Guest guest Posted June 7, 2000 Report Share Posted June 7, 2000 Hi all, I know I don't write much but had a few minutes now and some new info I wanted to share. I received a note from s Hopkins University asking us to participate in a bowel screening test. It seems that immunodeficient kids should not receive live vaccines and since Hannah received the live polio vaccine it could have negative reactions. They are saying that in immune deficient kids the polio virus can lie dormant in the intestinal tract for years and then just appear causing paralysis and other complications. They can test stool for this and possibly treat to avoid any flare-ups. It seems to be very serious. If you would like, Ursula, I can mail a copy to you and maybe you could post the specifics. I spent the day today at Boston Children's Hospital with Hannah to see the Rheumatologist. Results are positive that she has JRA. She is a very avid gymnast and competes quite often so she is very disappointed in these results. We are praying and trying to stay optimistic though. On another note about homeschooling; I was thinking of doing it for next fall until I met with the school. Hannah has a 504 in place and the school is willing to work with us regarding her schedule. The Docs think she needs to focus on her emotional, mental and spiritual side and less on her educational side. We have decided to have her attend school for 2 hours/day to participate in music, band and one subject then she will return home with a tutor for 2 more hours, approximately, to finish up her other subjects. This should prove to be less stressful and still gets her the socialization, education and outlet she will need. I am sure there are other schools out there that are willing to work with kids with these types of needs and many docs will request this if necessary. All for now, my thoughts are with you all. (mom to Hannah, CVID and now JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2000 Report Share Posted June 7, 2000 HI , We too were told that kids (people) with immune deficiencies were not supposed to get live virus vaccines. has not been vaccinated since he was 6 months old and he is now 2, and Mandy has been exempted from further vaccine for 2 more years (until right before she turns 6, but we WILL get her continued exemptions one way or another). It also helps that we have a wonderful Allergist/Immunologist, Dr. Betty Wray. And today on our way to see her, we heard on the radio that she was going to become the new Dean of the Medical College of Ga., to which she varified when we saw her. But thankfully, she will continue to have clinic on Thursdays. We love her soooo much as a Doctor and we respect her wisdom concerning immune concerns and allergy concerns. If it were not for her, would probably still be a ball of infected rash with even more scar tissue than he has. And the best thing about her is that she LISTENS to us and our concerns. And even if she is not in clinic and I have a question another staff member will call me back. I hope that the bowel study goes well and no Polio virus is found. I know that a finding like this can be disturbing. I will keep you all in my prayers. polio vaccine > Hi all, > > I know I don't write much but had a few minutes now and some new info > I wanted to share. I received a note from s Hopkins University > asking us to participate in a bowel screening test. It seems that > immunodeficient kids should not receive live vaccines and since > Hannah received the live polio vaccine it could have negative > reactions. They are saying that in immune deficient kids the polio > virus can lie dormant in the intestinal tract for years and then just > appear causing paralysis and other complications. They can test > stool for this and possibly treat to avoid any flare-ups. It seems > to be very serious. If you would like, Ursula, I can mail a copy to > you and maybe you could post the specifics. > I spent the day today at Boston Children's Hospital with Hannah to > see the Rheumatologist. Results are positive that she has JRA. She > is a very avid gymnast and competes quite often so she is very > disappointed in these results. We are praying and trying to stay > optimistic though. > On another note about homeschooling; I was thinking of doing it for > next fall until I met with the school. Hannah has a 504 in place and > the school is willing to work with us regarding her schedule. The > Docs think she needs to focus on her emotional, mental and spiritual > side and less on her educational side. We have decided to have her > attend school for 2 hours/day to participate in music, band and one > subject then she will return home with a tutor for 2 more hours, > approximately, to finish up her other subjects. This should prove to > be less stressful and still gets her the socialization, education and > outlet she will need. I am sure there are other schools out there > that are willing to work with kids with these types of needs and many > docs will request this if necessary. > All for now, my thoughts are with you all. > (mom to Hannah, CVID and now JRA) > > > ------------------------------------------------------------------------ > Old school buds here: > http://click./1/4057/10/_/480115/_/960420743/ > ------------------------------------------------------------------------ > > 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 9, 2000 Report Share Posted June 9, 2000 What is JRA? My son also has had the live vaccine. Looks like I need to contact my doc. How do I find out more? le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2000 Report Share Posted June 9, 2000 when you get a chance I would like to have a copy. thanks. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2000 Report Share Posted June 10, 2000 JRA - Juvinile Rheumatoid Arthritis. I will be sending info as soon as I can relocate it. It is in my pile of papers!!!! I will post everything I have. Good luck, (Hannah 9 yrs. CVID, JRA) > What is JRA? My son also has had the live vaccine. Looks like I need to > contact my doc. How do I find out more? > le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2000 Report Share Posted June 10, 2000 Thank you! Im very interested! Two years ago before IVIG, would get hot swollen joints. But no real explaination was given. We have tried off the IVIG and within weeks he gets a hot swollen joint. My son is also in gymnastics, on team and loves it. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2000 Report Share Posted June 10, 2000 le, How old did you say your son was? Hannah is 9 and also competes - gymnastics is life, the rest is just details with her, she says. I am really having a hard time with this diagnosis though. She has been through a lot but now to hear she has JRA and it is obviously bothering her and already affecting her gymnastics workouts, is difficult. I find myself with nothing to say to her except " I'm sorry. " At my wits end, (Hannah 9, CVID, JRA) --- In PedPIDegroups, Ddpenne@a... wrote: > Thank you! > Im very interested! Two years ago before IVIG, would get hot swollen > joints. But no real explaination was given. We have tried off the IVIG > and within weeks he gets a hot swollen joint. > My son is also in gymnastics, on team and loves it. > le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2000 Report Share Posted June 14, 2000 le - JRA is Juvenile Rheumatoid arthritis. there are several links for information on Macey's web site. I'm not sure if there is a link between the live polio and JRA. Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
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