HI Tony,
You may already have my email ( sorry to repeat myself) but Miriam suggested a I also post here to see if we can locate other parents whose children have HIDS, which I think is a good idea.
My son is now nearly 11 years old and was diagnosed when he was 7 years old. After 7 years of doctors and hospital visits I snapped and refused to leave doctors until the GP agreed to have Ben screened for various tests. The GP was a locum doctor who had not worked at that practice before, he let me see my son's notes but they were generally about me, and not my son. I was deemed an overprotective mother who frequently had my son at the doctors for minor ailments. As you can imagine I was furious. So my advice to any parent is make a fuss and make demands. I am now left with the guilt of waiting 7 years to do it and the damage that may already be done to my sons body. My other advice is that you will be the expert of your child condition and not the doctors. This is not a reflection of the doctors competence but simply that the illness is rare and they depend on your expertise.
My son is now on Anakinra which has helped him lots and thankfully appears to have no side effects. He is now only ill every 3-4 weeks, lasting 2-3 days which is a massive improvement. outwith these periods he is well, which I think may be unusual for this illness but as there is little written about it I am unsure. He only gets Anakinra on the days he is unwell ( which may also be unusual)
His symtoms are as follows: headaches, mouth ulcers, stomach pains, vomiting, diarrhoea high temperatures, lethargy and joint pains.
I have worked out, that for my son it is excessive exercise and any ailment that will cause inflammation in his body that will bring on his symptoms. This can be a strain on his muscles, a cut, cold/virus or even an infected spot.
I would welcome any tips on easing the pain of the injections as he finds them very sore and upsetting. The best I have managed so far, is to accommodate his bizarre rituals ( so he is in control) and the use of frozen peas but would welcome any other tips.
I would also be interested in hearing from young people or adults who have this condition to gain an insight into what has helped/hindered them and if they have any advice for me and my son.
Looking forward to hearing from others with the condition and/or their parents.
Anne