and working her up for some motor >problems. possible CP but I think it's a long shot and since one doc >documented it on a chart we have to have a neuro " un-document " or rule it >out. I'll let you know when. I'll bring the digital camera this time. > >Belinda - how's Cassie doing? any better with the breathing? > >Helen - sorry to hear Matt's back on the roller coaster again. Hope the >infusions get him back on track and the insurance company is able to be ok >with this. Let us know when the restart date is. > >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 > >>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 October 6, 1999 Report Share Posted October 6, 1999 Urs, My memory is failing me..... Hasn't Macey been checked for CP already? Let me know when you'll be in town. I'ld love to meet you again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Macey was diagnosed with mild CP by her immunologist/Rheumatologist. If we want the diagnosis overruled it has to be done by a neurologist. Since the immunology record is the one people (the school system inparticular) ask for the most we need to know either way. Plus other consulting doctors don't agree with the diagnosis so they want a confirmation. We'll see. Ursula - & Macey (4 yr old w/CVID) mom Re: hello Urs, My memory is failing me..... Hasn't Macey been checked for CP already? Let me know when you'll be in town. I'ld love to meet you again. 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 October 8, 1999 Report Share Posted October 8, 1999 Dear Ursula: I agree, to get a neuro to look at Macey, and know one way or another,as if you did not have enough to deal with, God Bless and let us know what you decide, regards, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: hello >Date: Fri, 8 Oct 1999 17:47:17 -0400 > >Definitely go to get the neuro to look at Macey. My best advise is to get >two opinions so that you will never second guess yourself now or later. >With it was obvious, but with little ones who are very mild if they >have it at all, sometimes it is hard to see it. But getting the right >diagnosis is imparative. Good luck ok ;o) > >P.S. If you need anything, let me know. I have really looked into this >stuff for s sake. >God Bless > > Re: hello > > > > > > > > > >Urs, > >My memory is failing me..... Hasn't Macey been checked for CP already? >Let > >me know when you'll be in town. I'ld love to meet you again. > > > > > >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. > > > >>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. > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Definitely go to get the neuro to look at Macey. My best advise is to get two opinions so that you will never second guess yourself now or later. With it was obvious, but with little ones who are very mild if they have it at all, sometimes it is hard to see it. But getting the right diagnosis is imparative. Good luck ok ;o) P.S. If you need anything, let me know. I have really looked into this stuff for s sake. God Bless Re: hello > > > > >Urs, >My memory is failing me..... Hasn't Macey been checked for CP already? Let >me know when you'll be in town. I'ld love to meet you again. > > >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. > >>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 November 27, 1999 Report Share Posted November 27, 1999 Hi Tina! Angioedema is random swelling. I believe that actually has HAE, which is Hereditary Angioedema. In 's case he swells anytime that he does anything repetively, such as if he writes then his fingers and hands (usually the palms or the top of the hand) will swell. If he walks too much then his feet will swell. If he leans his arm on a countertop then whatever part of his arm was resting on the countertop will swell. The swellings look like huge knots and are hard, almost like bone. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 1999 Report Share Posted November 28, 1999 Hi Tina...welcome to the group!!! I have two children, both whom have been ill since birth. Mark is 9 and suffers from a very, very rare form of PID called Cd5-Cd19. With the Cd5-Cd19 PID the child (only 7 boys with this in the world) have absolutely no antibodies whatsoever and an abundance of a cell called Cd5+. Cd5+ cells cause the body to make autoantibodies that in turn attack the body in the form of severe autoimmune diseases and malignancies. Mark receives IVIG every 21 days for his PID and supportive medications for his various other health problems as a result (crohns disease, leukocytoclastic vasculitis, DI, etc., etc.). Like your son, Mark also is pre-medicated prior to IVIG with Benedryl, Advil and Solumedrol and yet Mark still gets sick and has serious side effects for