Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Belinda, How high is the IgM level? Do you have a reference range? I ask only because there is a PID called hyper IgM syndrome, but I believe the level has to be very high. Is your daughter on IVIG? Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, GERD, A1A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Hi everyone, I have had such a discouraging day. I took kelsey for her IVIG this morning. Now last infusion we used a sedative for her but it dident seem to make much difference so i told the nurse that i will go back to benadryl for the next one. Well she dident tell anyone so the docs orders were to sedate. I gave kelsey her premeds which included benadryl and went to the appt. Well when they found out about the benadryl they called the doc and he refused to do the infusion. I am mad b/c it relly came acreoss as a power trip and there was no medical reason why kelsey couldnt have the treatment today or no reason why he couldnt change the orders over the phone for the nurse. I am worried now that there will be a lapse between treatments. They said this wont matter but then why do they say 6-8 treatments before we see results? So we have an appt to meet with him on the 15th to talk about a treatment plan and then she will get her infusion. What a messs but i am so mad. If you are mad at me than fine but dont take it out on my kid. Amber ALLYSCASSI@... wrote: > > From: ALLYSCASSI@... > > Anyone know the significance of an elevated igm level? I was reviewing > Cassie's blood work and her igm levels were high. I go see the immunologist > tomorrow, but I was hoping I might get some ideas beforehand. Hope everyone > has a wonderful week. > > Thanks, > Belinda Rose, mom to Cassie, igg immunodefficient, asthma, chronic sinusitis > > ------------------------------------------------------------------------ > What do lizards and rock music have in common? > http://www.onelist.com > They both have communities at ONElist. Find yours 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 June 7, 1999 Report Share Posted June 7, 1999 Cassie is still on IVIG. Her igm level was 239 prior to starting the ivig 2 years ago. I just kind of stumbled across some blood work that they ran before, and I saw that level. The normal range at that time is 44 to 173. I really do not think they missed it, I just happened to come across this. I was just going to bring it to the immunologist attention tomorrow at her appointment. I do not have copies of the blood work done after diagnosis of the igg immunodefficiency. I think I might have to go ask for those now. I was just curious to see if and what those numbers meant at that time. Thanks!! Belinda Rose, mom to Cassie, igg immunodefficiency, asthma, chronic sinusitis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Ursula, This might seem like a silly question, but how can each lab have different numbers for a range that is measuring the same thing? I can understand adult versus pediatric ranges, but not igm ranges being different for different labs. The normal range that was put for this particular lab was normal being 43-173. Cassie's was at 239. Thanks for your information. I am off to make dinner. Hope everyone has a nice evening. Belinda Rose, Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Ursula, Thanks for your input. I guess it really made me think about Cassie's overall health at the time that this bloodwork was done. She was literally sick all the time. I will bring that issue up tomorrow, and see what results I get. I do hope I can get some answers. If it is a diagnostic tool to how she is feeling right now, then I would say not to worry. However, if her levels have always been high, or borderline, I want to find out if this is something that we might want to look into. Exactly what does igm do for the body? Belinda Rose, mom to Cassie, igg immunodefficient, asthma, chronic sinusitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Belinda - realizing that all different labs have all different ranges I've looked up the reference ranges in the nursing lab reference book we use for school. IgM - adult (55-375) children (20-200) That might make things seem alittle more in range. Hope that helps. Urs Re: igm From: ALLYSCASSI@... Cassie is still on IVIG. Her igm level was 239 prior to starting the ivig 2 years ago. I just kind of stumbled across some blood work that they ran before, and I saw that level. The normal range at that time is 44 to 173. I really do not think they missed it, I just happened to come across this. I was just going to bring it to the immunologist attention tomorrow at her appointment. I do not have copies of the blood work done after diagnosis of the igg immunodefficiency. I think I might have to go ask for those now. I was just curious to see if and what those numbers meant at that time. Thanks!! Belinda Rose, mom to Cassie, igg immunodefficiency, asthma, chronic sinusitis. ------------------------------------------------------------------------ How many communities do you think join ONElist each week? http://www.onelist.com More than 5,000! Create yours now! ------------------------------------------------------------------------ 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 June 7, 1999 Report Share Posted June 7, 1999 Dear Amber, I am sorry to hear that you had such a bad experience. I would speak " openly " with the physician when you see him and make sure that the two of you decide together what is best for Kinsey. You have to develop a working partnership when dealing with chronic illnesses and some physicians are not always eagar to do this. Hope you have a better day tomorrow and hope that everyone stays healthy in the meantime!! Autumn mom to Mark Cd5- Cd19 PID/ Samter's syndrome, GERD, A1A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Belinda - I believe after 2 yrs you have stated the million dollar question. And at times I'm sure a variation in ranges has diagnosed and/or misdiagnosed many people. Between lab draws at our local children's hospital, Specialty Labs in California, Duke University, and Quest Laboratories we have had four different ranges. The way it was explained to me is that the actual result is an indicator and the patient's health is the " diagnoser " . In other words if an IgA level is low at one lab but low normal at another lab then look at the patients clinical status. IE: Macey's IgA is deficient at some labs but normal at 2 others. But Macey (lately) hasn't been symptomatic of IgA deficiency. It would be nice if the IDF or Duke or some other reknown immunology center could come up with one set group of ranges for all the immune globulin's but until then alot of immunologists are basing treatment on the clinical status of a patient. Just my .02 at making " sense " out of all this. Ursula Re: igm From: ALLYSCASSI@... Ursula, This might seem like a silly question, but how can each lab have different numbers for a range that is measuring the same thing? I can understand adult versus pediatric ranges, but not igm ranges being different for different labs. The normal range that was put for this particular lab was normal being 43-173. Cassie's was at 239. Thanks for your information. I am off to make dinner. Hope everyone has a nice evening. Belinda Rose, Mom to Cassie, igg immunodefficient, asthma, chronic sinusitis ------------------------------------------------------------------------ Where do some of the Internet's largest email lists reside? http://www.onelist.com At ONElist - the most scalable and reliable service on the Internet. ------------------------------------------------------------------------ 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...
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