When DD2 was born, I just knew that she had a condition/syndrome that I do, it is very rare and most medical professionals that I have seen personally and for DD2 do not know of this and have to consult medical books or google. This syndrome has no specific treatment as such, just treating any issues as they arise. (I don't want to name the syndrome as it will be outing)
I asked our GP to refer her to the relevant medical professionals; Cardiologist, Ophthalmologist and Audiologist, as these are the main issues I have so wanted DD2 checked by them.The GP refused saying I am over reacting and don't know what I am talking about and it's my PND making me think this. I also asked the health visitor if she could refer DD2 but she was about as much use as a chocolate fire guard anyway so I pretty much already knew I would get nowhere with her.
DH and I discussed it and decided to move GP surgery to another one to see if we could get it that way. The GP there was amazing, saw how upset I was becoming, more so because certain medical issues caused by this syndrome are degenerative and could result in going blind or sight impaired and deaf or hearing impaired.
We got the referrals, DD has several congenital heart defects, Glaucoma and is hearing impaired. I made a complaint and sent the doctor a letter telling her that I was right and she was wrong and how atrocious of her to use a mothers mental health against her when all that mother is trying to do is advocate for her child and that the Dr should be absolutely ashamed of herself. Unsurprisingly I heard nothing back.
DD has had 8 operations so far on her eyes and 4 other general anaesthetics to perform diagnostics as DD was so young, 2 operations on her hips as the syndrome can also cause unstable bone structures. She has operations in future on her hips, eyes, ears and heart. She wears bilateral hearing aids, has eye drops on top of the surgical interventions on her eyes and has pins holding her femoral head to her femur, and was in a wheelchair for 18 months, she still, at times, needs to use crutches to support her. The amount of appointments and medications were so great at one point we had to keep track on a spreadsheet.
I fucking knew I was right.
DD2 is an amazingly resilient child who just brushes it all off, like water off a ducks back to her. After all her time off school, totalling almost 2 years, due to her operations and other medical issues then covid she works her arse off and is in top set at secondary school for most of her subjects. That GP will always be an egotistical arse hole.