And to ask for help as to where to turn next?!
My son had meningitis at 4 months old and I felt I was fobbed off because I was a young mum.. so I am prepared to be told I'm acting like a hypochondriac now but most of all I just want some advice as to where to go! This is likely to be a long post but please stick with me.
Backstory that goes with that: I was told at no less than 6 GP/Walk-in appointments over the course of a week that it was just a viral infection and that I was over-reacting until one day he suddenly went all floppy and I rushed him to hospital. They said had it been any later, he would likely have died. Luckily he didnt have much lasting damage but the infection did destroy some of his ear drum and ear canal in both ears. Due to this his hearing was terrible until they finally gave him the surgery he needed a year ago even though I told them over the 3 years that his hearing was causing many many problems and it needed to be looked into more. This has severely impacted his speech and social development.
The grommets did help for a few months and he came on leaps and bounds, but since November we have been dealing with a new problem - a recurring painful, smelly, gunky ear infection in both ears. I have heard this is common in children with grommets but nobody is offering any real solution for us. It comes back every 2-3 weeks. I have made a list of all the appointments he has had since I took him to the walk in centre for the first time - 4 GP appointments, 3 ENT appointments - and medications - 5 courses of 2 different antibiotics (which are clearly not working?). He had swabs sent to the lab but the doctors have said he can't have the only antibiotic that will work on this bug due to his grommets.. erm, okay, so what do you expect us to do? Just accept it? His nursery have even said he cannot keep going if it continues and that when he is due to start school in september he won't be able to go! I've explained it to the GP and ENT that yes, it goes for about a week after using the antibiotics, but comes back as soon as the course is over. I've also taken photos and videos of the infection when it's here. His last appointment was with ENT last week when they weren't leaking and the doctor looked into his ears and said there was some inflammation but no gunk so advised me to 'just keep them clean and dry' and sent for a review appointment - at the end of August! On Wednesday the gunk started again. Tonight they are bright red and hot to touch and he screams when I try to clean the gunk off. He's been crying all night long and I feel hopeless. What more can I do? Is there anywhere I can 'appeal' to as such?
I will try and get an emergency appointment via 111 tomorrow when I have the car and GP first thing on Monday but I feel these channels really aren't interested in addressing the problem as they just keep repeating the 'oh I can't prescribe anything further I will refer you back to ENT' which means we wait weeks for an appointment for them to either 1) prescribe the same antibiotic again or 2) say they can't see anything and he's fine. He's NOT fine!
So as not to dripfeed, I also had brain surgery to remove a tumor at the end of March. I'm close to okay now, but stress and lack of sleep does nothing for my recovery 