Reporting back - it has quite literally been an unbelievable two days.
Went to GP. GP said ds2 was "wasted" and undernourished, he didn't think tongue tie was the issue (didn't look in mouth) and referred to Paed and wouldn't refer to have tongue tie divided, he wanted Paed to make call on that - waiting time 12 weeks. Said to just keep going and hope solids sorted him, developmental norms all okay etc.
Freaked out after I left. Decided to go to Mother and Baby Unit as had lost mobile and was afraid that I might lose it. Cried all the way in on the bus, arrived crying and saying someone needed to help me sort ds2 out quickly... what if there was something wrong etc... lots of support there, they were brilliant at calming me down, I rallied fairly quickly and just wanted to spring into action.
Said I wanted referral to lactation consultant and for someone to see about tongue tie. CPN said she would ring HV and GP to see what they thought as one had said solids/formula and GP had said solids no formula and I didn't feel either of them were particularly sure.
GP confirmed that it was routine referral - all milestones okay but significant drop. HV said she was very worried but hadn't wanted to tell me. She needed to see advice first... she felt she had neglected me and CPN said "well no there was a risk Thunks would disengage if you pushed it" (!!!!!!). They were worried it wasn't caught earlier. I had been busily having my anxieties challenged and was doing things like sitting there doing mindfulness exercises about how the issue wasn't that he wasn't thriving it was that I was WORRIED he wasn't thriving, the issue wasn't his weight gain, it was my WORRY about his weight gain and guess what? There was a real issue... man...
Anyway, there was a lot of discussion about what was the issue - I kept saying I wanted lac consultation - they said you need to do what the HV says and give formula, there is no room for discussion. I said no bother, I will, I have no issue with that. I also want lac consultation as I really want to keep bfing.... then they started saying was that my emotional need to bf vs what was right for ds2... erm, no, but yes, it is important to me and there's no need to stop.. said tongue tie thing - "no one else is worried about tongue tie but you" - yes, but I am a speech therapist - "but not here, this is your worry" etc etc. Round and round and round. "You will need support to go to Paediatrician and I think this time you need to take it and have someone go with you." I cried about my guilt that I was starving him and CPN said "you cannot afford to feel like this, you cannot afford to go there, you need to focus on now and that you are going to give him formula and trust that is right".
Eventually it came to this... "we need to be honest with you now. It's good you came to this realisation by yourself as if we don't take action now that's when we would have to involve outside agencies and that can be very uncomfortable".
I got very upset... understandably! Social services etc dancing in my mind, what was going on etc... I just sobbed and sobbed... the action plan agreed was that I wouldn't seek any further advice on his heath but accept formula was the best thing.
LUCKILY I had CBT booked anyway for afterwards - talked it all through with me. He made me write down everything I've done, how hard I've worked, all the evidence that I am fully engaged and making progress and he said it might be helpful to have a professionals meeting. We also covered whether my fears were rational or obsessional and the need for balance. I said I was very, very angry and felt it was a slap in the face and NHS arse covering and that they all needed to pull their fingers out and sort this out as they had dropped the ball and it WASN'T my responsibility to do any more than I have done. I've taken him to the GP, to the HV, I've not weighed him on advice as they said it was compulsive etc etc.... Worked it through and I decided I would take him to A and E to have an immediate Paed review. Explained to Paed in A and E I wasn't worried about growth but I was worried that it was being made out that this had happened because of me and my actions when I have never done anything to suggest I would avoid contact with health professionals or disengage and I wanted a speedy referral. Paed reg was fantastic and said - yeah, he seems fine, it's probably the breastfeeding but it is important not to leave it any longer. She advised solids but said she wasn't a Consultant Paed and I should discuss with my HV about referral to lac consultant.
I have since talked to CPN and HV and outlined why my concerns are rational and made an appointment with Milk Matters to have him seen privately by a lac consultant on Saturday. HV very supportive. CPN initially defensive but had to back down and admitted eventually she really did think my worry was anxiety and that his weight was not an issue and she didn't have any evidence I would disengage.
I feel I can breathe again. I honestly thought I was going nuts and that I was seeing him as skinny when he wasn't and that was OCD and I wasn't getting any better. Now I can take real action instead of just worrying and the relief is IMMENSE.