My beautiful little boy is almost 23 months. He’s had significant health issues from birth but had a new diagnosis in May that required further testing as they suspect a genetic condition affecting the brain.
Got consultant appointments tomorrow and Friday and will be getting results. Could be great news, could be pretty bad news. How do I shut off my brain so I can get some sleep and be functional tomorrow? I’m getting myself into such a state.
Thank you. I’ve been trying to hold it together for the last three months, not especially successfully, but the closer it’s got to these appointments the more anxious I get.
He had a big regression five months ago, could be related to the stuff we’ll find out about tomorrow, could be something like ASD and we are seeing someone about that in a few weeks. It’s all just really overwhelming.
I find that going to bed with my ipad and earphones and watching something good humoured but not too taxing like QI or The Last Leg works quite well - stops me lying awake and worrying about my kids every night!
The only thing that helped me is being very matter of fact and thinking that the situation is what it is. Today and tomorrow make no difference at all- but the change will be my knowledge of it, whatever it is. And whatever it is you can and will cope, one step at a time. And distraction is good. Be kind to yourself today and wishing you all the best.
Thanks everyone. They haven’t done any genetic testing, just various hormone levels I think, but the MRI results should show if it’s what they think it is. I can imagine the wait for genetic tests are awful.
We saw the paediatrician on Thursday and she said the MRI confirmed the eye diagnosis but was otherwise clear. So we were really relieved.
Then we saw the ophthalmologist yesterday who told us that there were some small patches of scarring in his brain, but he was very dismissive and said it probably wasn’t an issue. Took me a while to realise he was saying that DS has some brain damage. Obviously it’s not his area of expertise but we aren’t under a neurologist so I’m really not sure how much of a factor it is in his other issues.
We are seeing the developmental paediatrician in a couple of weeks so I will be asking them about it, and if they’re not sure will ask to see a neurologist as I think we need to understand exactly what they’ve found.