such an eery unsettled feeling right now :-(

Maddie was in hospital 10 days ago and since then she hasnt been quite right. Needing 10 puffs of blue regularly.

Shes been breathless on and off and has choked a couple of times. She keeps pointing down into her throat and saying 'puffer mummy'! Shes coughed til shes vommited the usual white frothy mucous too.

The thing is, im scared! I know i should be an old hat at this. Maddie has been through some horrid times and since being on twice daily budesonide nebs, has shown a great improvement. Its just, shes now gone downhill again! Im not prepared and not quite expecting it! Id become used to her being 'controlled'! (for all 9 weeks of it!!) and now im back to her making me feel on egg shells.

The horrid thing is, I think she feels the same now!! Shes never known good health but I guess she has had a good 9 weeks so is now aware she feels poorly! I dont want this Asthma right now! Im fed up of it and want my little girl to enjoy the simple things in life.

For me, the choking is sooo scary too! Im scared for her to eat! She was sick on Sunday, just because she cried! Shes sick mucous if anything happens to her breathing other than normal day to day! and day to day is rare these days!

Sorry to off load. Just feeling low right now and would like 'normal'!!

mind you, at the sasme time i know how v v v v lucky I am and how there are alot worse off so for that I am v grateful indeed!

13 Replies

  • Hi Emily35,

    I feel for you and know exactly what you are going through, I feel like I am always treading on egg shells and am on ""red ""alert at the mere hint of a sneeze, runny nose, barking cough etc etc.

    Its so hard to watch your child suffer, and I just dread the feeling of knowing what is to come (butterflies in tummy even though I know the pattern of illness!)

    Its great that we have this site to offload how we are feeling and just to know that we are not going through this on our own.

    I can't imagine (well I can) what it must be like for my son Louis and also Maddie to suffer with such terrible asthma, but Louis is a fighter and always bounces back. Thats what I love, when he turns the corner (usually after steroids, home nebs, anti b's etc have kicked in ) and its like a huge weight lifetd of your shoulder and I sit and just think blimey we got through it......... until the next time as there always seems to be a next time.

    Sorry to ramble but I don't think i'll ever ever loose the scared feeling that comes with asthm.

    Hope Maddie gets better very soon, we are always here to listen and support each other.

    Lots of love and hugs

    Serenity xxxx

  • Emily - I know how you are feeling (and Serenity too). It hits you hard when they've had a 'good patch', it's so disappointing when their asthma is bad again. My son had a goodish four weeks, well, he managed school for four weeks. And then he caught a cold last week, on his chest and all the usual (antibiotics, off school, up and down in the night, nebuliser on standby, cancelling events etc). He's very down himself, I suppose he sees no end to it.

    I'm with you on the 'red alert' Serenity! If my son sneezes or coughs all the alarms bells go off in my head. And if me or anyone in the family have a cold my first thought is will our son catch it? Dread colds, they are the bane of our lives.

    Sorry Emily, this isnt helping you much. We're all scared together...I know it's obvious but have you been back to the doctor or contacted her consultant? xx

  • Hi all

    Deep down I think we are all very scared about our children's health, but unfortunatly have to hide the fact from people and our children. because if we really showed how much we really worry, we would all be physical wrecks. But at least we have this site to rant on.

    Sorry probs not making much sense but I know what I mean lol. I hope Maddie improves soon and everyone else who feels poorly at the moment too.

    Shelly xx

  • Thank you both soo much for your replies. I'm sorry you are both feeling the same but also feel comfort knowing you feel the same and can empathise. Thank you soo much.

    I've left messages for both our community resp nurse and resp consultant. The nurse called back but I sadly missed her call. I guess I'll speak to both tomorrow. But slso feel that I have no concrete thing that's wrong with her if that makes sense. She's not wheezy or chesty! Just bringing up mucus whenever her breathing is challenged! What on earth can they do to help?! Do you ever wonder to yourselves 'is there anything anyone can do to make this better'?! I feel like I'm at a loss with it all!

