gutted this is as good as it gets

i have come home from an appointment with my consultant totally gutted today my 6 yr old can no longer enjoy alot of activities that other children do because they cant get her asthma under control even on the high meds she is on and they have now told me this is as good as it gets and that we just have to calm down and take things easy[whats this sit in front the tv allday?] i cant believe it she is getting alot of side effects from the drugs shes taken but they said that there is 2 choices stop her meds and let her asthma get alot worse or let her put up with the side effects and still not be able to do the things she likes to do its just not fair i just cant believe they can give up so soon there must be other things to try or other meds without the side effects.is anyone else finding the same?

[yaf_user681_34383]

hmm don't know which hospital your daughter is seen at, but is it a specialist centre for children's respiratory medcine? They tend to be in larger citys such as the brompton in London. Your daughter is on a fair few medcines but there certainly are other drugs available. I'm not a parent yet but your consultants opinion seems a little harsh. Maybe ask your gp for a second opinion from another hospital which everyone is entitled too one which specialises in paediatric asthma called tertiary centres. I think the brompton is your neares but I may be wrong. Good look with your daughter you have every right to worried about her. All the best sadwheezer

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hey,

Just wanted to say that I don't think you should just accept what your consultant said, as theres still other treatments avalible for your daughter's asthma. What treatments has she tried so far? and has your daughter had allergy tests?

I'd definetly try and get her refered to a specialist centre as they tend to be fab! The other thing you could do is ring the asthma UK nurses on here and see what advice they can give you.

Have you tried keeping a diary of what she's eatern and and any other triggers that shes come into contact with and what her symptoms are? This might also help to see if somethings triggering the migranes?

Best of luck, your obviously a fab Mum! ally x

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marie

Hi Marie

I can totally sympathise with you and feel for your daughters asthma and your family.

Would you consider trying the buteyko breathing technique? I would only recommend to learn this from an expert but may provide some initial relief and longer term hope that there is a way out of this. I know of two brothers, 7y and 4y who have been hospitalised 31 times already for asthma in their short lives who are as of recently trying it and the parents are finding it beneficial but it is early days yet.

This is too risky for you to try from a book or dvd at home. Find the best instructor you can, travel to see them if necessary, talk to them about it (and if they have already helped someone as severe as your daughter, ask to speak to their patients as references) and then talk to your consultant to decide on your strategy. Personally, I believe that this could well benefit your daughter, but obviously this is sight-unseen, internet based diagnosis.

I learned this technique 6 years ago and wish I had learned it 30 more years ago but I was not as severe as your daughter.

I do not wish to cause you or anyone else here any offence by my suggestion. From my own experience, i believe that this would be beneficial to enter the discussion phase with a buteyko expert at least.

good luck.

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hi thanku for your messages i will look into that breathing technique, i do also keep a diary of everything and i saw my doctor as well yesterday who agrees with the consultant and says that im a brilliant mum but need to accept she has a condition that you can not always control and not take it as a failure and be glad of the improvement so far.i have lost count of the medicines we have tried but currently on a calcium supplement for her dairy intollerence,seretide 250[not recommended for under 12s],singulair,salbutamol,prednisilone,amoxycillan,piriton,pizotifen,and endless amounts of creams for her eczema.thanku all for your support

marie

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anecdotally this also can help excema.

You could try and get her to breathe through her nose if she can (unless this causes her any discomfort). If she can manage and you can suggest to her to keep her mouth closed when watching tv or playing on her own it may help. I do this with my own two boys, 4, and nearly 6, i give them gentle reminders to mind their breathing.

I agree 100% with your that its no reflection on your obviously fabulous and caring parenting skills. Keep your spirits up as you are doing and help your daughter to keep up hers too.

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My younger daughter was slow to gain weight, horribly sick and wet after every milk feed. The hospital maintained no such thing as a milk allergy. That either she was chewing her fingers or I wasn't winding her properly. At each hospital visit, they said there was nothing to be done. 1980 - allergies were a fairly crackpot idea to the NHS.

My dear SIL suggested a paediatrician who'd worked within the NHS but now ran a homeopathy practice. Milk allergies immediately picked up and soya milk proposed plus keeping away from dairy till she was past age 2.

Almost 30 years on, glad I had the chance to seek a second opinion - had it turned out the chap agreed with the hospital, well, at least I'd had tried.

I can understand, marie, where you are at the moment. If as sadwheezer suggests, there is a centre that deals with childrens asthma, I'd certainly give them a go. The answer might be the same as your own hospital's, but at least you will know you have tried.

Hugs,

Moira xx

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You may well have done this already but in case not: have you thought of speaking to or emailing the Asthma UK adviceline? The nurses there are very experienced, and sympathetic, and might be able to advise about seeking second opinions etc. I have recently encouraged a couple of people to contact them & they found it very useful.

All the best,

Claire

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Ask your GP to refer to s childrens specialist difficult asthma centre, RBH have one I think Hearlands do, not sure about Withensure in Manchester or the new centre in Leeds. Looking at your profile there are other things that can be tried. Don't give up.

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Please ask for a 2nd opinion

Don't accept 'this is as good as it gets'...that is just not acceptable. My little boy Alfie, also 6, has very severe asthma and we try hard to keep him doing everything. He takes ventolin before playtime, pe, swimming...basically anything particularly active. He's on flixotide, serevent, azithromycin...finally stopping fingers xd next week, monteleukast daily and he does still wheeze but he's encouraged by the rbh to do everything possible. He's been camping, on a zip wire, can swim 100m. Yes we also have our emergency pred pack with us if we go away, carry anti histomines in summer and never have a bag that cant contain his nebuhaler. With the right proactive treatment most children can do things they want. Alfie still has severely restricted airflow and the consultant is fantastic. The asthma nurse from hossie went into school to explain how brittle his asthma is and if they need to respond once he;s started wheezing treat and phone an ambulance hence ventoline before activities not after he's wheezing.

Good luck.

Margot x.

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hi thankyou everyone for all your support im not going to give up i refuse to i also work with special needs children and see what we have to do to get them help and i dont give up there so im not going to give up on my own daughter no matter how loud i have to shout to get heard thankfully all her blood tests and ct scan have been clear so they have now put her on meds for migraines hopefully this will help alot and we will both get a bit more sleep

thanks

marie