My 6 year old son has brittle asthma, he has had several severe attacks over the past few weeks, one which needed high decency care. myself and my husband are at our wits end now, he is on the highest dose of his mediation using inhalers and oral medication, he now has to have an adult dose of steroids when he has a bad attack.
With his asthma being so brittle we are unable to take him out for days out, plan holidays etc, does anyone else have the same problem? we don't know any other children / families having to deal with a child with such severe asthma. can anyone suggest any other medication which has helped, he has ventolin (by the bucket load!), seretide and singular.
We would be so grateful for any help and advice anyone can give us. it is having a major effect on our family life now, as he has been like this for years, sadly he doesn't know any different and hospitals have been a part of his life since he was 6 weeks old.
Thank you x
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graciebelle
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Have you asked your consultants out a drug called xolair ? Although I' was a lot older when I had it have seenit work in young people
Hi Gracie,
I used to suffer very badly when I was younger and was switched to an older medication (sorry the name escapes me) which was a tablet and also given a very large diffuser to use with my inhalers as part of the challenge was the inhaler medication not actually getting deep enough into the lung to work.
Not sure if you have this but I would recommend speaking to a specialist about alternative meds and and methods, get your son's inhaler method checked as well and don't be afraid to seek another opinion from another GP.
Additionally I found that identifying the bigger triggers i.e. humidity, etc helped me to better manage it as you can then look to introduce these slowly and thus build up a resistance.
Lastly I absolutely advocate exercise as it helps strengthen the lungs and over the years its helped me go from severe to mild asthma.
Duncan
• in reply to
I agree with this so much. Even though exercise was (still is) a major trigger for me, my mother was absolutely determined that my condition should not hold me back when I was a child. This was despite the fact that for five years (between the age of 3 and 8.5) I was being treated for 'a tendency to bronchitis' and not asthma (not unusual in the 1960s); not surprisingly the medicine I was given for that had absolutely no effect all. But I did a music and movement class (which progressed to ballet) from 3 years of age, and I was also sent to what would now be called verse speaking/drama, but then was called 'elocution'. I wasn't a big fan of these classes I have to admit, but it was one of the best things I could have done. I can remember doing breathing exercises at the beginning of each class (the aim being to teach even us four/five year olds the breath control necessary for reciting poetry). As far as breath control was concerned, it was probably almost as good as learning a wind instrument. Which makes me wonder - Graciebelle, does you son like music? If he does, would it be possible for him to learn to play the recorder? That would help him to learn some breath control, and might give him a great deal of pleasure as well.
Hi, So sorry to hear about your Son but hoping things pick up for him soon, I am sure they will.
My Daughter is almost 6yrs old, has pretty bad Asthma, I am in the process of trying to set up a simple children's support group- somewhere they can meet monthly and mix with other children going through a similar thing as they are. Where are you based? I am on the south coast not far from Brighton... Take care x
we are based in manchester, i am looking to do a similar thing to set up a support group around here as there are no support groups in the north west xx
Has he had all the allergy tests? Is he on antihistamine? I have had allergic and infectious Asthma since I was about two months old, and am now 55 years old. Avoid using aerosol products, and damp dust. Leave a window open if you can. In my case keeping the air dry helps as house dust mites does not like dry air, but not too dry. Breathing exercises helped me a lot. Keep the perfumes down,. The ones used to perfume rooms are really bad for me. I am on double dose of ceterizine, as one a day does nothing for me. Keep the damp and condensation down as low as possible as this encourages mould which many people are allergic to. My sisters house is much damper than mine, and I can't bear to be in the kitchen when she is cooking because of the steam and heat. I hope some of the above helps. Make full use of your Asthma nurse, Asthma UK website, British Lung Foundation. As a child I remember many nights of wheezing. My father would read to me in bed to help take my mind off it. Audio books help now. These are just some ideas that help me. Fran xx.
Have you tried to change his diet? they say that bland food will help to keep the digestive system moisturised. You could also try, raw onions and garlic, ginger, tomatoes and grated carrots are good. Olive oil extra virgin (buy the expensive ones, italian or greek or spanish they are the best) . Lot of fruits and veggie and don't expose him to cold, keep him hot, well wrapped in winter clothes.
Thank you so much for replying to my post i appreciate it so so much.
He has had allergy test done and has come back with the all clear, we are back to see his consultant on Tuesday and i am asking for him to be re tested again just in case he has developed any allergies since last time we had them done.
We are based in manchester and finding any support groups etc is hard as there doesn't seem to be any around here. We are lucky we have friends and family who help out so much, but sadly many people don't understand how debilitating asthma can be, the amount of time i have heard ''it's only asthma'' drives me mad!!
