jillian Posted February 29, 2012 Share Posted February 29, 2012 I need help. DD was just diagnosed with Systemic JIA/JRA (arthritis). She's an very high doses of Prednisone currently and if need be once we taper off of the steroids she'll be on injected medication. The steroids and the injected meds both compromise the immune system. We are already pretty good about not being around people visibly ill, however I do sometimes need to bring her out with me. Also we will be spending quite some time in the dr's office--for lab draws and until we get a hard treatment plan working. What can I do to minimize her risk of exposure to germs/bacteria/viruses to keep her from getting sick. The complications can be quite extreme should she get ill (as for any Immuno-compromised/suppressed child). Can I get some practical tips for handling this. Quote Link to comment Share on other sites More sharing options...
Joanne Posted March 1, 2012 Share Posted March 1, 2012 My dd has JRA, and was diagnosed about 6 years ago. Her first meds were steriods (and they had lasting, serious ramifications for her body weight and self-image). I did *not* chose to limit exposure, or operate in the realm of taking immuno-suppressed precautions. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted March 1, 2012 Share Posted March 1, 2012 :grouphug: The things we do to help my son are in attempts to boost his immunity which would be, I'm sure, counteractive when you need to suppress it instead. Are their any JRA forums so you could get a handle on how other parents manage this aspect? :grouphug: Quote Link to comment Share on other sites More sharing options...
jillian Posted March 1, 2012 Author Share Posted March 1, 2012 I haven't found anything yet. We just got diagnosed this week (via the Ped. Rheum in the hospital while we were inpatient) and go to the Ped. Rheum tomorrow morning. This is something we will be talking about at length how much precaution we should be taking and such but just trying to figure out exactly how much I should be worrying. I have the Purell for while we are out and such and we wash hands already. We dont' need to suppress it, we need to ensure she doesn't get sick, her medications cause suppression/compromised immune system. Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted March 1, 2012 Share Posted March 1, 2012 Clinics and hospitals often have special waiting rooms for this kind of situation. You can call and see what they suggest. Quote Link to comment Share on other sites More sharing options...
jillian Posted March 1, 2012 Author Share Posted March 1, 2012 Our Rheum's office doesn't have separate rooms. Our Ped doesn't either and the room is extremely small. Her systemic features make her getting sick more worrisome because her arthritis causes some significant systemic features. I am really only super worried while we are on the steroids, if we go onto other medications we would be either daily injection of Anakinra or Rilonacept (as part of a clinical trial, weekly injection to see if it's usable against SJIA) she'll still have to avoid getting sick but it won't be as severe of a suppression as it is right now with the steroids. Quote Link to comment Share on other sites More sharing options...
lauranc Posted March 1, 2012 Share Posted March 1, 2012 (edited) I have a child with JRA-- we do not necessarily *limit* where we go. I do tend to stay away from known sick people though. Flu shot every year. That's about it. ETA: my child is on immunosuppressant meds for the arthritis Edited March 1, 2012 by lauranc forgot to say Quote Link to comment Share on other sites More sharing options...
Jyniffrec Posted March 1, 2012 Share Posted March 1, 2012 We have been hospitalized many, many times (dozens) because of exposure to illness. The steps I take are to go in and tell the receptionist at the doctor's office that we are there and sign in and then tell them that we will be waiting in the car. They call us when they are ready to take us back. I also stay home when I know bad stuff is going around, that unfortunately includes church or other important things in our lives. We also don't often got to childcare at the YMCA or use public restrooms if we can avoid it. If we can't, I tell the caregivers to be careful and I make sure the ones who are illness prone wash well afterwards. I'm not a naturally paranoid person. It took a long time for me to realize these things were necessary and it was hard to accept. One of our children has an auto-immune disease (Crohns) and was on predisone. She was hospitalized more while she was on the steroids but she was also very sick otherwise. Trial and error will tell you how worried and protective you should be. :grouphug: I'm glad you guys figured out what is wrong. I hope the medication helps. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted March 1, 2012 Share Posted March 1, 2012 My son had leukemia, and we purposely suppressed his immune system for over 3 years to kill the cancer, so maybe these things might be helpful. We had him wear an N-95 mask when we were in public places with a lot of people, we continued with our regular activities other than church (a lot of sick kids come to our church every week), we kept non-alcohol hand cleaner on us at all times for moments when he would touch shopping carts or shake hands with people, I cleaned all of the surfaces in our house daily, and everyone changed clothing upon returning home. We gave him probiotics to keep his gut strong. He never had any bad reactions to illnesses though he did have the flu (immunizations to not take in immune compromized kids well, CHOP did an interesting study on that), RSV, and strep. He was hospitalized with RSV, but it was because his ANC was only 20 (not 2000, really 20). He was bored sitting in the hospital feeling fine other than a slight fever. A few things we were told were the most dangerous illnesses come from within, so we needed to keep him on probiotics to keep the gut flora in check, call in for every fever so antibiotics could be started right away, and stay away from lakes and swimming pools. Obviously, your dd's doctors are a resource for information, so be open about those questions, and try to find a network of other JRA parents who have been given different advice by different doctors. Sometimes combining information from many doctors can help you pinpoint what works best for your child. My son had some great doctors, but I learned a lot from other parents too. It is scary at first. :grouphug: Quote Link to comment Share on other sites More sharing options...