    Thanks so much once again

    Emily x

  • Thinking of you and Maddy. Sounds like she's got a chest infection. Oscar and I have just got back from hospital :-(

    I remember when my daughter Ruby was ill for a long time when she was very little I believed at the time she was getting down and feeling fed up with everything and this I found very distressing.

    I hope she gets better soon and things improve for you all.

    best wishes

    Victoria xx

  • Oh Emily, so sorry to hear you are upset and Maddie is not well, I hope you get to see the consultant very soon and things improve.

    Big hugs to you

    Clare x

  • Just a thought- Atrovent is a different kind of reliever that can be used as well as ventolin and can be good for reducing mucus. I think it can be used for children, maybe it would be worth asking her GP or cons about it?

    I really hope Maddie improves and feels a lot better soon.


  • Oh lorna, thank you so much. Sadly maddie tried Atrovent wen she was tiny but didn't respond to it at all. :(

    We are waiting for the speech therapist to come to assess her swallowing reflex as they think this is happering her swallow which in turn is leading to food in her lungs causing aspiration pneumonia constantly. I'm not sure I agree with that verdict as a conclusion, maybe a part of the problem though.

    She is coughing again lots tonight so again I wait for something to happen......:(

  • hi i'm new

    hi ive just started a post saying im new with a 3 year old who sounds the very same to your little one and also called maddy! she coughs and then she is sick and loses so much weight when she gets attacks its horrible, so glad to know im not alone!!

  • haydo - so sorry to hear youre struggling with your little girl too. Its so iscolating and scary isnt it. Massive hugs to you.

    Maddie once again is not great. We never take her to mix with others and her life is a very simple one due to her need for meds etc. anyway she was invited to an easter egg hunt today so we decided to let her go. There were only 4 children there. It was such a lovely afternoon and everything was great while they sat making the eggs and cards etc. Then it was time for the hunt. sadly Maddie just couldnt keep up with the hunt and had an attack. :-( She just cant be active :-( She coughed so much and couldnt catch her breath and then was sick sooo much mucous. I finally got things under control with 12 puffs of ventolin and things calmed. Im not sure if i needed to call the out of hours or not. Shes settled now although very chesty.

    I will definately see the gp on Monday.

    Again, i feel on edge and scared. Weve had a couple really bad nights with her and I guess this is the result.

    Just feel like crying and crying. All she and I wanted was a normal childrens celebration. And it wasnt to be :-(

    Sorry, dont necesarily want/need replies, just needed to get it down. Feeling totally gutted that her life is forced to be so simple.

  • Emily, It's the same with my son (now 14). Life has to be kept fairly simple because he just cant keep up with the others. His school has a paintball day every year for fundraising, he'd absolutely love to go but it's out of the question. It gets him down when the other lads are running around at school and he cant join in. He's going through a bad patch too, but just have to keep hoping for better times ahead.

    I hope Maddie recovers soon, it's really hard I know. xx

  • Hi Emily, just to let you know my friend has 2 daughters who aspirate. Her oldest daughter was initially diagnosed as having asthma but after eventaually being referred to GOSH theyfound she has an unsafe swallow and aspirates on all food or drink thinner than fruit puree or yoghurt. This was causing choking, regular vomitting and constant chest infections. hers was only picked up after a bronchoscopy which revealed pnemonia. She had a number of swallow tests to see how thick her food or drink needed to be to not be aspirated. She has an NG tube for a while as she was still being bottle fed and she constantly aspirated on her milk. Her other daughter was diagnosed earlier due to the family history and she now is on regular prophylactic antibiotics and has thickener added to her drinks to prevent aspiration. She too was diagnised as asthmatic to start with. It is possible to have both asthma and an unsafe swallow, and a chest infection will agravate the asthma. Perhaps they need to find out what foods/drinks she aspirates on and help illiminate the infections which hopefully in turn will help the asthma be better controlled. Have you seen speech and language yet? Hope Maddie is better now.

  • Hi Emily

    I hope things are improving for you and Maddie, thinking of you both.

    Clare Xx

You may also like...