Newbie, need some support!

[Lauraloo22]

Hi, hoping people can relate to my story!

My daughter is 13 years old and has had Cronic asthma all her life, she has an emergency care plan for when she goes to hospital as she can deteriorate quite fast.

Up until this year her asthma has been really well controlled and she races karts, goes to the gym, plays football etc.

In January this year she got scheduled infection which left her in a lot of pain, the doctors said it was muscular for ages and sent her home but then she had an asthma attack which was so severe she ended up in intensive care with Pluracy and fluid on her lungs. Following intravenous antibiotics and steroids we were allowed home 2 weeks later. We were home for 2 weeks before an asthma attack put her back in intensive care again. That was February this year and since then we have had 4 more hospital admissions with the longest being 3 weeks.

The issue seems to be the fluid on her lung that builds up then causes a low lung function andan asthma attack. The hospital say she needs a CT scan but want to wait till her chest is clear before doing it but her chest doesn't seem to clear. Her last hospital admission was 2 weeks ago with 40% lung function, they gave her a load of steroids and antibiotics and sent her home after a few days. We are 5 days at home and she is again coughing up phlegm so and looking pale we are taking her back tomorrow. This has been going on since the beginning of the year and we are no further forward and don't have any answers. I just don't know what to do but we can't go on like this. We have missed almost 5 months of school and she any do sports or racing or go out with her friends, we are meant to be going on holiday in June but not sure that will happen.

At the moment I am thinking of referring her to try and get a second opinion.

[risabel59]

Oh dear how worrying for both you and your daughter. As she has been so seriously unwell, I would try and get her a referral to a Tertiary centre. Your GP should be helpful. Heartlands, Birmingham, Glenfields Leicester and Royal Brompton Hospital London. All have brilliant doctors, plus the mixed discipline practice that a good evaluation needs

I would also ring Asthma UK helpline as they can offer extremely good advice about the best thing to do.

As she has been so unwell, it may take quite a long time to recover. But I hope things improve soon.

R

[Triggerina]

I agree with Risabel as regards going forward. . Just adding support.

I have always had asthma ( now 61) and was worse during my teenage years. Much improved by age 16/17 and am now fine and well controlled.

I am sure that with more meds around than45 years ago when I was like this ,this can be sorted with a second opinion /advice as Risabel suggests.

Let us know how you get on. X

[Lauraloo22 in reply to Triggerina]

Thank you, since we posted this we are back in intensive care, it goes on.

I have asked for a referral to Newcastle hospital who have a respiratory centre and experts there so hopefully will get a second opinion.

It's so hard trying to juggle work and hospital and life in general at the moment, feeling so fed up x

[Triggerina]

I am so sorry to hear that.

A respiratory centre sounds a good move to me. Do you mean Newcastle u Tyne resp. centre? Although I was bad enough in my teens ,I never needed intensive care so have nothing to help you with there.

I hope that things will have improved by tomorrow. Thinking of you and your daughter. X

[dawn3y]

Hi Laura. My daughter is 28 now but as a child was constantly in hospital, (though not in intensive care) with asthma, infections, constant glue ear, sinus and ear problems, coughing up rubbish etc. She could do little sports and exercise because would be so breathless. After years of this, at 18, she was diagnosed with bronchiectasis, which was why the asthma had been so difficult to control. But I suspect she'd had this for a long time before diagnosis. You absolutely need to be seen by a respiratory specialist to get to the bottom of why this is happening. With my daughter, they just kept treating the symptoms, which were put down to the severe asthma and allergies, but they didn't look deeper for years, the asthma symptoms masked the bronchiectasis. So it wasn't until she went for a ct scan that this was diagnosed. I'm not for one second suggesting your daughter has bronchiectasis, but further investigations need to be undertaken by a specialist. Insist on referral and don't let them fob you off. I remember how very gruelling the constant hospital stays were, and normal life is constantly interrupted. Talk to your manager, hopefully they'll be understanding. Keep us posted. Good luck x

[v2tena]

I don't want to go on about me but I had all these symptoms and main worry was any irreversible damage for lungs when I got down to 40%. I suspected that my asthma was being driven by allergies and had numerous tests which concluded this. I also have aspergillosis. There is an underlying recurring infection so am now on a long term maintenance antibiotic. She is so young poor girl. Please check the allergy route - it is a long journey and can be very traumatic (I had to give up my dog) but she has a whole life in front of her. Keep us posted. Addenbrookes has been a turning point for me at 56. Good luck to your girl and do tell her that despite all, a positive spirit will get you further.