Not sure how to proceed anymore

I have 4 year old twins and one of them has severe/difficult/brittle (every hospital has different names for it) asthma. She was diagnosed at 7 months old and she is unfortunately getting worse. She was admitted 14 times last year and that doesn't even begin to detail the number of times we have dealt with her medical issues at home with steroids and nebs. She is on seretide, salbutamol, ceterzine, singulair, azithromycin, pred, lansoperazole and has an epi-pen for her attacks as well. She was on slo-phyllin but the doctors discontinued it when it no longer worked for her. She started the azithromycin in later January. She only had a mild attack in February and then a big attack requiring admission with O2 in March. No problems in April and a huge attack requiring admission in mid May. Two admissions in June and was just discharged yesterday from another attack this month.

Consultant for difficult/severe asthma says there is nothing more medication wise we can do for her. She has tried everything and isn't a candidate for Xolair due to her age and low IGe levels (only 100). I don't know what to do anymore and I feel so helpless. My daughter is getting worse and our consultant called it a ""bad run of luck."" Ticked me off! The asthma nurse won't return my calls and our local hospital doesn't understand severe asthma in the slightest. They discharged her when I feel she was still too fragile.

I have asked my GP to refer me onto another hospital for a second opinion as I feel my daughter is getting shafted. The consultant vaguely accused me of enjoying my daughter being sick because I had researched different drug therapies to try. Research is what I used to do for a living before I had to quit to stay home and take care of her. I just want all of the information. I need it as our local hospital screws up so much.

Can anyone help? I don't know what to do and feel as though I am banging my head against a wall. My daughter is getting worse and the doctors just don't seem to care.

4 Replies

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  • Write to the patients representative ( used to be known as complaints officer ) At the hospitals asking if you can meet to discuss your concerns with daughter treatments. Or if you want to lodge a complaint. They have a time limit to response if it's a complaint. But can't remember exactly how long it is....... Usually this way guarantees a response ..

  • Hi sounds like you have been through hell. All I can say is fight, fight and fight, just don't give in, you are in the right, you know your child best and you are saving your daughters life every time you put your foot down. A mothers intuition is a powerful tool, do not under estimate it.If you are not happy, keep going back. I know it's exhausting, have been through years of it with Matty (10) but he's still here, his body has taken a battering (has scoliosis from uncontrolled asthma).Remember the following quote I used to help someone else going through the same.

    We shall fight them in the emergency room, corridors,consulting rooms and on the wards. We shall never surrender..!

    Good luck, don't be afraid to get a second opinion

    Kate x

  • Might be worth giving PALS a call (patient advice and liaison service).... Their web address is pals.nhs.uk or the first one found if you enter ""pals"" in a search engine... They are good at advocating for patients, and have local offices all over England tho unsure about scotland?!?!?!

  • Go ahead and push your GP to allow you a second opinion. Ask for a refereal to one of the specialist hospitals ie Royal brompton, heartlands or another asthma specialist one. You will have to travel but it will be worth it if they can sort your daughter out. When i was 6 my parents had to pay private to sort out my lichenschelrosis because the local hospital were not helping!

    Fight all the way, your daughter is precious to you and you and her deserve the best treatment!

    You will always know your daughter the best until she is old enough to describe how she feels and even then you will have to fight!

    Unfortualetly at the moment everyone with asthma is having to fight to get the treatment they deserve!

    Keep up the good work you sound like a fantastic mum!

    Plumie

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