Good to read your updates! Ahna, I feel DD may know it’s Wednesday! And great she can articulate it. DS would know but couldn’t say it. He could select it from a list.
Dimples keep positive! We heard all this about DS current school but they offered him a place with no issues. So you just don’t know!
Open, fab about school!
Its been a bad day here, I’m so ground down. Spent most of the morning in floods of tears. Not sure what to do or indeed if I can do anything, it’s a long snd weird story but I’ll try and summarise.
I mentioned the London private neurologist we saw last year who mentioned genetics. Well we saw her again in Feb for a follow up. She seemed to have changed her tune about that (said not necessary, another story) but had a proposal for DS to be prescribed a new to the market med which she really felt could help ‘speech and cognition.’ She was all for it, said it was def worth trying and wrote a report confirming. I was soooo bloody excited, no one has ever said anything like this before. Before it could be prescribed DS had to have various tests (bloods, all to be sorted by me), then I would get a call from her colleague asking a few admin type questions. Provided the bloods were ok we could start. Really really exciting.
Anyway I’ve absolutely killed myself to get these tests done for him. No one wanted to do as the request came from a private consultant. I’ve begged and pleaded the GP, been passed from pillar to post, spoken to every lab and hospital in the area, even had to take time off because it has been a full time job. Then of course had to haul DS for blood tests etc. it’s been awful. Then bloods had to be repeated because the hospital hadn’t done it right. BUT got it all done, tests fine, so I stupidly excitedly waited for the colleague (not a dr I would add) to ring me to take the admin details. It’s taken me WEEKS. But on the back of what she said and wrote I’ve been super hopeful.
So she rang yesterday (the colleague) and her first point was that she didn’t think this med was appropriate for DS (for reasons I won’t go into.) I had raised this specifically with the consultant at the outset and had been reassured 100 pc it was appropriate. On that basis the colleague said she wasn’t going to take the info. I was fairly indignant and said yes but the consultant has recommended. She said she would speak to the consultant. I fully expected an apologetic response from consultants PA about this woman but what did I get this morning? An email from the consultants PA saying that on reflection, the colleague was right. And so no, DS wasn’t suitable for trying this.
i am so upset. Not about the money (££££ to the consultant), or even the inconvenience to me, but rather that I’ve dragged poor DS through all this for nothing. And that I was stupid enough to think that finally someone may be able to help him.
emailed the consultants PA back saying I was furious and wanted an urgent call back from the consultant. Surprise surprise I haven’t got one. So it looks like that’s that.