Hi all. I am now the full time carer for my nearly 15year old son, who for the last 18 months has between 20 and 300 dissociated states (blackouts) a day. At 8, he had a painful growth disorder (severs disease) however it wasn't diagnosed until 3 years later, and the original advice made things a lot worse. He has been on so many pain medications, none of which helped, and as a side effect of one of them, triggered the blackouts, however, coming off the medication has not stopped the blackouts. He as had extensive testing at various hospitals, and after a tilt table test, was found to have vasovagal syncope, however the majority of blackouts are classed as functional, so have been referred to CAMHS. The problem is he blacks out when he gets anxious, so talking therapy, CBT and emdr, have not helped as he is usually unconscious for most of the sessions.
We were finally referred to GOSH, and Bath pain clinic, both have seen this before, however, he has been slightly better since the assessments, so GOSH have withdrawn their offer of a six week residential assessment, but not better enough for Bath to work with him. He has not been able to attend school since the blackouts started (health and safety risk) and has lost contact with all his friends. "Normal" youth clubs can't accept him (again, health and safety risk) and special youth clubs seem to be predominately for emotionally challenged children, so the activities for his age group 12 to 16 are things that an 8 year old would enjoy. Using any help like a wheelchair is a reminder to him of his difficulties, and cause more blackouts, but walking causes them too.
I really struggle to find things that he enjoys to motivate him to leave the house, and finally, with Tescos help, saved up enough points for a Merlin pass. I can hire a mobility scooter, and we went for the first time two weeks ago, and had a lovely time. Unfortunately, the pass we were given was not a Merlin pass, and the voucher I gave to them wasn't returned and although Tesco is looking into it, we can't go to any parks until its sorted, and if someone else has redeemed the voucher, we've lost it.
We have been on self Harm and suicide watch with him for the last month, and I'm exhausted, and I don't know what to do anymore. Everything I try seemingly goes wrong, makes things worse, or gets taken away, he is too scared to take pain medication anymore, and only takes fluoxitine (prozac), which doesn't seem to help.
I have no close friends of family to help, so I apologize if this post is not appropriate, I just want to make sure that he is getting the help he needs. The blackouts are classed as the biggest problem, however the pain he suffers with is classed as chronic so in my opinion, is a contributing factor, however, severs is a self limiting growth disorder and will stop when he stops growing so is classed as a temporary condition, however he has had it for 6 years and will probably have it for another 3 years at best. I can't leave him alone for more than half an hour, in fear he will hurt himself with a blackout, or self harm, and our one lifeline (Merlin pass) is now useless until its sorted. Thanks for letting me share. X