up to 5 days...sometimes longer. We are hopeful that we will get this under control by switching brands and infusing him at a slower rate...we'll see. My other son, (age 6) suffers from ASA or Samter's syndrome, Alpha 1 Antitrypsin Deficiency and GERD. has been ill his entire life and has under gone many major operations. Recently, the Nissen Fundoplication. I often wondered if the two disorders that my children had were somehow related and often was told " NO " until, our physician contacted someone at the NIH who told him that the A1A (Alpha 1) gene and the immunoglobulin gene sat right next to each other..BINGO!!! I just thought you might find this interesting. There is still so much to understand about medicine. I am confident that we will someday have more answers, it is just such a slow process sometimes <sigh>!!! Hope this has helped and I pray that your kids are well at the moment. Autumn (Mom to Mark Cd5-Cd19 PID/ GERD-post Nissen, A1A, ASA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 1999 Report Share Posted November 28, 1999 Hi, Tina! Welcome!! I have 3 children. My youngest, Isaac, has a PID. The other 2 children are pretty healthy... one has allergies and asthma (under control now) and the other one has scoliosis (wears a brace) and migraines (occasionally). Of course these things usually only flare up when Isaac is having some type of problem. :-) Here are some things I recently learned... which is nothing compared to what others know in this group. Isaac is only 8. He has been receiving IGIV for over 2 years. He has just started having reactions to Gammagard SD since the dose was increased to 25 gms every three weeks. The reactions consisted of severe headache, joint pain, and dizziness. It lasted for about 5 days. For the last infusion we were able to avoid a reaction probably because he received a cortizone type drug via IV prior to the infusion, we pre and post medicated with Motrin. Isaac has zero IgA. So the only product the Dr. will prescribe is Gammagard. I just found out though, that the amount of IgA varies from lot to lot. It never goes above a certain level though. I am in the process of contacting Baxter to find out the level of IgA in his past few infusions to see if there was a higher level than usual - other than the increased amount to 25 gms. I guess Baxter has Gammagard with extremely low levels of IgA for extremely sensitive patients. This product is specially held for them. Let me know if this might be a possibility for your son. Maybe you've already been here and done this. There are MANY more knowledgeable people in this group than me... What does receiving gamma via clisis mean? My son and I recently took part in a patient focus group that introduced us to IGIV being administered subcutaneously. The same product is administered at a very slow rate over a longer period of time and more frequently (1X per week) in smaller amounts. The pump is about 3X5 inches in size. The person that was demonstrating this procedure said that she has less side- effects and she doesn't have a drop of energy prior to her infusion since she self-infuses every week. I guess she is sold on this method. One of the manufacturers is setting up a clinical trial using this process. I thought it was interesting. I guess they have been using this method in Europe. Even though Isaac is NOT going to receive his infusions this way, I mentioned it to Isaac's Dr. He said that he would NEVER let one of his patients infuse this way. He said the rate of infection would be too high. Has anyone heard anything about this??? Just curious... Welcome again, Tina!! Hang in there, you are among friends. Kathy mom to Isaac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 1999 Report Share Posted November 29, 1999 Ouch,!!! How long has the cyst been there Ursula? I am curious because I have something similar on my neck that is smaller, but looks about the same and has been there (noticable) for about 8 months. GEE, I guess when I get some time for me I should have it checked out. I hope all goes well and that it is harmless. I know how not knowing things for sure can be stressful. I Pray that not only 's but your surgery goes well too. And of course that Macey kicks the sinus problems in the patootie!! 