Hi! I've been a member of these forums for a while but there never used to be a parents of JIA kids bit :-) I have a 6 year old daughter who has 'extended oligo' aka polyarticular! Shes had it since 2 years (possibly symptoms before) and is on methotrexate. We've just had dosage increase after a flare up-still awaiting mtx…
Hello all another 3day steriod infusion completed last week, lots of traumas again, due to the Morquio her veins are thinning and hardening so it took 4 attempts to do the cannula! They also started her on methotrexate at the same time. I took her back yesterday for her 2nd injection and she is in bed today missing school…
Hi all, Just wondered if anyone else is taking part in the clinical trials into Humira (Adulimumab). Freya (6) went for her randomisation visit today and started her first injection of Humira/Placebo, following persistent extended oligarticular arthritis and mode-sev bilateral Uveitis. I'd really like to make contact with…
After 2 years, 4 months and 3 days of entanercept controlled remission P has a clicky, sore and stiff finger joint in the mornings. It's been the same for 9 days so there's something odd going on. There is no obvious swelling though, and I can't feel any fluid in there - but, I'm not a trained rheumatologist. This morning…
Hi All, have been looking for ages about this subject but couldn't find much until now! My son is now 5years old. When he was 2 1/2 years old, we were camping in France when he couldn't walk for 10 days every morning. He got better through the day after pain medication but was unable to weight bare every morning. As I was…
Hi, I just wondered what any parents have been told about how long their child needs to take Methotrexate for? My daughter has been on Methotrexate for 18 months and has been symptom free since April 2011 when she last had steroid joint injections into her knees. At her hospital appointment on Monday we asked the…
Hi, my 10yr old daughter has suffered with Multiple Epipyseal Dysplasia for almost 4yrs. Recently she suffered a very rough patch with chronic continual aches/pains and her consultant refered her to the rheumatolgist. After a 3 day spell in hospital for steriod infusion and various tests they confirmed that her m.e.d had…
Hi, Just thought I'd pop on to give an update. Tom was re admitted to the LGI last week and was ng tube fed for seven days, he tolerated it well eventually. He was discharged on tuesday this week and had tube removed. His is on oral steroids now and eating well. His diagnosis is severe Crohns Disease. It's in his stomach…
Hi, I have a 3 year old son who was diagnosed with JIA at the age of 1 and a half. His under Great Ormond st which is an amazing hospital, but my son often (once every 5-6week) becomes really ill with, high temps, sickness, rash and has been admitted to hospital a number of times becasue of this. Gt ormond st thought it…
https://www.facebook.com/pages/Amelias-Invisible-Disabilities-Trust/283823754989286 please like this page it is a charity set up to help children with invisible disabilties as my middle daughter has JIA and my eldest has something diffrent every like this page gets i donate money please support us too
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