Ready to just about give in

Hi I have posted on here a few times now and now I am so at the end of my tether with what to do my 11 year old daughter suffers with what I would call quite bad asthma she is at home more than at school she is always at the doctors being prescribed more and more steroids the speacialist tells me ""well she is getting better because we have had less hospitalisations"" well yes she has but she at the docs more and more being prescribed medication, she hasn't had a regular peakflow in I don't know how long ranging from 100 to 250 in a single day I am up most the time through the night with her i can hear her wheezing in my room she is coughing to the point of gagging and can't barely speak and yet by the morning after a rough night like last night she is completely clear chested but so worn out that it isn't fair to send her to school so tired and drained she always looks ill and now the doctor I saw today looks at me as though I am a bad mother for not admitting her to hospital but I have been dealing with this for so long now that I know how to deal with her at home and monitor her and even when I have took her into hospital they do exactly as I do at home I have a nebuliser here aswell with the treatment and when I get there they also tell me that there are so many coughs and colds on the wards that she is better off at home as they know us by first name basis now. I have all anti allergen bedding hoover mattress all the time boil wash bedding covers and blankets. We have had blood tests done all came back clear which i was gutted as it took me a year to get them as she is needle phobic so that was fun I can tell you then to be told all results are clear I wanted to scream what the hell is causing this something must be bloody wrong surely. My poor girl bless her is so down now she has had enough. Please tell me I am not the only one or that someone knows a magic cure I can't let this win I have almost lost her twice and I am not prepared to lose her .

14 Replies

oldestnewest
  • hey, i see your frustration so much, I'm 19 years old and my asthmas completly uncontrolled like your daughters, and my Dad really struggles because theres nothing he can do. Theres a couple ideas I've had, (but you may have already tried them) one option is to get your daughters specialist to refer her to one of the specialist centres for a more indepth investigation of whats causing her asthma, to check that is is asthma, and then to treat it. There are a few centres in England are very highly regarded such as Brompton in London and heartlands in Birmingham. You can always ask for this referal from her GP if you feel the GP is more understanding than the consultant.

    Do you mind if I ask what treatment your daughters on? could her preventer treatment be altered in anyway? I'm guessing from when you say blood tests they were investigating allergies? How far is your daughter from being 12? because I think that tends to be the age that more 'adult' treatments are began to be used, (although I may be wrong).

    Then lastly keep going, you will eventually win the battle for at least some control , please don't give in.

    ally

  • Hi thanks for your response it has really helped knowing that it isn't only us going through this its so bloody frustrating. The treatment she is on is

    Ventolin 100mgs 4-6 puffs morning lunch dinner and bed then breaktimes at school and pe.

    Seretide 125mgs 6 puffs morning and bed

    loratadine 10mg in the morning

    montelukast (singulair) 5 mg at bed

    flixonase spray in each nostril morning and bed

    then prednisolone 40mg (8 tablets daily) for 3 days about once a month normally but this time the new doc that I saw today has decided 10mg (2Tablets daily) for days

    and taking all the above is still not controlling the asthma what do you think ????

    Myself and my husband do not know what to do next to help her. She is 12 at the end of september. Will def have a chat with the doctor when I go back to him in 2 weeks for the review about being referred to a new specialist thankyou for repling to us once again. Shelly x

  • I really understand why you don't take your Daughter in to hospital, they are not always the safe, clean places they used to be, but they are under strain. The only thing I would say is that by treating your Daughter at home, the medical profession only have your word for how your Daughters been. We have been in exactly the same boat. When you have not been near the hospital in months, all is fabulous in their minds. The fact you are struggling and all is hell on earth goes unnoticed and when you tell them you can no longer cope, they look at you like you've lost the plot!When my Son gets ill now I go to the Doctors instead of starting treatment like I used to and tell him it all kicking off, I then phone both consultants and let them know too. When I have to use the nebuliser for the second time (after 4 hours) we now go to A+E or an ambulance if he is struggling. It is a total pain but now everyone is aware of what we are going through. I am jumping through all the hoops now but we do get let down in A+E often as my Son doesn't wheeze. You are not alone and you are doing the best you can.Watching your child suffering is the worst thing in the world and being powerless to stop it makes it harder.The more they see you the more they know you need help. I'm afraid it's out of sight and out of mind, wrong I know. Take care and hope all is much better soon.