's infusion went well today. Again, they gave him some Tylonal before they started. He slept through part of it (thank you God!!). Now all I have to do is get them to get the darn thing started sooner (get there at 8 am and they keep starting about 10 am). We have our SPECT scan Thursday (at least that is what I am being told), which means that we will (or should be) starting HBOT Monday. I am sooooo excited. We have waited almost a year for this. I just hope that has some improvements. I honestly don't care where it is, but if I had one wish granted on where the improvement could be, I would as that his legs would loosen up some so I can see my boy walk by his 2nd birthday, even if it is with a walker. I just want to see him get up and just go. Anyhow, I am writing a book here, so I will go now. hello > > >Sorry to skip out for a while. Macey is halfway through Cefzil for a sinus >infection found in her ethmoid and maxillary sinuses (so much for a good >CT). She will be infused Wednesday and also get IV Rocephin. Her chest is >good, and her UTI culture came back negative. Wednesday night we will spend >the night in Atlanta and see the endocrinologist Thursday. And Friday she >will have her repeat VCUG and renal ultrasound for the kidney reflux. Fun >week huh. > >Next Monday (6th) we will be taking (our 7 yr old) to Macey's ped >surgeon to pre-op for removing a cyst on her neck. It's alittle over 2 cm >and they think it's a branchial cleft cyst. The surgery will be either the >14th or 15th. They will do a quick look biopsy there at Egleston and then >send off the cyst to have a full biopsy done. Has anyone ever heard of this >type of cyst? I took pictures to send to barb so if anyone wants to see >(like ya'll really have nothing better to do :-) ) >http://home.att.net/~katiehbug/iwp2.htm > >Dale - cocktail = knee length for the woman, dark jacket and tie for the >man. (IMHO) My surgery is the 20th so you can see that we're operating on a >thin timeline around here with everyone's doctor visits. Poor Les seems to >be designated chauffeur of the month. > >Ginger - good to see you. Sorry to hear about your niece. I have spoken to >a lot of parents of children with Langerhans histiocytosis. It is a brain >tumor of sorts that requires surgery to correct but the brain surgery has >the side effect of causing central Diabetes Insipidus. Their children have >done well with the surgery but must live with this lifelong side effect. I >hope things turn around and will keep her in our prayers. Here's link that >might help http://www.merck.com/pubs/mmanual/section11/chapter137/137a.htm >Hope Adam feels better soon. I worked 7p7a in the PICU and it was very >difficult to get up and going for meds and dr. appointments for Macey. Now >with her therapy too I know I couldn't have lasted long. I admire your >stamina. I'm hoping to have the page back up by weeks end. I'm switching >to a new server/web hosting service and hopefully will be able to go with >the address www.pedpid.com <http://www.pedpid.com/> . but right now its >under construction and not officially an address yet. Sorry for the >downtime. > >Kathy - glad to hear you had a good trip to Orlando. Georgia will be >starting up in January hopefully once Bass is able to visit and >look things over. I'm very excited to finally be able to help offer the >IDF to other Georgia patients. > > - hope infusion went well today. Glad to hear 's on the mend. > >Tina - sorry to hear Mike is having to deal with the headaches more often. >Macey also had headaches quite a bit until this month. She has had a brain >CT and MRI to try to find the source. Finally we upped her DDAVP and the >headaches are gone. The more fluid she could retain and not pee out the >better her head felt. Does Mike seem to drink or urinate a lot? Macey just >had her bloodwork for JRA (all negative) and when we rule out the CP then >she will see a ped rheumatologist to finish the JRA workup. They think she >has the serum negative JRA (I think its called Still's disease). Any >thoughts? Is Mike's SED and CRP elevated a lot? Is his Rh factor positive? >JRA is all new to us but the PT she started this month seems to be helping a >lot. Macey's immunologist says that autoimmune diseases and PID's are very >much related and is not surprised that she might have JRA. > >Annette - when is Alissa's endocrinology consult scheduled for? > >Kirstie - how did the ENT appointment go? Any news? Hope things are >getting better and I'm glad to hear you're all settled in. > >Ursula - & Macey (4 yr old w/CVID) mom > >>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 November 29, 1999 Report Share Posted November 29, 1999 Ursula: Hope Macey is better since all her appointments and hope the Cefzil is doing its,job, I hope is going to be allright through her surgery. will keep your family in our prayers,it seems you have your share of things to keep you hopping ! Take care, Alissa is going back to the peds today she has broken through her biaxin and is coughing up a storm, we see the endo on the 20th, I called National Jewish yesterday to see if we are reading the donors level of endocrine studies or her own??? God BLess and take care,in our thoughts