hi new and tired of feeling like a neurotic mum!

Hi all

Will keep the intro brief. As the name suggests I have two asthmatic boys. J is 5 will very well controlled cough variant asthma. R is 2.5 and was premature. He had a rough start being ventilated and our troubles have continued since then.

It really has been an enormous struggle and it continues as his asthma is poorly controlled still and I just feel we aren't really getting anywhere. Last weekend ended up with a floppy child and an ambulance to CAU. We often get told his chest is clear and to just keep doing as we are despite him telling me his chest hurts and he's physically exhausted and tachycardic. His chest was clear the last time he ended up on 15 days of pred so it's obvious he doesn't always wheeze. He knows when he's struggling though and tells me which is fab, but the drs don't seem to take much notice but I really need to learn to put my foot down and not worry about how much I'm taking him to be checked out. He sees a community respiratory nurse who is fab and takes the brunt of my fed up phonecalls but we seem to being left to carry on not really improving.I think I should be asking to be referred to a consultant (he had a neonatal consultant but was discharged before the worst of this started.) as I'm so tired of feeling like a neurotic parent.

I'm so glad to have found this site and see others are going through the same (which also saddens me.) for some moral support and reassurance I'm not mad!

Look forward to talking to you all.

4 Replies

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  • Hi,

    Im so sorry you are going through this anguish. Its certainly a horrid place to be as a mummy to asthmatic children.

    I have 3 children, all of which have varying degrees of asthma. My eldest(15) is mild, my middle child is moderate, although becoming worse as she gets older (aged 6) and my yougest (aged 3) is severe brittle.

    Its a constant limbo feeling with the two youngest as they have different triggers and between them manage to keep me on my toes daily. My 6yr old has allergies and is questionable as to whether she is anaphylactic now and my youngest is, at present, maintained on maintenence pred, and has not had a day without pred for 13 months now! And still they end up on hospital runs! Its terrifying. I can sooo empathise with your feelings of despair. :(

    I really think you should push for a consultant referral for your little chap. What did they recommend when he had his admission recently? Id recommend you visit your gp and explain everything you have said here. I really cant see a reason your gp could give that would warrant not reffering him. Could your community resp nurse support this too maybe?

    In the meantime, I really wouldnt worry how many times you go back and forth asking to be checked out. Its so hard when they dont wheeze as so many medics think this is the only symptom of asthma! I was told once by our resp nurse that if you dont keep going back, then they will assume everything is fine.

    In the meantime, sending you massive hugs for what is such an exhausting and scary situation to be in. I really know where you are coming from.

    Lots of love,

    Emily.x

  • Hi,

    I don't have children myself but can imagine that this must be massively scary and also that you might feel 'neurotic' even though you aren't - I've felt this sometimes for myself (am I just making a fuss over nothing etc) but I've been right about knowing that something is up and you know your child!

    Emily obviously knows way more than I would about having asthmatic kids, but just wondered, as the feeling of being dismissed can apply to anyone: have you tried all the GPs in the practice or is it the same one you always see who's dismissive? Just thought you might get further if you tried another one: firstly with actually getting a referral without having to fight and be dismissed as a neurotic parent (which you aren't) and secondly because from my personal experience even when you are referred it's always better to have a good GP in your corner - mine has been massively helpful to me, though at least you have the nurse who sounds helpful.

    Good luck and hope your son gets sorted soon!

  • Hello! :-)

    All I can say I go back and demand to be referred, the gp cannot refuse to refer your son.

    My little boy is 5 and I'm very glad to say that he has mild asthma (I'm brittle) but he has other health issues which I have had to fight to get diagnosed and treated in the right way.

    I too was made to feel like a neurotic mum, turns out I was right!!!

    My little man is now on the right meds and has had his life back since January, with the odd flare up here and there.

    Keep going back, don't be made to feel that you are wrong, you know your child.

    X

  • Hi. Thank you all for your lovely replies especially Emily. What you wrote really connected with me.

    My GP is on the whole fab I just don't think I get how much it affects us across. After all he can only go by what I'm telling him. I don't think he would refuse to refer us (not that he can) I just don't think he understands how we are affected and must believe as we have the community nurse we are doing ok. Although the amount we are there would probablyindicate we aren't!! I think I'm a bit guilty of just accepting what he says as he has been great in the past to me and my son and sort of hoping we can sort things between us but this is becoming obvious it needs someone with more in depth knowledge.

    It would be nice to have someone co-ordinating his care and give us exact instructions etc that we can pass on to any drs we then have to see in a&e or ooh. It'd be nice to have open access to cau too seeing as I'm yet to meet an ooh Dr who has a pulse ox for paeds that can actually measure his sats, the GP surgery doesn't either and when he's bad this is what I want checked really, as it's proved going by his chest alone isn't accurate.

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