What comes next for little ones?

I am feeling very anxious right now. My 4 year old daughter had a bronchial lavage and a bronchoscopy this past week. This is her second one. According to our consultant's at Addenbrookes and Prof Bush from the RBH, she is on the maximum doses of all of her medications and she is nowhere near under control. She is on 10mg ceterizine, 4mg singulair, 15mg lansoperazole, azithromycin (three times per week for the anti-inflammatory properties), Seretide 250 (4 puffs a day), salbutamol nebs and inhaler. She also takes 40mg of steroids very regularly. They also repeated her pH study as well.

What comes next for a little one? Can they do subcutaneous meds for a little one? She is still needing her blue inhaler every four hours, around the clock. She is desat'ing regularly. I am so lost as to what could possibly come next. Xolair has been ruled out due to NHS guidelines. She is admitted to hospital at least every 4-6 weeks for several days at a time. Any guidance would be great.

6 Replies

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  • I am so so sorry to hear about your 4yr old suffering so much.

    Which of the medicines you mention is an asthma preventer?

  • This is a really terrible situation you are in, no parent should ever have to watch their child struggle to breathe and no child should have to miss out on their childhood like this. I'm going to help you as best I can but I am only an asthma sufferer, I am not a doctor and I have no experience of peadiatrics.

    I dont know the answer to your question about subcut, but I suspect that for children her age, it woudn't be possible. I think bricanyl syrup is used in children though.

    There may be some other treatments that she could try, or at least would be worth talking to her cons about. Ipratropium bromide is another kind of reliever which can be used regularly as well as her salbutamol. Theophylline I think is used in children but it has quite a lot of side effects and finally Sodium cromoglicate which is a non-steroid anti inflamitory drug which is rarely used now but is still available.

    I know at the moment it seems like you wont ever get this in control, but you will. She is in right right place at the RBH and if you have any more questions please ask away here or ring one of asthma UK's nurses (the number is at the top in the red box)

    Lorna

  • This is a really terrible situation you are in, no parent should ever have to watch their child struggle to breathe and no child should have to miss out on their childhood like this. I'm going to help you as best I can but I am only an asthma sufferer, I am not a doctor and I have no experience of peadiatrics.

    I dont know the answer to your question about subcut, but I suspect that for children her age, it woudn't be possible. I think bricanyl syrup is used in children though.

    There may be some other treatments that she could try, or at least would be worth talking to her cons about. Ipratropium bromide is another kind of reliever which can be used regularly as well as her salbutamol. Theophylline I think is used in children but it has quite a lot of side effects and finally Sodium cromoglicate which is a non-steroid anti inflamitory drug which is rarely used now but is still available.

    Has she ever tried any different preventers? Seretide is a combination of a steroid and a long acting reliver. Symbicort is another, I'm not sure whether it would be ok for kids her age. I tried symbicort first and It really didn't work well at all for me but now I'm on seretide and its great. I think it just depends how our bodies react.

    This last point may seem a little obvious and I'm sure you've through of all this already, but have you got any furry pets that she could be allergic to? Do you freeze her cuddly toys and wash them on high heat to kill dust mites? I think AUK have a section on this website all about making your house more asthma friendly

    I know at the moment it seems like you wont ever get this in control, but you will. She is in right right place at the RBH and if you have any more questions please ask away here or ring one of asthma UK's nurses (the number is at the top in the red box)

    Lorna

  • Thank you both. The Seretide is her preventer. She started out on the 125mg dose (the same as her twin sister) but it didn't work so they moved her up to the 250mg. She has already been on theophylline for a year but it did nothing for her. I will ask about symbicort.

    She has no stuffed animals, we have removed all carpets and soft furnishings from the house and she still gets ill. The doctors at Peterborough District Hospital told us they thought it was our Victorian house being so old so we moved and bought a new house. This is just getting insane.

    She has only seen Prof Bush from RBH once when he did a clinic at Addenbrookes in April. He ordered a tonne of tests and these were done last week. They tried to do them in May but she had an attack and was almost left to die on the ward since the nurses never read her file and thought she was only there for a sleep study and a bronchoscopy.

    I am so stressed. She is just so ill and we are constantly in hospital. I feel so helpless and I cannot help her.

  • Hi I really do know how you feel.we have been through the same for the last 10 years.Matty was on 4 puffs of 250 twice daily when he was 5 and still didn't hold his asthma off.Matty has no allergies that we know of.His is caused by emotions,exercise and colds, took 9 years to diagnose properly.They are already stressing them about sats exams and now he's just come out of hospital, couldn't cope with the pressure.he's only 10.His asthma does not follow the usual pattern so he was always ignnored at hospital too, he has never wheezed, although i was told there was one this time but lungs are inflamed too.He has only managed about 5 days at school since september and this is stressing him too.

    I really hope things improve, on the plus side, new meds come out all the time and we have found his asthma care has improved so much over the last 2 years.

    take care from another tired and stressed mum

    Kate

  • It must be worse for children, have both you mums phoned the asthma uk free phone number?

    their asthma nurses helped me a lot.

    I keep thinking about your little ones

    I hope you both find a solution soon

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