here goes worth a try.
When my Ds was going through all this I rang Bupa and asked if they cover babies they said yes, I said even who is already diagnosed with reflux and has had bonchulitous they still said yes, I asked how much it would cost to cover my DS as at that time we hadn't had any tests and they said £20 a month. Now I don't know your financial cir!@!stances but it was the best £20 a month we have ever spent.
A) we got our son to see a specialist pead that week, tests and results the next week.
b) our doctors woke up and listened as soon as I mention the specialists name
c) the specialist had more time to listen to me and the symptoms, he trusted me, he even dismissed the DISGUSTING letter the local hospital had written which I have kept as proof of our battle, he said "forget about this and waived it in my face, he said they haven't got the time or resources to know what is wrong, but I have, start at the beggining & what a relief!",
d) he left no stone unturned (we even had our DS tested for latex allergy),
e) we have had a stream of true proffessionals helping us on the specialists team that he had worked with for years and had hand picked himself, and they have been so, so supportive at one point our dietician rang us at 8pm to see how our DS was doing after a day of me ringing her about 5 times begging her to find a way to make our DS drink so we could take the tube out, they never stopped offering us hope.
And today things are a different story for us but that £20, WOW it was just so worth it. i think in total after one year our bill with buppa has been about £2000 that they paid for and we've paid £240. It may be more but it's worth a call if you haven't already tried.
Let me know how you get on.
Hope your not too low today, HUGS again as I said from 1 mum to another who's been through this, you really are amazing to be fighting her corner and as someone said to me once when I was too low noone else can fight thier corner you must be strong for them, your time to break down when it's all over will come, but for now take every ounce of love you have for her, and turn it into strength mental and physical, and as nature intended, protect her with all you instinct gives you, if you want answers now you fight for them now. If your partner/hubby has to be out getting food to go on the table that's what men were ment to do the HUNTER this is what mother nature intended for us mums, I think now only the lucky in a funny way get to know what true nuturing,protecting, caring and loving & ultimately bonding is really about.