Omalizumab - fro a 5yr old?


My son is 5yrs old and has been in and out of hospital most of his life. Following a bad attack when he was 2, needing resucitation and time in intensive care, he was put on slo phylin as well as extensive inhalers, etc. His asthma is still not controlled despite all this and he regularly has courses of pred and time in hosp despite us having a nebuliser at home aswell.

He has recently had his IgE levels tested and they were found to be high. He has been referred to another consultant at birmingham children's hospital and the suggestion is they try Omalizumab. Everything I read about this drug says not for under 12's.

Does anyone have experience of it? I obviously want to do everything to help my son be well but am concerned that not much is known about this drug for the under 12's.

Any thoughts would be gratefuly recieved thankyou


5 Replies

  • I'm very sorry to hear about your son, what a worry for you. Re. Omalizumab I must admit I have no direct experience of it and I googled it to find out more. I didnt check all the references, but one of the more uptodate (Netdoctor, 1.2.10) said it is suitable for children 6+. An older reference I read said 12+.

    If I were you, I would ask the consultant about it and explain your concerns. Good luck and I hope things improve for you and your son.

  • NICE recently said it was unsuitable for under 11's, not because of the safety bit because it is apparently not cost effective. However consultants often follow their own rules!

    If you scroll down and look at recent blogs, there's one from a few weeks ago that talks about the decision


  • Im really sorry to hear your son is having a hard time.

    Im not positive but Im in the camp that it is ok for them to have this drug under 12's and it is the cost effective nature that is impeding the common use of it in this age catogory. But like I said Im not positive of this.

    I was just wondering what drugs your little man is taking? Ive tried to PM you but cant seem to get it to work. My little girl (aged 2) is on the purple inhaler (seretide) which is apparently not for the use of under 4's. She takes Montelukast too, along with antihists, antibiotics long term, Ventolin and needing monthly courses of Pred. I just wondered in your experience, what drug came next? The ones shes on arent obviously working due to the monthly need for Pred.

    Its sooo hard to witness our little ones going through this isnt it.

    I hope the Childrens Hospital can help your son.

  • I have difficult asthma and on a lot of medication. I had symbicort when it was not reccomended for my age group! I am on Omalizumab, I have just finished my 16 week trial and it has been decided that I carry on with it! I think I expected too much from it at first and my asthma did not get better over night but it really is helping me! I took lots of pred before but now I am managing to avoid it! Also the injections are not bad at all! It has really helped me!!

    Hope your son gets what he needs.

    Emma x

  • Hiya,

    The most recent prescribing information appears to have been updated recently and it states that it is indicated in children aged 6 and upwards. Here's a link if you think it might be useful?

    So sorry that you're lad's having such a terrible time of it. Hope he feels better soon. Lxx

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