9 yr old boy. Still on home oxygen and nebulisers....anyone else in the same situation?

Hiya, i don't wish this to sound like i'm moaning, however my son has brittle asthma. Obviously he is poorly pretty much all the time. He is really uncontrolled and can't suddenly go blue and stop breathing on me. He has been in ITU and HDU more times than i can remember, he has had pneoumonia at least 9 times and bronchitis too lots.

He is now 9 and has been like this since birth, he has been on home oxygen, which has slowly been increasing (now 3ltrs), 2-3 hourly nebulisers during the day and night, various anti histamine's, montelukast, flixotide, servevent, prednisalone tablets, Phsyio and various suppliments, because he is also underweight to having such a fast heart rate. I have met a lot of younger kids this ill, but i am pleased to say i have known all but one to grow up of their illness. My lad is still suffering, and i for one could do with someone to bounce things off of. He is fine in himself a typical 9 yr old, only intrested in his dslite, xbox etc etc, But obviously our lives are always focused on him, even going shopping can be a total pain in the ...... you get the idea!!!

Anyway i just am here to say hi, and to see if anyone else is in a simular postion.

It looks like we will be heading down the sub cut route soon, not looking foward to that!

Thanks for reading!! Any replies at all would be great! x

2 Replies

  • hi my son has chronic severe asthma and has had trouble with his asthma, since he was born he is now 12,and has been in and out of hospital since he was born, and still really suffers he is on the sub-cut bricanyl aswell as methotrexate, seretide,slo-phyllin,preds,filxonase,anti histamine and ventolin,septrin,calichews,and folic acid he has now developed lymphopenia due to his preds and methotrexate he has 16 mls throu a grasby pump and has been on this for 3 years as a messure to reduce his pred but it has been a rocky road but we are down to 10mg a day but for how long i do not know........... owen was on oxygen when he was in hospital when he was younger and still from time to time now he only has nebs in hospital as they dont recommend them for home use where i live as they say tht if he needs nebs he needs to be in hos if u want to speak then pm me and ill chat to u and we can share our experinces if u wanna yours ruth

  • Thanks hun, its great (does that sound bad!?) to find others in the same or simular postions as us. I will pm you later...right now got another hospital appoitment xx

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