My grand-daughter, aged 14, was dx a year ago. She is the love of my life. Her Mum, my daughter, is putting on a charity ball for research into this disease. I volunteered to help with auction lots and she gave me a letter to send to prospective contributors. I was horrified to read that the prognosis for child-onset is 5 years. Is this true or is it this worst scenario? We are in London, UK and grandbabby is attending an excellent specialist hosp with a team of specialist docs.
She is seeming to cope well and has gone away for the weekend with her school. Obviously the pains and headaches, digestive probs and other symptoms are there but she still does this mad work out (from US!) daily which has been recommended. She is on whatever meds she needs to be on, I don't know the details. Is there anywhere in the world where there is a cure? I would sell my house and take her there. Sorry, I am very shocked .
I am sorry to note that your 14 year old granddaughter is suffering from lupus. The prognosis of childhood onset lupus is worse than the adult onset one because there is greater likelihood of kidney involvement (lupus nephritis), protein loss in urine, seizures, low platelet count or thrombocytopenia leading to bleeds, hemolytic anemia, and recurrent fever. However, the prognosis depends on how well controlled and how severe is the disease. Continued medical care and compliance with treatment helps the child lead a near normal life. It is very important to educate the child (as you may have already done) about her disease and how to manage it. Also, people closely associated with her should know about his disease. The children also face many psychological drawbacks, depression and anxiety due to their disease. This also needs to be handled with care. Also, side effects of medications have to be faced. So, yes, life can be tough and hence it is important for the child and her family to learn adequate coping skills. I am sure she is in good hands and wish her good luck and courage for her journey into adulthood. Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
Thank you so much for your time, trouble and truthful expert information. I appreciate it so much. Please tell me one more thing: my Gdaughter came back to UK from a holiday at Disney, US,( ebcot? Florida? Sorry not good at geog re US.) This is when she first presented and was diagnosed. I don't want her to have lupus, of course, but could she have picked something up, been bitten by a strange insect etc. which we would not find in UK? Do any diseases, which are common in the US, mirror lupus but are really something else? She is being treated at University College Hospital London by an excellent team but do you think they could have misdiagnosed?
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