I Feel I Am Coping Alone

I have a 6 year old son, who was diagnosed 4 years ago with Asthma, but I don't feel anyone is taking any 'responsibility' for his treatment, and I have been left to cope alone.

His medications are Ventolin (salbutamol). Clenil (switched from Becatide) and more recently Montelukast. We visit Alder Hey Childrens hospital at least monthly, somtimes weekly with severe attacks. He is patched up and sent home, despite my requests for some type of care plan.

He sees the Asthma nurse at our GP practise 6 monthly, however she is not an Asthma specialist and did not even know what a care plan was. After many protests on my part, the best they could come up with was for me to try Montelukast, which after 5 months has made no difference.

I am now at a point that I don't kow if his Asthma is getting worse, or the hospitals change of policy on Nebulisers has made a difference. They no longer give them, unless it is a very real emergency. Although his attacks are slightly milder, they are lasting for about 6 weeks and requiring loads of steroids, but again, nobody is monitoring this.

Is it normal to be left to cope alone like this. I just feel like crying. We were due to fly to Tenerife this morning, but after another visit to the hospital yesterday he was declared unfit to fly. I am really concerned about what all of this is doing to his little body.

Can anyone advise on what I should be asking for, who should be monitoring what is going on?

Thanks

Karen

7 Replies

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  • Hi, I really felt for you reading this post and so sorry you all missed your holiday. If I were you I'd be asking for a referal to a respiritory specialist as it does seem no one is taking control.

    It can be very draining caring for a child who is unwell and even more so when you feel unsupported.

    I really hope jack starts to improve soon.

    Maybe you could ring the asthma uk nurse helpline who may be able to suggest ways of getting a referal.

    There are a few of us here who have asthmatic children and would be happy to listen when you feel alone

    Julie :-)

    Good luck

  • Hi Karen

    I'm so sorry that things are so rough for you all at the moment. I do know how you feel - it can at times feel very lonely. So please take care of yourself.

    I'm not medically trained so can't really comment on Jack's meds. But i would reiterate what Jackie said and push for a referral to a paed resp consultant.

    We had a reallly bad year last year - where i felt very low and alone - noone seemed to understand the pressure i was under and as most people we know don't really understand asthma we found talking to family not much help (it acutally tended to be more stressful!!).

    We downloaded an Asthma Action plan from this site and i filled it in then discussed wiht GP and consultant (alhtough neither of them seemed to be aware of AAP before they saw ours!!!). I've found it really helped especiallly when we had to see diff GP's or consultnats as it clearly showed everyone what we did and when. It also helped to stop me and Ollie's dad from slipping into bad habits and it definatley helped me when worrying in the middle of hte night whether or not to bother dr or go to A&E.

    I'd definatly speak to asthma nurse of htis site - i found them reallly helpful - they gave me confidence to be more assertive with GP and hosp dr's. They talked until they were sure that i was happy with what had been said - it was a really positivie experience. I'd also send off for some of the leaflets - they are full of loads of useful advice and easy to read.

    We don't tend to see asthma nurse - i didn't find ours that helpful and as she only offered appts once a year - i couldn't really see the point (we were at that time in and out of hosp every month!!)

    After having a few probs with GP's and thier damn receptionists!!!! We now try to always see the same GP - this has really helped as he knows ollie and knows how he is when he's ill and well. I have to say after 'loosing it' in gp's sursery and then spending over 40minuites talking to him - complianing about other gp's - receptionists and hospital - things are now really good - he now understands me and my needs as ollie's mum.

    I know it's hard to see them on so many meds - but if they need them to keep them well - then it's the lesser of two evils. I hate Ollie having pred and although he hasn't had as much as last winter he's still had quite a lot this winter. As for monitoring - I tend to keep a list of what he has and when and discuss it with GP's consultants whenever we see them.

    Don't ever feel afriad of being labeled 'an over anxious mother' or or being a pain - you are Jack's mum and you want what's best for him - you also know your son better than anyone else - i think that DRs sometimes forget that.

    I hope that things start to get better for you and Jack soon. You can always PM me if you fancy a RANT/MOAN etc.