His asthma always seems worse in May and September, however with the milder winter were having the damp air doesn't help at all. We have wooden floors throughout the house, no soft toys anywhere etc. We ask people who come round to avoid wearing strong perfume/ aftershave etc no air fresheners in the house either. We have no pets in the house and avoid taking him anywhere where anyone has dogs/ cats even though he has no allergy to them, we do this as a preventative measure.
His diet is 'fairly' healthy getting him to eat vegetables is a nightmare which to be honest is a struggle for any parent of young children
We have booked to go to Alton Towers tomorrow to see santa an his elves, its the 1st time on over 18 months that we have planned a day out, we had our 1st family holiday this year with all 4 of us, as previous years he just hasn't been well enough to go anywhere, so we have out fingers crossed the nebuliser charged ready to go.
Im hoping on Tuesday to ask to get his medication reviewed again and see what else he can take to help improve his condition, financially its taking its toll too, as i am having to take more and more unpaid time off work with him, my employers have been amazing with helping me but sadly after taking so much time off i now have to take unpaid leave when he is ill.
Also his behaviour changes after he has high doses of ventolin and red, so he becomes very aggressive now and hyper active, any advice on trying to keep him still to stop him wheezing would be so helpful. Asthma uk's website has been fantastic with advice and help.
Hi my son is 11 years old he is a severe brittle asthmatic, he is on stage 5 of the treatment ladder, has had 3 lifeThreatening attacks where’s he has went u responsive I’m at my wits end aswell he has had biological injections and been on a clinical trial and nothing is working hope they have found medication that works
I am a brittle asthmatic in my 40s. I live in the north west as well. I am on xolair (for allergies) but another drug is due out soon (which is more for infection triggers). I would ask specialists about seeing if he would be considered for either of these.
I hope he gets it manageable. It is difficult as a family to see and witness. I know as my partner and children have seen me go through attacks.
As he has this medical issue he can be also be fast tracked into Alton towers via disabled queue and also pay disabled rate/career rate if you have written documentation. We bands so you don't have to queue as much, they have a time restriction on. Any questions ask x
Do you claim DLA/PIP for him?
Also you could claim careers allowance for him, if you had to leave work depending on your circumstances. I would speak to welfare rights to see she if they can advise you.
Thank you so much, ill mention xolair on Tuesday when i see his consultant, i wasn't aware i could claim anything for him? i always thought he wouldn't be entitled to anything but ill look into it, financially its hard we have the heating on most of the time, cold air really triggers his breathing badly.
We have already purchased our tickets already
I don't know what we are entitled to but i am going to look into it, i just want him to lead a life where is manageable for him, as a parent its heartbreaking he had been in HDU quite a lot with it, and I'm always on edge that its going to happen, sadly that'd what brittle asthma is like, i hope your we'll at the moment thank you so much, i don't normally post on forums but after 5 1/2 years of it I'm at my wits end xx
Welfare rights are a good place to go. Asthma UK maybe able to advise as well. Contact a family is another organisation which maybe able to help out with advising you with a child. cafamily.org.uk/
You have two elements careers and mobility with dla I know it has changed under pip. Also if you care for him a lot you can claim careers allowance if you earn less than a certain amount a week.
As he is a child just a hospital letter stating condition and severity would mean you can access family places like Blackpool pleasure beach, Alton towers and pay disabled/careers rate. But it also saves you in queuing if that is an issue as they fast track you if letter states he tires/lung capacity reduced etc. Nowadays loads of places have disabled policies you can google them and ring up before hand as well.
I don't have children so not that familiar with what's available but wondered if your son is seen at a specialist centre for severe asthma already? If not, it would be worth looking into. As an adult with challenging asthma I found the general consultants couldn't really handle me, plus the specialist places have access to medications and tests other places don't , and a better understanding of how to handle asthma plus a contact when he is getting worse, for advice. I can ask a specialist nurse who has my notes for advice rather than having to deal with a GP I don't know, or wait till I get worse.
They might also have access to.support groups or ways for him and you to.meet other children and families in a similar situation. I think Asthma UK used to run camps for children with more severe asthma but not sure if they still do.
I think Wythenshawe hospital has an adult severe asthma service but unsure if also a child one. Obviously he may already be seen there in which case this won't be much help!
Btw on the allergy tests I have been told these can be tricky as you can still be negative even if you have allergies- also they do a standard panel so you could have a think and ask if they can test for less obvious ones. I generally have non allergic asthma but do have some odd reactions to.some things.
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