Phonecalls

I've spoken to the geneticist again this week to ask a few more questions that I forgot to get answered during our appointment last week. I think I was a bit overwhelmed by it all and needed some time for it all to sink in. Turns out they want to study B, not because of his rare disorder, but because the researchers used very new technology to find out the results. I'm hoping they might write a paper on him. That would be very exciting.

Also this week have spoken to CAMHS a couple of times regarding B's last appointment about the possible autism diagnosis. I have never believed he has autism, the social communication disorder clinic said it's unlikely to be autism and now CAMHS do not think it's autism. So this new diagnosis has been brilliant to explain why B has autistic-like behaviour. It explains a lot. And explains why he has never been able to tick all the boxes. I feel excited.

EEG test letter

I get a letter this week with details of B's EEG appointment following his discharge from hospital. They reckon the test is not painful or unpleasant and will take about 45 minutes to perform. A had an ECG a while back so I sort of know what to expect. They are going to stick little pads of wires all over his head and monitor his brain behaviour. This is going to be a challenge as B won't sit still - ever. Even when he is asleep he fidgets. They can't knock him out like they did for the MRI because they need to have B awake to get the figures they need. I'm a bit nervous about this appointment. I don't know how it's going to go. B's daddy can't come with me because he is already leaving work to come to B's geneticist appointment later this week. These things all seem to happen at once. It's a busy week with appointments for all the children. B is also due to see CAMHS. Nanny offers to come with me for the appointment which is helpful although I've been informed from when I took A that only one person is allowed in the room at the time.

CAMHS Referral

I get a letter this week saying that B has had a referral to CAMHS which is the child and adolescent mental health service (who came up with this name I don't know).  They have 'discussed' the concerns and want to meet to make recommendations. Another waiting list. They are trying to get their waiting list down but still likely to be a wait of several months. This is the story of my life. They promise to write again when B's name comes to the top of the waiting list.