So on friday we recieved a letter from our community Paediatrican. It was a write up from an appointment we had with him a few weeks ago. But this letter contained information that was never discussed with us. Seemingly from an eeg scan Freddie had a few months ago seems to suggest he either had a very rare brain disorder or was starved of oxygen at birth. I was horrified that we would recieve news like this through the post! Luckily we had an appointment with our Paediatrican on the Tuesday so we were going to have the chance to ask question and see what this meant….
So Tuesday arrives and i feel anxious all day waiting for this appointment. I was so worried about what they were going to say about his eeg scan and if it’s going to be awful news. Hospital appointments have taken over our lives lately. It seems we are constantly there and it takes so much out of you to make sure you are all ready on time and have got all your equipment with you.
When we went into our appointment our normal Paediatrician wasn’t there. Instead we had a doctor whom i had never seen before. The appointment was so pointless and a total waste of my time. The doctor had no idea about Freddie and it was so awkward talking to her. I asked about his eeg and seemingly he doesn’t have a brain disorder or was starved at oxygen at birth and if our comm paed had just checked his mri scan he would have realised that because the mri was clear he couldn’t have either of these but instead we were left to spend 4 days scared to death of what new illness our son had.
I am now at the stage where i don’t know where to turn. I feel so incredibly let down by all the doctors and am sick of the NHS. I understand we may never get a diagnosis but why put me and my family through unnecessary heart ache. He is my son and i’m sick of them treating him like just another patient. I’m at the stage where i want to tell them all where to go .
I’m fed up of constantly feeling like i’m banging my head against a brick wall. I can’t help but feel that if they don’t know whats wrong with Freddie then surely hes ok and it’s just my fault hes behind and i hate feeling like that. I’m sick of crying over a situation i feel i have no control over. All i want is whats best for Freddie and i don’t feel like the nhs are offering me anywhere near the quality of help and care he deserves.