Being Rare Is Never Black & White
Yesterday we took a day trip to Birmingham Children’s Hospital for our first appointment in Cardiology. Freddie’s Neurologist isn’t convinced that his suspected ‘absence seizures’ are neurological. As usual, nothing is straight forward for my little man. He has never presented anything in black and white and things always seem to need lengthy investigation. Although the physical symptoms look like absence seizures, the Neurologist isn’t convinced due to the frequency not being high enough in his book. This means we are now going down the Cardiology path. We need to rule out his heart being responsible.
I’m no doctor, but my gut instinct is that is it not his heart and that it is neurological. We would rather know for sure though than make an ‘educated’ guess and be wrong. His heart is physically in good condition which is excellent as he did have a hole in the heart before he was born, so that’s a positive. He did really well with the tests considering he has a few sensory aversions. Historically, if you had shown him a plate of jelly or a ball of play dough it was game over. Crying and shaking would ensue but having worked on this over the years he is in a better place. He tolerated the stickers and wires for the resting ECG which came out fine and he did really well with the jelly on the Echocardiogram (ultrasound) test. The next step is another non-invasive test where Freddie wears an ECG arrhythmia detection device which can be discreetly used to screen for infrequent and/or asymptomatic arrhythmias including those that occur during sleep for up to 32 days. “GOOD LUCK WITH THAT” was my response. Freddie is going to be pressing the buttons night and day. We do have to try though so that we can capture what the heart is doing when he has an absence so we will give it a go. If it doesn’t work, we will go to the next level.
Freddie was very excited to see his heart on the screen and insisted on taking a photo of it.
Ollie couldn’t come yesterday due to work commitments and as I hate driving in Birmingham, my Mum came with me for support and her husband drove us in which took the pressure off a bit. The only thing to do after a visit to BCH is to get a treat from the Boston Tea Party. We always take Freddie here if we have time. He chose a huge slab of chocolate brownie and I only managed to steal a tiny square. Made him happy though. I would like to pretend I was virtuous and just had a mineral water but it would be a lie. A huge Latte and a big piece of carrot cake went down nicely thank you very much.
This is the start of a whole new language and set of terminology that I need to learn and many more appointments to come. Will just try to ensure cake is the pay off after each visit.
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