Son has severe brittle asthma

[Sarah0291]

Hi my son is 11 years old and has severe allergic persistent brittle asthma, he is on step 5 of the treatment ladder, he has had biological treatments and been on a clinical trial and nothing is working, he is currently on 10mg of oral steroids and he also gets nebulised steroids plus the rest of his inhalers and tablets, he has multiple hospital admissions with the most recent being 30.12.17 where he had actually turned blue and unconscious while having oxygen on, the specialist has said he doesn’t know what to do and that he has never came across this before, I’m at my wits end now been going on for 11 years and no further as to getting him stable or giving him a quality of life, he isn’t able to go out with friends or go in the cold weather as it takes it out him anyone any sugggeations

[Yashi79]

Hi Sarah,

I'm really sorry this for your son's and you situation. My daughter also has severe asthma and there were periods of time when nothing seemed to help and we basically lived in hospital. But I there can be hope, my daughter is now almost 22, it got a lot better after puberty. Sending you lots of hugs.

[Sarah0291 in reply to Yashi79]

It’s so hard we basically spend our life’s in hospital he had 7 admissions in December

[8405loi in reply to Sarah0291]

I'm sorry to hear about your son it must be dreadful for you all. Sending lots of calm & hope your way 🙂

[Hidden]

I'm sorry to hear of your son's problems, I have suffered from allergy triggered asthma all my life (now aged 64). There have been many periods in my life where I have thought I would never be well and it is horrible when nothing seems to work. Ten days ago I started using a Himalayan salt inhaler (as well as my regular seretide & salbutalmol) I am having a 20 minute session a day and I felt the benefit after my first use and so far (still early days yet!) it does really seem to help. I am not medically qualified so can't advise on any therapy or treatment but just want to make you aware that it has helped me. I hope your son gets some relief soon.

[Sarah0291 in reply to Hidden]

He gets nebulised budesonide

[angievere]

Sorry to hear this. My son was very ill with brittle asthma but Xolair injections turned things around. Ask the consultant if they have considered Xolair? My son is now 20, still on maximum medication plus the injections, but lives a full life. Good luck and I hope things improve for your son.

[Sarah0291 in reply to angievere]

He has tried it and it didn’t work he has had 2 different injections none made any difference

[angievere in reply to Sarah0291]

Sorry to hear that. My son’s asthma worsened when he went to secondary school, a whole new germ pool as the consultant said. Colds and rhinitis aggravated his asthma. I gave him extra vitamins and Magnesium to try to boost his immune system, also essential oils (Tea Tree and Lavender). It may be worth thinking about home schooling if that is a possibility, ie to keep your son away from germ pools.

Avamys helped the rhinitis after he saw an ENT consultant, also daily nasal rinses. But Xolair turned things round.

I know what you are going through. I hope something turns up. Xx

[Sarah0291 in reply to angievere]

He has had xolair treatment and it didn’t work either and he tried another injection which didn’t work his consultant has also said he actually doesn’t know what to do

[Hidden]

Hi Sarah0291

Sorry to hear your son has been hospitalised so many times recently, it sounds like you're going through a tough time.

Just to mention our clinical lead Dr Andy Whittamore's advice on complementary therapies can be found here: bit.ly/2rhq4NL

Do give our Asthma UK specialist nurse team a call on 0300 222 5800 (M-F, 9-5) they can have a chat with you and provide support and reassurance.

Take care,

Dita