Worries over getting it right

Hi all I am new to the forum!

I am mum to 18 month old Murray who was diagnosed with asthma at 8 months. He is a lovely little boy who, from the moment he was born coughed. It was considered as mucus at first but rapidly progressed to coughs and chest infections.

Since then we have constantly lived in the Dr's surgery. I never seem to get this cough under control and I find I doubt myself. I often struggle to understand exactly when I am to increase the doses. I am wondering if I shall ever find confidence handling this.

It does concern me that we have never seen a specialist although I am told that it is not serious enough to be referred to hospital.

To be frank, I feel quite unsupported. Our Doctor can be so vague and I have feel that I have to know the right questions to ask all the time.

I don't know anyone who has a child with asthma or having a similar experience. I am not an asthma sufferer so I have no experience to draw from.

As a working mother I then have the double worry of my Nursery caring for him properly combinded with all of those horrid guilty feelings that go hand in hand with motherhood and careers.

At present Murray has had yet another virus and we have had a chest infection for 4 weeks. The Dr changed his medication to montelukast and sterotide. These worked really well for him. The coughing stopped although his breathing was still a little fast.

Sadly, even though the montelukast helped Murray greatly, it made him poorly and we had to stop taking it. Firstly he became hyperactive, then he started to show a general malaise. He would wake up in the night crying and clearly distressed. We stopped them and the effects wore off.

This was disappointing as the effects were really good.

Now we are taking the sterotide alone but the cough is back.

Sometimes I feel I need a strong guiding hand to support me through this.

Thank you for listening!!

Ailsa

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Hi Ailsa

I'm really sorry that you are going throug such a rough time at the moment. I know that it can be really hard to deal with and i oftne feel 'inadequate' with my dealings with my son's asthma (ollie's 3 1/2 - he was diagnosed a year ago but had had symptoms since a baby and had been on/off inhalers for ages.

I found that no-one really spent the time explaining how and when to step up/down the meds. What symptoms/signs to look for etc.

I suppose in some respects we were lucky as Ollie has needed to be admitted to hospital several times since Oct 06 (i know that sounds a bit silly). This has meant that we've seen lots of diff docs and nurses - each with thier own ideas of what to look for and how to deal with things. we've basically taken on board the info that we feel helped and ignored the rest - so now we have an action plan (downloaded template from this site) which we discussed with gp and consultant.

Have you spoken to the asthma nurse on this site - i found them really good - she spent 40 minutes talking things over with me and didn't end call until she was sure i'd understood all the information. I also ordered leafets from here which have helped me understand what to look for. It is really hard the doc's (or ours) basically gave us the inhalers and spacer - instructions fro giving it and that was that - we weren't really told/shown how to use them or for how long or when to up/lower doses.

I've found that reading past threads has helped.

but what really helped was me loosing it at the gp's one day - after a run in with very rude and unhelpful receptionist i was so angry i ended up in tears and after 40 minutes in gp's office we got it sorted. I now try to ensure that i understand exactly how/when and for how long etc i'm supposed to give meds and i don't leave until i'm finished (i'm sure my dr hates me but i don't care!!) - if i then don't understand then i phone gp to check.

I know it's very isolating especially beofre your son's at school as it's hard to meet other children with asthma. i now meet up with one mum who lives 30 ish miles away - we met via this site. We don't see each other that often but we do email /phone and at least we understand how the other one feels.

sorry for long post (i'm a bit of a rambler!!!)

I hope you get things sorted out for you and murray soon. I'd initially keep on at gp's - try to always see the same one and one you feel comfortable with - that really helps.

take care

claire

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