Where to turn?

Published December 13, 2011 by swanfreddie

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.


2 comments on “Where to turn?

  • Hey. The road towards a diagnosis can be a very long and very exhausting one. The search for answers will reach a natural pause, and then you will naturally let go of most of the anxiety surrounding not knowing. I go through waves, when we get new bits of information, I am in a frenzy of research, trying to figure it all out, staying up late at night reading medical research studies and trying to find a fit. But I just couldn’t have kept that going for 5 years straight. As the appointments stretched out to 9 months inbetween as they were just running out of things to test, I had to just let go for a bit, and I managed to all but forget about it adn just get on with the reality for a while.

    We’re right back in the thick of it now with all three children seeing prof Muntoni, and if his team don’t know, well, no one will! What does help is if you ahve in mind what tests might be useful, sometimes suggesting things are what get them done. The only hint we have about what is wrong with the kids is down to a test that I asked for. I’m very, very lucky that Dominic is under a brilliant neuromuscular consultant at GOSH who listens to me.

    SWAN is a great resource, and there are lots of people going through the same thing. I just wish there was a database of symptoms so you could cross reference with others and find out what testing another child has had etc. That said, there are a few of us who are very proactive in our child’s treatment and would happily go through, from our experience, what might be a natural next step. It would be good to outline his conditions and testing so far first though.

    Much love to you, this feeling won’t last I promise, just keep putting one foot in front of the other and then you’ll just know what your next step is x

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