which hospital

Hi,

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.

Margot

[Hidden]

Margot if you can get a referal to Brompton I would grab it. It doesnt mean you cant see your con at georges they could agree shared care. The Brompton have a difficult asthma protocol for kiddies and do a set of dianostic tests usully including ph study,bronchoscopy,x-rays,bloods etc. As a specialist chest hospital they have an extensive team of very experienced pead resp docs, you have nothing to lose by gaining a second opinion.

Good luck

J x

[Hidden]

Hi Margot & Alfi

Would definately support what Julie has said, being close to St georges is good and you will always want close back up but from my own experience of RBH and not having straight forward asthma that they have such a vast resp team to call upon.

I am now trying to get my daughter refered and have to go through local con first so it could be long road but I still believe well worth it. I have been recommended by My RBH con to ask for Prof Andy Bush who is peads - not sure if he is asthma side or cf side.

as you say Alfie doesn't have cf but some symptoms of they may well help and give you a protocol. You are welcom to pm me to ask more.

Julie is very experienced and knows her stuff

take care and good luck

Sarah

[Hidden]

Sean is under Prof Andy Bush, absolute top bloke. He is fantastic with kids, really listens to how they feel and takes their opionions on board. He really takes into consideration the impact of a sick child on the family as a whole and works with parents to reach a treatment plan that works for everybody. There is a difficult asthma team of docs and they are all very experienced and listen parent concerns. The pead resp nurse is Marcella, nothing is ever too much trouble for her and she also very supportive.As far as I know prof Bush is asthma con but all the cons at Rbh are very experienced and knowledgable about all resp probs.

I can hand on heart say I trust Prof bush 100% to do the right thing by Sean.

I'm going to shut up now as I look like im on some sort of commision for rbh lol.

When he was younger Sean was also on some cf meds as this helped, he doesnt have the disease but tests showed he carrys the gene.

Good luck

J x