always, annette and alissa > >Reply-To: PedPIDonelist >To: " PedPID - onelist " <PedPIDonelist> >Subject: hello >Date: Mon, 29 Nov 1999 18:22:21 -0500 > >Sorry to skip out for a while. Macey is halfway through Cefzil for a sinus >infection found in her ethmoid and maxillary sinuses (so much for a good >CT). She will be infused Wednesday and also get IV Rocephin. Her chest is >good, and her UTI culture came back negative. Wednesday night we will >spend >the night in Atlanta and see the endocrinologist Thursday. And Friday she >will have her repeat VCUG and renal ultrasound for the kidney reflux. Fun >week huh. > >Next Monday (6th) we will be taking (our 7 yr old) to Macey's ped >surgeon to pre-op for removing a cyst on her neck. It's alittle over 2 cm >and they think it's a branchial cleft cyst. The surgery will be either the >14th or 15th. They will do a quick look biopsy there at Egleston and then >send off the cyst to have a full biopsy done. Has anyone ever heard of >this >type of cyst? I took pictures to send to barb so if anyone wants to see >(like ya'll really have nothing better to do :-) ) >http://home.att.net/~katiehbug/iwp2.htm > >Dale - cocktail = knee length for the woman, dark jacket and tie for the >man. (IMHO) My surgery is the 20th so you can see that we're operating on >a >thin timeline around here with everyone's doctor visits. Poor Les seems to >be designated chauffeur of the month. > >Ginger - good to see you. Sorry to hear about your niece. I have spoken >to >a lot of parents of children with Langerhans histiocytosis. It is a brain >tumor of sorts that requires surgery to correct but the brain surgery has >the side effect of causing central Diabetes Insipidus. Their children have >done well with the surgery but must live with this lifelong side effect. I >hope things turn around and will keep her in our prayers. Here's link that >might help http://www.merck.com/pubs/mmanual/section11/chapter137/137a.htm >Hope Adam feels better soon. I worked 7p7a in the PICU and it was very >difficult to get up and going for meds and dr. appointments for Macey. Now >with her therapy too I know I couldn't have lasted long. I admire your >stamina. I'm hoping to have the page back up by weeks end. I'm switching >to a new server/web hosting service and hopefully will be able to go with >the address www.pedpid.com <http://www.pedpid.com/> . but right now its >under construction and not officially an address yet. Sorry for the >downtime. > >Kathy - glad to hear you had a good trip to Orlando. Georgia will be >starting up in January hopefully once Bass is able to visit and >look things over. I'm very excited to finally be able to help offer the >IDF to other Georgia patients. > > - hope infusion went well today. Glad to hear 's on the mend. > >Tina - sorry to hear Mike is having to deal with the headaches more often. >Macey also had headaches quite a bit until this month. She has had a brain >CT and MRI to try to find the source. Finally we upped her DDAVP and the >headaches are gone. The more fluid she could retain and not pee out the >better her head felt. Does Mike seem to drink or urinate a lot? Macey >just >had her bloodwork for JRA (all negative) and when we rule out the CP then >she will see a ped rheumatologist to finish the JRA workup. They think she >has the serum negative JRA (I think its called Still's disease). Any >thoughts? Is Mike's SED and CRP elevated a lot? Is his Rh factor >positive? >JRA is all new to us but the PT she started this month seems to be helping >a >lot. Macey's immunologist says that autoimmune diseases and PID's are very >much related and is not surprised that she might have JRA. > >Annette - when is Alissa's endocrinology consult scheduled for? > >Kirstie - how did the ENT appointment go? Any news? Hope things are >getting better and I'm glad to hear you're all settled in. > >Ursula - & Macey (4 yr old w/CVID) mom > > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 Hi Everyone, had his CT scan today on his brain. It went very well. His ventricles looked great and there is absolutely no pressure in his head, YIPPEE!!!! The neurosurgeon said to bring him back in 6 months (before if we get orders to move) for a general follow-up. We are very happy about all of this. And it really does look like we will start HBOT MONDAY, another YIPPEE!! Hope all the pumpkins are well or getting better. God Bless, ;o) hello >> >> >> > >> > >> >Sorry to skip out for a while. Macey is halfway through Cefzil for a >>sinus >> >infection found in her ethmoid and maxillary sinuses (so much for a good >> >CT). She will be infused Wednesday and also get IV Rocephin. Her chest >>is >> >good, and her UTI culture came back negative. Wednesday night we will >>spend >> >the night in Atlanta and see the endocrinologist Thursday. And Friday >>she >> >will have her repeat VCUG and renal ultrasound for the kidney reflux. >>Fun >> >week huh. >> > >> >Next Monday (6th) we will be taking (our 7 yr old) to Macey's ped >> >surgeon to pre-op for removing a cyst on her neck. It's alittle over 2 >>cm >> >and they think it's a branchial cleft cyst. The surgery will be either >>the >> >14th or 15th. They will do a quick look biopsy there at Egleston and >>then >> >send off the cyst to have a full biopsy done. Has anyone ever heard of >>this >> >type of cyst? I took pictures to send to barb so if anyone wants to see >> >(like ya'll really have nothing better to do :-) ) >> >http://home.att.net/~katiehbug/iwp2.htm >> > >> >Dale - cocktail = knee length for the woman, dark jacket and tie for the >> >man. (IMHO) My surgery is the 20th so you can see that we're operating >>on >>a >> >thin timeline around here with everyone's doctor visits. Poor Les seems >>to >> >be designated chauffeur of the month. >> > >> >Ginger - good to see you. Sorry to hear about your niece. I have spoken >>to >> >a lot of parents of children with Langerhans histiocytosis. It is a >>brain >> >tumor of sorts that requires surgery to correct but the brain surgery has >> >the side effect of causing central Diabetes Insipidus. Their children >>have >> >done well with the surgery but must live with this lifelong side effect. >>I >> >hope things turn around and will keep her in our prayers. Here's link >>that >> >might help >>http://www.merck.com/pubs/mmanual/section11/chapter137/137a.htm >> >Hope Adam feels better soon. I worked 7p7a in the PICU and it was very >> >difficult to get up and going for meds and dr. appointments for Macey. >>Now >> >with her therapy too I know I couldn't have lasted long. I admire your >> >stamina. I'm hoping to have the page back up by weeks end. I'm >>switching >> >to a new server/web hosting service and hopefully will be able to go with >> >the address www.pedpid.com <http://www.pedpid.com/> . but right now its >> >under construction and not officially an address yet. Sorry for the >> >downtime. >> > >> >Kathy - glad to hear you had a good trip to Orlando. Georgia will be >> >starting up in January hopefully once Bass is able to visit and >> >look things over. I'm very excited to finally be able to help offer the >> >IDF to other Georgia patients. >> > >> > - hope infusion went well today. Glad to hear 's on the mend. >> > >> >Tina - sorry to hear Mike is having to deal with the headaches more >>often. >> >Macey also had headaches quite a bit until this month. She has had a >>brain >> >CT and MRI to try to find the source. Finally we upped her DDAVP and the >> >headaches are gone. The more fluid she could retain and not pee out the >> >better her head felt. Does Mike seem to drink or urinate a lot? Macey >>just >> >had her bloodwork for JRA (all negative) and when we rule out the CP then >> >she will see a ped rheumatologist to finish the JRA workup. They think >>she >> >has the serum negative JRA (I think its called Still's disease). Any >> >thoughts? Is Mike's SED and CRP elevated a lot? Is his Rh factor >>positive? >> >JRA is all new to us but the PT she started this month seems to be >>helping >>a >> >lot. Macey's immunologist says that autoimmune diseases and PID's are >>very >> >much related and is not surprised that she might have JRA. >> > >> >Annette - when is Alissa's endocrinology consult scheduled for? >> > >> >Kirstie - how did the ENT appointment go? Any news? Hope things are >> >getting better and I'm glad to hear you're all settled in. >> > >> >Ursula - & Macey (4 yr old w/CVID) mom >> > >> >>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. >> >> >>------------------------------------------------------------------------ >>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. >><< text3.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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 1999 Report Share Posted November 30, 1999 : That is wonderful news!!!!!!!!!!!!!!!!! IT sounds great, and hope he continues to blow all the doctors away with his development! God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: hello >Date: Tue, 30 Nov 1999 22:09:01 -0500 > >Hi Everyone, > had his CT scan today on his brain. It went very well. His >ventricles looked great and there is absolutely no pressure in his head, >YIPPEE!!!! The neurosurgeon said to bring him back in 6 months (before if >we get orders to move) for a general follow-up. We are very happy about >all >of this. And it really does look like we will start HBOT MONDAY, another >YIPPEE!! >Hope all the pumpkins are well or getting better. >God Bless, > ;o) > > hello > >> > >> > >> > > >> > > >> >Sorry to skip out for a while. Macey is halfway through Cefzil for a > >>sinus > >> >infection found in her ethmoid and maxillary sinuses (so much for a >good > >> >CT). She will be infused Wednesday and also get IV Rocephin. Her >chest > >>is > >> >good, and her UTI culture came back negative. Wednesday night we will > >>spend > >> >the night in Atlanta and see the endocrinologist Thursday. And Friday > >>she > >> >will have her repeat VCUG and renal ultrasound for the kidney reflux. > >>Fun > >> >week huh. > >> > > >> >Next Monday (6th) we will be taking (our 7 yr old) to Macey's >ped > >> >surgeon to pre-op for removing a cyst on her neck. It's alittle over >2 > >>cm > >> >and they think it's a branchial cleft cyst. The surgery will be >either > >>the > >> >14th or 15th. They will do a quick look biopsy there at Egleston and > >>then > >> >send off the cyst to have a full biopsy done. Has anyone ever heard >of > >>this > >> >type of cyst? I took pictures to send to barb so if anyone wants to >see > >> >(like ya'll really have nothing better to do :-) ) > >> >http://home.att.net/~katiehbug/iwp2.htm > >> > > >> >Dale - cocktail = knee length for the woman, dark jacket and tie for >the > >> >man. (IMHO) My surgery is the 20th so you can see that we're >operating > >>on > >>a > >> >thin timeline around here with everyone's doctor visits. Poor Les >seems > >>to > >> >be designated chauffeur of the month. > >> > > >> >Ginger - good to see you. Sorry to hear about your niece. I have >spoken > >>to > >> >a lot of parents of children with Langerhans histiocytosis. It is a > >>brain > >> >tumor of sorts that requires surgery to correct but the brain surgery >has > >> >the side effect of causing central Diabetes Insipidus. Their children > >>have > >> >done well with the surgery but must live with this lifelong side >effect. > >>I > >> >hope things turn around and will keep her in our prayers. Here's link > >>that > >> >might help > >>http://www.merck.com/pubs/mmanual/section11/chapter137/137a.htm > >> >Hope Adam feels better soon. I worked 7p7a in the PICU and it was >very > >> >difficult to get up and going for meds and dr. appointments for Macey. > >>Now > >> >with her therapy too I know I couldn't have lasted long. I admire >your > >> >stamina. I'm hoping to have the page back up by weeks end. I'm > >>switching > >> >to a new server/web hosting service and hopefully will be able to go >with > >> >the address www.pedpid.com <http://www.pedpid.com/> . but right now >its > >> >under construction and not officially an address yet. Sorry for the > >> >downtime. > >> > > >> >Kathy - glad to hear you had a good trip to Orlando. Georgia will be > >> >starting up in January hopefully once Bass is able to visit >and > >> >look things over. I'm very excited to finally be able to help offer >the > >> >IDF to other Georgia patients. > >> > > >> > - hope infusion went well today. Glad to hear 's on the >mend. > >> > > >> >Tina - sorry to hear Mike is having to deal with the headaches more > >>often. > >> >Macey also had headaches quite a bit until this month. She has had a > >>brain > >> >CT and MRI to try to find the source. Finally we upped her DDAVP and >the > >> >headaches are gone. The more fluid she could retain and not pee out >the > >> >better her head felt. Does Mike seem to drink or urinate a lot? >Macey > >>just > >> >had her bloodwork for JRA (all negative) and when we rule out the CP >then > >> >she will see a ped rheumatologist to finish the JRA workup. They >think > >>she > >> >has the serum negative JRA (I think its called Still's disease). Any > >> >thoughts? Is Mike's SED and CRP elevated a lot? Is his Rh factor > >>positive? > >> >JRA is all new to us but the PT she started this month seems to be > >>helping > >>a > >> >lot. Macey's immunologist says that autoimmune diseases and PID's are > >>very > >> >much related and is not surprised that she might have JRA. > >> > > >> >Annette - when is Alissa's endocrinology consult scheduled for? > >> > > >> >Kirstie - how did the ENT appointment go? Any news? Hope things are > >> >getting better and I'm glad to hear you're all settled in. > >> > > >> >Ursula - & Macey (4 yr old w/CVID) mom > >> > > >> >>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. > >> > >> > >>------------------------------------------------------------------------ > >>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. > >><< text3.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. > > >------------------------------------------------------------------------ >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. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
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