    I'm sorry that you had to miss your holiday - I would have cried too. I hope that you get to have a holiday soon.

    Take care of yourself

    Claire

  • Hi

    If you are going to alder hey does that mean you are from liverpool? I want to send you a private message so we can chat more but your setting won't let me.

    love steph x

  • Not alone even though it seems it.

    I just wanted to add how much I felt for you after reading you posting. I am so sorry you are having such a hard time and for what it's worth I understand how you feel. I am new to the site and my 20mth old twin boys are seeing a consultant this week after repeated and ongoing breathing difficulties. Thankfully our GP is wonderful as is the receptionist at the practice who always makes sure the boys are seen straightaway...we are lucky.

    However never underestimate how tired all this makes you..the broken nights..the constant worry...struggling to get you kids to eat..it's exhausting isn;t it? On top of all that your much needed holiday had to be cancelled..no wonder you cried..I could have done the same for you sweetie.

    Please keep going and I am sorry I haven't the experience (except as a tired mother) to advise you further but there are people who understand out there. Keep posting and look after yourself and your family.

    Much love

    Jane

  • I understand exactly how you feel, I have a 5 year old son who has suffered terribly since he was around 3 months old, although doctors wouldn't diagnose Asthma until he was 15 months which is understandable as so many young childrens are mis-diagnosed all the time. My son takes Becotide 100 every day and his ventolin inhaler when he needs it, which tends to be most days. He ends up in hospital on a nebuliser every other month and is prescribed prednisolone *spelling* like sweets. The only time my son gets to see a doctor or a nurse is if he's really ill and they don't seem to want to do a check up in the meantime. But ive decided to get something done about it, I got a letter from our doctor to make an appointment for my son to discuss the change in his medication as his is to be disscontinued. So when I finally get the appointment (it's like trying to squeeze blood from a stone) i'm going to demand some kind of care plan from our GP/Asthma Nurse, maybe if I get on at them enough then maybe they'll take some interest in my sons health rather than on their wage packets.

  • Hi

    Just wondered how you and your son were doing? Keep posting if you can..I know it's hard when you are tired

    Jane

    x

  • THANK YOU FOR ALL OF YOUR MESSAGES AND SUPPORT.

    Thank you everyone who post replies and sent me private messages, I can't tell you how much it helped. Along with the practical advice, your morale support was overwhelming. I am new to this site, but I will be a regular visitor in future.

    I would like to say, that whenever we attend A & E, they are excellent. They give my son the best possible care, my problem was that it ended there, there is never any follow up, Asthma UK have advise me that they are campaigning for this to change.

    So this is what has happened to me since my initial posting....

    My sons immediate symptoms had already started to improve, so my husband telephoned the airline, who agreed to us changing the dates of our departure so that we got a shorter holiday. We had to pay extra, but it we felt it was worth it. The lady on the other end advised my husband that changes can be made up util 4 hrs before our flight, we telephoned with 55 minutes to spare.

    Next I took all of your advice. I ordered loads of information of the Asthma UK website, unfortunately they do not yet have an action plan for my sons age group, but the other information I received was great. I have started to monitor his peak flow, and I have requested a copy of all of his records from Alder Hey.

    I then telephoned Asthma UK, who were brilliant. The nurse took her time with me, and went through everything, I felt really confident going into my GP and I knew what I wanted and how to ask for it. This was always a problem before, although I knew Jack wasn't getting the right care, I didn't know what he should be getting or what to ask for. The Asthma nurse also heard our bird chirping in the background, and advised it be moved until we see a specialist and have allergy tests done. My Dad, is now looking after Angel (cockatiel).

    I have seen my GP, who has made some changes to his medication, I am not entirely happy with the changes, but they are for the better, and it is only temporary, as she has agreed to write to a specialist to get an appointment for Jack - Hooray! She also examined him, and agreed he had improved and was well enough to fly. We got back yesterday from a fabulous holiday in Tenerife.

    I am feeling more positive and more confident. I am not kidding myself that there is going to be some miracle cure and Jack will never have another Asthma attack, but I now feel that I have somewhere to go for advice and support thanks to all of you, and Asthma UK.

    Karen

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