My 11 year old has JIA, he was diagnosed Aug 2016 and since last week as soon as half term began he felt a lump on the right side of stomach. Took him to A&E who misdiagnosed it so took him back on Sunday and he has an enlarged spleen. They were unable to do a scan to confirm as dept was closed but I am really worried as it was his liver which was enlarged when he was first diagnosed. I have been trying to get hold of someone from his team at GOSH but no one has called back. I am leaving messages with everyone I can think of but I need to know how serious is an enlarged spleen in his condition? Should he go school or rest? His pain is triggered mainly at night and is not sleeping until 1-2am due to the pain. Due to this he is having trouble breathing too. Don't know what to do..
Enlarged Spleen : My 11 year old has JIA, he was... - JIA-at-NRAS
Enlarged Spleen
Hi Rafia298,I hope you have had some responses from elsewhere by now . I phone the rheumatology office at GOSH with concerns and the lady there sends an email to the Nurses or registrars, asking for a phone call back to me . This usually happens within 24/48 hours. The spleen is actually on the left side of the abdomen , and is the biggest part of the lymph system , so can be enlarged/painful if fighting off infection. It can also stop the diaphragm moving properly on breathing which could account for that pain. If it the left side then it might be liver enlargement like before ? This can be an indication of reaction to JIA meds. Have bloods been checked lately ? If pain is still persisting with poor sleep I think I'd keep him off school and resting til this is sorted . Hope this of some help < Anita x
Thank you for the info, I've managed to contact GOSH as my first point of contact is on leave so was not able to get through to the right dept straight away. He has just come back from an emergency appointment and I should have the results in 48 hours. I did stop the meds as I believe this is what triggered the pain, the hospital have also said to stop short term but they did say the swelling has receded so that is a positive sign
So glad you have some help /support now . Don't know how NRAS feel about about other support groups , But there are several good ones on facebook if you are on there ? xx
That would be great! I'm still learning about his condition so all support is fully appreciated! Yes I would definitely like to know about these other groups please x
On Facebook , there are several groups, some UK based some USA (which tend to be more technical / insurance but still a lot in common). What type of JIA does your son have ?
facebook.com/groups/JAParen...
facebook.com/groups/6048795...
facebook.com/groups/7286334...
There are local UK groups too on facebook .
The UK group is very helpful/supportive and active so you would get a response very quickly
Thank you Anitacarol for all your help and support you are a star!
