feeling like we're trying managie an uncontrable asthma

HI there I was wondering if anyone can offer some sane advice for us. My daughter has been diagnosed as asthmatic since she was 20 months old she is now 10 years old and only now does it feel like someone is taking notice. It wass only 2 months ago a stand in doctor was in our surgery covering for another doctor off sick. One check over of my daughter and she refered her to a specialist but even the first one of those weren't helpful the second time she went to a speciallist was when i made an urgent appointment. As soon as i got in there she admitted her and sent letters to my doctors demanding explanations as to what they had been doing or not doing for her to be so bad after nearly 10 yrs of treatment. since then the only way they seem to be controlling her at the mo is to prescribe her 10 puffs of 100mg sabutamol every 4 hrs through day and night, 2 puffs of seretide 100 twice daily, predisonal (now down to 2 tablets from 8) every morning then amoxiclav to keep away any infections ( she was rushed in to hospital by ambulance and kept in for a week as we nearly lost her 2 weeks ago) then a singulair pill 3 hrs before bed. This is all to keep her going as since her being hospitalised they can't keep her under control. As soon as they drop the amount of puffs she needs to go back and she gets bad again, if they lengthen the hours she does the same we have done allergy tests and are now awaiting the results but until then they say that all they can do isgive us a stand by bad at the hospital and keep her off school to prevent any posible bugs and making her ill. Is there anyone else out there that can say what else we can try or get them to try please. Not sure how much more we can take

shelly

7 Replies

oldestnewest
  • Hi, Shelly,

    I keep reading and reading different posts from many concerned ""new-asthma"" parents and cannot believe that kids in England are just not treated for asthma. It looks like the most common cure is albuterol (or as you call it: the blue inhaler) but this is simply not keeping the asthma under control. You need the so called ""long-term"" medications. In principle, the oral steroids are given for short term treatments after which other type of inhalers (some of them with steroids) and/or medications are used every day. For more information please look at the American Lung Association web-page and go to the ""treatment options tool"". It could give you more information about treatments and would tell you exactly what to discuss with you doctor.

    I hope your daughter gets better soon!

  • Hi thanks for the info I will definately have a look at it. I know about a lot of other treatments that they can offer such as different steroid inhalers as i know from the past they have tried many on my daughter there has been brown red green and now she is on the purple we have also tried turbohalers aswell. Hence now at the current time my doc that i see now has already said that at the mo the last option that he could give to her as an emergeny inhaler is Atrovent to take when all else is failing, however he said that there is a pill form thing but he wants to wait and see what the specialist says first.

  • Hi is your daughter seeing a respiratory specialist or a consultant at the hospital? we have just seen one for the first time this year, we've seen loads of consultants but not a specialist one before. We saw three on Monday!I feel so much calmer knowing my son is now seeing someone who finally knows what they are doing!My son has severe asthma and is 8, it is such a relief having someone I trust at last! Matty had a bronchoscopy on Monday where they put a camera down his throat and into his lungs (sounds worse than it was) but he has finally been properly been diagnosed with asthma. He has never wheezed ever, his left rib sticks out and his chest distorts, now I'm older and wiser I show the dr's this and they take notice!, he coughs so we have had to fight tooth and nail to get treatment and I was right (don't feel good about it though),Matty is on Atrivent 3 puffs twice a day, 2 puffs of Seretide 250 twice a day and 10mg of montelukast while he is well, but loads more stuff plus steroids when it gets worse. We've found that using the atrivent as a proventor twice a day really helps, he was taken off this last year by our local consultant gradually over three weeks, it almost killed him so we mess with it no more. Phoning the asthma helpline is great because they give you the confidence to put up a fight.

    When we go back in a few weeks he will begin the correct treatment which matches the finding of the bronch.

    A respiratory specialist is definitely helpful. We have a 150 mile round trip to see ours but it has been so worth it. we also see a chiropractor which has helped too. sounds weird but it works.

    Good luck

    take care

    Rattles

    I hope you get the help needed

  • In June 2006, a team of Japanese researchers headed by Y Mizuno from Jikei University, Tokyo, found that children with asthma had significantly lower levels of vitamins A and E than those without asthma. I'm not suggesting you should cease your daughter's medication, I'm simply saying if she were my daughter I would think about her vitamin A and E levels. Sorry to hear she has had such a bad time.

    Best of luck,

    Marian.

  • HI there how do we actually get to be refered to apecialist as all we see at the mo is consultants. Imsorry to hear that your son is bad but not to mean it but im pleased that im not thew only one anymore that their child is bad with this and that im not the one being an over sensitive mother that i have been made to feel like.

    ALso i will look into the vitamin things aswell. I reckon my daughter may need it as she is so skinny she weighs 4 and a bit stone and we're trying to get to put on a lil bit more. could be down to that aswell mind you the docs are as about much with that aswell as i dont know what. I do appreciate all the halp

  • Hi, I suggested it after my son had pneumonia in january and his asthma got really bad. He's been to the consultant today and is on 2 puffs blue puffer every four hours. I think our consultant knows that he is such a difficult case it's best to hand him over now.Just keep on at them and eventually you wear them down!!We saw a consultant four years ago who said he couldn't possibly have asthma as he didn't wheeze, luckily we had an asthma nurse then at the hospital and she got really angry with the consultant.

    Today after seeing our local consultant I phoned up the specialist to get some more advice, he was on the phone within a minute helping me (usually wait 3 days if I'm lucky to speak to local consultant!). Matty is now back on steroids 8 a day for 5 days and this time I'm a relaxed Mum, I finally feel we have the safety net we have needed for such a long time. I had a mini stroke last year because of the stress of dealing with a sick child on my own. I was 38.Please ask for the help of a specialist, if they had any other illness they would be swamped with them!

    My son is really skinny too. I cook everything from scratch and they eat masses of fruit and veg but Matty is taking part in research will get the answers in a year maybe they are lacking in some things because of his condition. My other son is a good healthy weight!

    I hope your daughter gets better soon, I know how tough it is and you don't have to do this alone. Take care of yourself too

    Rattles x

  • there isn't a cure for asthma, the best you cando is control it.

You may also like...