Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 In a message dated 10/29/00 2:30:16 PM Pacific Standard Time, mwheel99@... writes: << Juvinile Rheumatoid Arthritis (JRA), >> Hi, Thanks for the info. 3 years ago had this test due to his knee sweeling. We ended up in the hospital but there was no explanation why it was happening. JRA was negative at that time. He also had an elbow become red hot and swell while we were in the Dr office.(three years ago) They can't explain why. It has not happened again since IVIG until this weekend. He is doing better today. The swelling in the knee has gone down and he has not complained about pain. I have e mailed his immune Doc to see what he thinks. Thanks for the info. Maybe its something we need toi address. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 MAry, Thanks for the information. s knee was a little puffy today and warm around the joint. He says it doesn't hurt. I have made an appt with his pediatrician to have him look at it. Thanks again for the info. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 - do they do routine liver levels on Hannah? When Macey was on Naproxen they scheduled lab work every so often to make sure her liver levels weren't elevated. The Rheumatologist said it was because she was on the Naproxen. Thankfully she hasn't had to take any since July so the lab work was discontinued. 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 October 31, 2000 Report Share Posted October 31, 2000 Alberto, hello! I noticed from your group posting that you are questioning Anas' diagnosis of CVID. My interest has been roused (naturally curious, you know!) and I am wondering what progress you have made with the search for help for your daughters' PIDS. I sincerly hope she is doing well at the moment, Take care, - mum to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 from Dale, Mom to Katy, CVID, age 16 Dear Alberto, I'm in a hurry, so hope this doesn't come out jumbled. First of all, greetings! Then -- not ALL of our pumpkins have serious complications -- that is a result of only the sicker ones having as much to talk about. I hope that didn't come across poorly, but my impressions is that there are lots of pumpkins that are getting their IVIG and going about their lives pretty normally. They usually participate in this group for a while and then get too busy living almost normal lives to keep up with our discussions. My daughter, Katy, has NEVER had a lung infection, only 1 major-major sinus infection. Most of her problems have been digestive and fatigue. The rash pictures of course do not come through this group's set up. But, I do know that Katy's various rashes have so far all come up as fungus. Maybe that will help you isolate this one. And finally, at 9 months of IVIG I was ranting and raving for some improvement and I couldn't see it, but at 1 year I reviewed my notes for one year earlier and the change was obvious! Best wishes for you and yours, In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 , Liver damage is a very rare side effect of all non-steroidal anti-inflammatory drugs (naproxen included). I personally think that maybe the liver function tests should only be checked every time has her bloods taken for immunological tests thus avoiding any further " sticks " . I think you might have been very unfortunate so far with the nurses. I cannulate my daughter every three weeks and she has got dreadful veins, but I always manage to find one somewhere. There are many ways in which you can make veins to " stand " better: - Warming the area - Avoiding EMLA, which makes veins to disappear. - Lots of drinking water in the 24 hours prior to the infusion - Trying different sites, like veins in the feet or ankles (long saphenous vein). - There is a cream called " percutol " (this is available in the UK and I think it is also available in the USA, but maybe with a different name) that contains GTN and is used by patient suffering from angina. This cream, used in small amounts over the vein to be used has a very potent vasodilator effect and makes cannulation much easier. - And above all...lots and lots of patience. The problem with the veins rolling and blowing is due to lack of experience. might need a port in the future, by from what you tell us I personally think she is very far from needing one. I would try and avoid a port as long as you can as in the end it is a foreign body in permanent contact with her blood stream and will cause more complications than the sticks. All the best, Alberto, Ana's dad (??CVID), 3 years old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 Hi, , Ana's Immunologist has frequently used the terms " evolving immunodeficiency " , lymphocyte functional defect and a " problem of immune regulation " and she has also introduced us to the concept of CVID, but I know she has not pin-pointed the problem yet... after over a year of investigations. Ana's Immunoglobulins were normal when she was at her worst clinically, but her IgA, IgM and IgG2 have been low since September 99. In January 2000 they wanted to start her on steroids, but I insisted we should try IVIG first, but nothing has improved since that wasn't already improving. From my correspondence with the group I have noticed that all the pumpkins seem to have a serious problem with repeated infections (respiratory, sinus, ears, urinary,...), but Ana only suffers from upper respiratory tract infections, and apart from more cough and runnier nose than normally she is never poorly in herself: she is neither more tired, lethargic or suffers from temperature. Anyway, I enclose several documents with this e-mail for whoever is interested in reading them: Ana's medical history, her immunoglobulins and 4 pictures so you can see this unusual rash she had last year, and a photograph from this summer (some improvement!). Any contribution is welcome. Sorry about the size of the message. Love for all, Alberto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 - what is Hannah's range of motion like in her affected joints? The Rheumatologist macey saw said she didn't have JRA because she had full range of motion. The swelling and pain is still there with the therapist saying she's still very symptomatic but we'll just keeping going to therapy. 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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