Some help for a newie??

Hello everyone,

Sorry if this is long winded, just feel as though could do with some help now, I and my two son's all suffer with asthma, however none of us so bad as my youngest. He was born prem at 34 weeks, as has suffered with respiratory problems since, has had numerous admissions and ITU visits etc. He was eventually diagnosed as asthmatic 2 months ago at the age of 20 months. He is now taking flixatide, salbutamol, montelukast, clarythramycin, oral steroids and nebulisers as needed. We have finally got a referral to a specialist resp pead coming this wednesday. What I wanted to ask is what i need to ask on wed?? My son is very breathless to a point that he is unable to stand and grabs at his throat when doing anything physical, Is there an oxygen level test with exercise at such a young age?? He also has a horrendous cough that produces massive amounts of mucus that makes him sick? Does everyone's children do this?? Is there any other tests or meds that i can ask for?? Is there a chance of me having a neb at home?? Sorry for all the questions just am very tired and could do with some support from others that know what it's like! thank you very much for taking the time to read this. I would love any advice. thanks

8 Replies

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  • So sorry to hear you are going through this. But it's brill that you have an imminent app with a resp specialist.

    My little girl (2) has a history v similar to your little one. Numerous hospital admissions from a very small baby. She was diagnosed with asthma when she was one but continued to have tests.

    Her resp cons has performed tests including sweat test (for CF), allergy tests, genetic tests, 24hr ph study, bronchoscopy and ct scan. As well as regular chest xrays etc.

    The type of questions I've always asked include: what can I expect as 'normal' from maddie, what is the next line of treatment, what plan do they have with regards to treatment, care etc.

    I also keep a diary as to her symptoms. So each day I write down how bad her cough is, whether she wheezes, how breathless she is, whether she gets any sleep etc, and whether any other symptoms are present, ie vomitting mucus, runny nose, going off food etc.

    This diary has also helped me in terms of managing her asthma at home.

    In answer to your question whether any other children are breathless an vomit etc- maddie can only walk 50-100 yards before coughing and panting. She'd love to walk further an often asks to, then ends up being carried or stopping to catch her breath. She's a very determined little girl thankfully and never gives up easily! She used to vomit most nights several times until her meds were changed. The new meds seem to dampen down the mucus so as not to cause it in excess quantities.

    We have a neb at home in which we use for her steroids twice a day (budesonide). We also have salbutamol nebs in case of emergency but have been advised not to opt for these as if she needs nebbing, then she's best off in hospital.

    I can sooo sympathise with you as to feeling exhausted with it all. My other daughter is asthmatic too but not as severe.

    Pm me anytime if you like. I know how daunting all this can be. You've definitely come to the right forum, I've found it invaluable for support and understanding.

    Good luck on we'd. Let us know how it goes.

    Emily. X

  • Hello and welcome

    I can't really add anything to what Emily has said, just that I have also found this site invaluable and I find myself logging in at least once a day. I am glad you have a referral appointment, let us know how you get on and take your diary with you as it is good to refer to as the symptoms and days often become one big blur, especially when you don't get much sleep!

    Take care, Clare x

  • thanks very much for ur message's, it's sooo nice to know I am not alone!! Also definately with you on the tiredness front, my asthma isn't great at the moment due to hayfever, so am finding I am either up with Maddox or myself. thanks again and will let u know how wednesday goes. xx

  • Hi, My 14 yr old son was also born prem at 34 weeks, and unfortunately developed respiratory problems soon after. As I was a severe asthmatic as a child (and still have grumbly asthma) I wasnt surprised when he was diagnosed with asthma more or less as a baby. He had tummy problems too, and was often sick, but not with coughing (like your son). Things settled down a bit when he was put on Singulair at about 7, but flared up when he was 11.

    I doubt you will be allowed a home nebuliser, we got one about 7 yrs ago (with GPs approval) and use it for emergencies. But protocol has tightened up a lot since then for various reasons. By all means ask the consultant about it.

    Good luck on Wed, I hope it goes well. Let us know how you get on and feel free to PM me anytime.

  • Hey ladies and gents,

    just to let you know we went to see the pead respiratory consultant today, and for once I can say he was wonderful, he has changed lil man medication, and has booked an admission to hospital for him, so that they can do a ct scan, chest x ray, rast test, exercise tolerance test, echo and many other things i can't remember, also they are going to sort pulmicort nebs for him from home and give salbutamol nebs for when he is very poorly as long as i get him to hosp straight after . The chap we saw was fab and i really felt like he listened and cared. Thanks very much for your support guys.xx

  • Hello

    Really pleased to hear that. Good luck with all the tests.

    Clare x

  • Am so pleased you had a positive appointment today. It's such a relief to feel listened to as a parent.

    Pulmicort is what maddie has twice daily (also known as budesonide) it's fab at diminishing secretions/mucous so I do hope you see a real difference with the vomitting mucous.

    Do let us know how things go.

    Lots of love x

  • thats a really fantastic outcome for your appointment

    hope things improve for your lil one and that the tests give you answers and something positive to look forward too, a way forward and a good management plan for your lil one's asthma plan.

    good luck with everything and let us know how u get on :)

    xxx

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