    Kate

  • Hi yeah I am always at the doctors getting more treatment for her the only bit that winds me up the same as you is when I get the there (a) I never see the same doctor as I can never get an appointment with him as he is either fully booked or on leave lol what a joke and (b) like you she isn't always wheezy just extremely tight chested when I do phone the conslutant they say they so long as the dosctor has or is dealing with it then i should leave it to them and the bloody secretary doesn't always give them the messages i leave. If like you when she needs the neb more than once she is straight to the hospital and like you the A+E have checked over and as there isn't always a wheeze she is sent home with another course of steroids and a blast on the neb and we're left with the sleepless nights and very upset girl who thinks that she is a problem to us no matter what we say. I am now going to try and conside speaking to the latest doctor i saw yesterday to see about a referal to Brompton hospital in London as we are just at the end of it as nothing we do seems to make a difference the more meds she is put and the higher they up them they work for a period of time then we have these drops and weeks off school at a time Thank god the school we are at are excellent and are really helpful. Just dreading it as she goes to high school in september and they I know are really not very helpful so I would love to get a bit of stability for her before then and also she needs the help as its getting her seriously down now. I really appreciate the help you have given us.

  • My Asthma is getting worse as i get older! my little brother has asthma as well but we can control it! one thing i find works is sitting in the bathroom with the shower on with boiling water on so it gets steamy then just sitting in there for half an hour for like evry 2 days really helps! if not then all i can say is increase the inhalers! i find the doctors can be wrong at times! so go with your instincts and try other stuff! Do NOT try cough medicenes none whatsoever!! trust me Lol! hospitals cant exactly do anything but the nebuliser! Ask her what she feels like doing, thats what my mum does when mine gets bad coz i just collapse o the floor i where i cant breathe! i dont no how you cope ! she seems to be in a hell of a lot of discomfort! i herd scientists have made a tablet to cure asthma dont no how true it is but maybe talking to someone abut it! x sorry i cant really help but try the steamed bathroom i find it really works!

  • Hi thanks yeah we do ask her what she would like to do she always says she don't want to go to hospital unfortunately sometimes she has to against her wishes as there is only so mush we can do at home. Will def try the shower technique we used to do it when she was small bt for some reason we don't try it anymore thanks for the advice. As for cough medicines they won't sell it to me at chemists now as they say if its for someone who has asthma they should be given it from doctors lol

  • Hi sounds like seeing a asthma specialist would help. It is a wind up at first a bit like what your going through now, jumping through hoops and rings of fire to start with. It all seems like a complete waste of space but gradually you start to get some answers. Also you get all the new inhalers and ideas about asthma as they come out.

    My Son loves his back massaged when his chest hurts, it really relaxes him, also a hot bath helps. Be careful with too much steam as we hired a steamer for my Son when his asthma was bad and he ended up with bronchitis because of the damp air. We make him sit in the bathroom with the steam from shower for a bit but not too long. Winter sunshine has helped my Son this year and will be doing it again. He had swine flu and 10 days after was at deaths door (should have gone into hospital)we had a holiday booked and know from experience it was the best thing we could do for him, and it worked. We are having a really good winter with him which is a miracle. He still has severe attacks, like yesterday at school but he recovers from them quickly unlike normal when he crashes for months at a time.

    Take care and hope it starts getting easier. Would be lovely to have all the answers, maybe one day eh!

    Kate x

  • Hi thanks yeah would love to have some winter sunshine but unfortunately my hubbys firm he worked for went bust and we lost everything so now we saving money to get back up on the ladder lol. We do have a consultant but we are still in the same place that we were in when we first met her. my daughter also likes the back rubs while she is bad we have fond that getting her to breathe in through her nose and out through her mouth she calms enough to be able to use her inhaler better. All i know is that the amount of meds she is on is not helping her to lead a better life so tomorrow i am going to be quizzing doctors and specialists about more info that I have just researched. Thankyou all for all your help and advice i really really appreciate it

  • Hi Shelby

    Hope things get better for you, we were in the same boat last year, hubby lost his job last feb and because of health problems thought he'd never get another one. We cut back in dec 08 as we knew it was coming, it was hell.We only got income based job seekers allowance and I work part time, we were living on very little.He did get another job so all the redundancy money we had spent we manged to save again and put back in a holiday fund as we carried on for a while in credit crunch mode. It was our first holiday together.

