I'm looking for some advice for my daughter and wondering where the best tertiary centre is.
Here's a bit if background. My 16 year old daughter was diagnosed with severe allergic asthma last year having suffered from mild asthma most her life but nothing too bad. She started to go down hill and her best PEF was around 80-100. Initially they said it was due to non-compliance with medication and I fought to get further testing at one point refusing to leave the hospital until they did something. After further tests they realised that she IGE's of over 6000 and a massively raised oesinophil count despite oral oral pred. She's had over 18 hospital admissions since January and the only thing that has kept her reasonably controlled since May has been kenalog injections. However, we saw her professor last month who wants to wean her off the kenalog due to the length of time she's been on them and her age. This I undestand albeit reluctantly, but she is not a candidate for xolair as although the kenalog has worked on her oesinophil count it's done nothing for her IGE's which are still over 6000. My problem is that they are starting to reduce the kenalog, her PEF's are already starting to drop at regularly around 250 and she's needing her inhaler more and more throughout the day. Her local respiratory consultant who was brilliant has unfortunately left, they haven't found a replacement and she only sees the prof every 4 months. Nobody is monitoring as she's coming off this and we're both terrified as to what's going to happen. I had a slight melt down with a respiratory nurse a few days ago and said that I thought that this lack of monitoring and input from specialist staff was tantamount to negligence and I wanted a referral to a tertiary centre especially as noone has referred to her a allergy specialist or found out why she doesn't absorb or respond to oral pred despite my repeated requests.
So my question is where do I go? Geographically I'm slap bang in between London and Birmingham but just want my daughter to receive the best care having been pushed around and we as a family trying to cope with it all. She's only 16 and an absolute trooper who remains positive every step of the way but this is starting to affect her mentally as well and she literally has no life. I know there's no magic cure but I just want my baby to be listened to and helped as much as possible.
Any help would be very much appreciated.
Thank you in advance and sorry for my little rant and overly long post