Alfie used to be seen at our local hospital in hastings. When we were there the problem was that they couldn't give intravenous salbutamol because it sends his heart so fast and they had no paed person who was comfortable venting a small child. They used to have to get an intensive care retreval team to collect him. We also had problems in that they were unwilling to provide alternate day pred or high dose flixotide for a toddle/small child. We moved to London. Now we are 2 mins from St. Georges where is consultant is based. She is very open to our requesting a 2nd opinion but she has done so well with him that we are reluctant to ask for him. She is a research dr in kids with asthma. Our problem is that she is not convinced that he has asthma because he responds best ot cf treatments - he doesn't have cf. She is unwilling to repeat his bronchocopy because he ended up in picu last time. Who is there at Brompton? would they have a lot more knowledge to draw upon? The level of care and success of it depends so much on which hospital.
Alfie's dr is probably going to put him back on low dose alternate day pred after this latest flare.
I'm so tired - its so long since I've had an entire nights sleep because he's flaring he's back in my bed again. We have home nebs as well as spacer but aren't encouraged to use the home neb for salbutamol because his potassium level drops so much. We use it more frequently with saline nebs - once he's had 2 salbutamol nebs he goes to the ward so they can monitor his potassium and heart .
Ok this is a bit self pitying. Sorry.