My 17 yo son was diagnosed with juvenile arthritis around 5 years ago and then in the same year epilepsy.
He was always a high achieving kid who loves sport and has variously competed at a high level in track cycling, volleyball and more recently american football. Within the next few months into 2013 -2014 he began to suffer from severe abdominal pain which saw him in and out of hospital and off school for long periods. Looking back he must have had the beginnings of depression. At a similar time his seizures recommenced after a period of control and the new meds made him gain around 20kgs in a short period having a huge impact on his body image. Although we did not appreciate the depth of his suffering, we managed to link him in with a chronic pain service which included counselling support and of course was seeing his specialists for rheumatology, neurology and gastro but none of this really addressed his needs. He worked hard at implementing everyones suggestions. He worked hard to lose the 20kgs and get back on track academically. While he managed to get back to school full time at the start of this year (and stay that way for the last 6 months) with the support of a community counsellor, things have seriously deteriorated in the last 3 weeks. It all came to a head and he has reached crisis. It has just been impossible for him to maintain his schooling with an average of fortnightly seizures since Christmas this year, building work requirements for VCE and loads of medical appointments. It is amazing in many ways that he has hung in for so long. It has been a cycle of missing work, falling behind, failing SACs , trying to catch up and rapidly plummeting self esteem. He is now again not at school at all. While we have asked for referral to a mental health team, this has yet to come into effect and we are all really struggling to know the best kinds of things to do to help him get well and stay well this time. We feel we have really let him down and that he has suffered so much over the last few years. It makes me cry to think of the loss of his dreams. He has wanted to do so much and now has failed chemistry, failed maths, just holding on to physics and failing english if he doesnt get back to complete some missed work before the end of term. (which he wont) . Part of me wants him to get back and finish it so that he doesnt keep falling behind if he wants to complete year 11 next semester. But mostly I just want him to get better and find a pathway that works for him. To find what makes him happy and keeps his options open for the future so that if his seizures stop, he can do things which he enjoys. I am also really sad about the loss of his dreams for a college pathway. He really wanted to get a scholarship for american football but given the recent knee surgery for arthritis, and it looks like more surgery is needed on a toe and possibly the other knee, we are not sure if this is realistic). Although the last thing we want is to dampen his dreams, we want him to know he can have a plan B. We really hope that this time around we will finally put some real long term solutions in place. For the moment, we are just trying to learn from our mistakes the first time round and be not confrontational re a return to school. While the expectation is there for the long term, it is about when he is ready. We are just trying to talk to him about the obstacles as he sees them, how to keep up a routine even though he doesnt feel like it, to do things he enjoys and keep some friendships going. It is having a huge impact on all of us including his 2 younger brothers and I for one am about to fall apart. Im not sure if anyone out there has had a similar experience and come out the other side but I would like to hear about it. I also want to hear about practical suggestions for surviving until the team comes into effect. Many thanks