JudoMom Posted March 1, 2012 Share Posted March 1, 2012 I have a child with JRA-- we do not necessarily *limit* where we go. I do tend to stay away from known sick people though. Flu shot every year. That's about it. ETA: my child is on immunosuppressant meds for the arthritis :iagree: When my ds9 was on immunosuppressants for JRA, we didn't limit either. I chose not to do flu shots as well. I've been on immunosuppressants for almost a year now, as well, and haven't limited where I go. Quote Link to comment Share on other sites More sharing options...
jillian Posted March 1, 2012 Author Share Posted March 1, 2012 Thank you everyone. We go tomorrow to the Rheum. so I am having lots of questions written down as I think of them. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 1, 2012 Share Posted March 1, 2012 We didnt' have auto immune issues but IgA and IgG deficiencies. A GOOD probiotic seemed our best bet---we used Supremadophillus. We also did fish oil pills----think the day when all kids were give cod liver oil to help avoid illness. Wash hands regularly and at home think of things like door knobs, phones, computer keyboards, etc. if someone gets sick. Also, use soap nad water whenever you can as the hand sanitizers don't kill everything. Quote Link to comment Share on other sites More sharing options...
ChemMommy Posted March 1, 2012 Share Posted March 1, 2012 One child with IgA and IgG deficiencies, too. It was tough at first; she was a very sick child and we limited trips out of the house and avoided sick people for several years until the infusions of gamma globulins through a port stabilized her. Yes, we carried purell and wiped down tables at restaurants. Yes, we wore a mask at the doctor's office, not because she was sick, but because they were! LOL Yes, we missed parties and family events. Yes, we discovered that most people would go out of there way to say they'd been sick and that we should avoid them. Yes, we learned that you can ask to use a room that no one has used that day at the doctor's office--and get it! Yes, we treated every single fever and cut aggressively. Will you have to be that draconian? Probably not. Your child has an immune system; it is just suppressed. Will you want to limit exposure to sick people? Definitely, in my opinion. One of the big reasons we homeschooled was to keep her from the germs that circulate around a local school. Also, no public daycares or church nurseries. I hope that this time in your life is short. Spring is coming and RSV season is nearing its end. Maybe some nice warm weather will hit and the germ load everywhere can do down. Honestly, once we got used to constantly thinking about germs, it just because a part of life. My dd, even at 5, was great at asking for purell or keeping her mask on. Hugs to you.....this has to be SO hard!!! Quote Link to comment Share on other sites More sharing options...
jillian Posted March 1, 2012 Author Share Posted March 1, 2012 Thank you. We went out yesterday and did some purell while out and washed when we got home. My big worry is the doctor's offices that we will be in and out of for awhile. I appreciate the practical tips. I am going to start pushing for first available appointments too. Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted March 1, 2012 Share Posted March 1, 2012 These are my absolute favorites: http://http://sanitationtools.startmystore.com/images/For%20More%20Info%20on%20Sani-Hands%20II.pdf I hope that link works. They're called Sani-Hands; just a big tub of wet-wipes, but hospital-grade that kill everything. Everyone uses one when we get back in the car, and I have everyone wipe off the car handles, etc. with them. We keep another tub in the mudroom at home. I have Purell in my purse, too, but these are so much better. I buy them by the case at the local janitor-supply store. There are 6 tubs in a case for between $35-$40, if I'm remembering correctly. :grouphug: It's scary. Quote Link to comment Share on other sites More sharing options...
jillian Posted March 5, 2012 Author Share Posted March 5, 2012 Thank you everyone. I am using the face masks to help when we go places that are close quarters like the DMV (repeatedly) and the small dr. office waiting room. We are washing more too (being hyper vigilant) I am also running my dishwasher on sanitize (love that function) Quote Link to comment Share on other sites More sharing options...
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