    Thinking of you, it has to get better soon.It did for us, my hubby hated his job and was a grumpy old s*d and now he works a mile away, same money and not a manager so less stress and he loves it. Good luck tomorrow

    Kate x

  • Yeah I know what you say there the down side of ours was when my other halfs firm went down he was a self employed sub-contractor so there was no redundancy money lol sods law they call it. Yeah called the doctors today and the hospitalin london today aswell and they said that there should be no problems at all about going to them its just a case of getting the doctors on side aswell and fingers crossed the new doc that saw my daughter the other day has now basically said that he is not happy with whats been done in the last 2 and half years and to where we are now things should have been a lot lot further on and more answers should have been found so fingers crossed he is gonna be the best way to go to get the referal that we want and to get some good back up from him in the furture. Shelly x

  • That's better news,sounds like you've got someone on your side at last, God knows you need it, not been your year!We've had a few of them in the past, just hoping this one is going to be a good one for us as would be good to get 2 good years in a row, but that maybe asking too much!!

    Take care and let us know how it goes

    Kate x

  • Oh my god I could scream I had a call earlier from the consultant at the hospital and I'm going to have a meeting with her on monday. I called her wednesday for a call back and she finally called me this afternoon and I spoke to her about a referal for a second opinion at London and she a said that as we had reached to now we shouldn't go elsewhere as it may distress shaney (my daughter) which I could understand but then she said ""while I think about it you know those blood tests we took i had the final results they came in about 2 weeks ago she has a low imunity or something like that and need 2 lots of vaccination"" what the hell you knew this 2 weeks ago and she didn't think i needed to know until our next meeting which is due at the end of the month lmao. Then after discussing other things she says also I think instead of my hekp now you need the help of a asthma specialist I said i thought you was one she said no i am a peadiatric I was involving the specialists from norwich who although not seeing your daughter they are very familiar with her history and problems so thats where I am sending you to I think. My hubby has blown a fuse, my mum is spitting bricks and my sister has had a few choice words as they have also said that they are now going to put her on steroids long term as she thinks it will help her lol ""shaney is really on a awful lot of medication to be still getting ill, are you giving it to her correctly, do you watch her to make sure she is inhaling correctly. We'll discuss it all monday "" Hmmmmmm yeah i think we will

  • I just want to encourage you to push your GP to get her referred to brompton. With this NHS choice system you are within your rights to do so, go to your GP have a chat tell them you want to go there and you want to because you want a second opinion and you are not happy.

    I didnt do this with asthma, but i have done very similar with allergies i went to my GP and said i want to go to this consultant at this place because i am fedup now. Please refer me he asked why and i explain and i also said that if he wouldnt i would be asking for sponsors from companies so i could pay private. My GP told me he wanted me to stay on the NHS and he referred me. As it happened about 4 months down the line one of my other consultants referred me to an allergy specialist as well but that is just down right typical.

    Keep pushing and pushing and pushing and get your daughter to Bromptom using the new NHS choices to your advantage. She should not be suffering like this it is unfair to her.

    Let me know how you get on and as for the meeting on monday i would write a complaint letter to take with you hand one to the consultant you have been seeing and hand another to the PALS (patient advice and liason service) for your hospital and i would think you will get a reply of some decription. I think how you have been treated has been horrid and should not be allowed to continue.

    It did take my asthma 2.5 years to get under control but that was because i was allergic to the propellants in the inhalers, just a thought has she tried different inhaler forms, like MDI or accuhaler or turbohaler these might be worth mentioning as i found i was allergic to something in the MDI and aerosol inhalers therefore i was giving myself asthma attacks just taking them.

    Plumie

  • Hi I am still gonna go for the referal but I am also interested in what the norwich hospital are gonna have to say as if its true that they know so much about my daughter why haven't they stepped in sooner then if they say they don't know much about her at all the complaints are gonna seriously fly. I have got another appointment with the gp for a check up again in a week and a half then im gonna discuss the meeting and conversation what i had today with the consultant and see what his suggestions are

You may also like...