Child newly diagnosed and we're struggling

Hi all,

My name is Lianne and I have an 11.5 month old daughter called Holly who was diagnosed about 6 weeks ago (although as you'll all know it's not a definite diagnosis due to her age but GP and Paediatrician are treating it as such for now).

She has a long history of chest infections starting at 8 weeks and has been coughing for the past 6 months. She has also had pneumonia and was coughing until sick at least once a day and when things were bad this was two, three, four or five times a day.

Anyway, GP decided the best thing to do was to try asthma medication and we started on Becotide and Salbutamol about 6 weeks ago. We haven't made a great deal of progress and were on holiday a couple of weeks ago and things went down hill rapidly. The sickness with the cough was awful and she was wheezing the all time. Being new to it all we just increased the amount of Salbutamol we gave her but GP has since advised we should really have taken her to hospital. We saw a Paediatrician this week who has changed the Becotide to Flixotide and also prescribed a nine day course of oral steroids (40mg for 3 days, 20 mg for 3 days, 5 mg for 3 days) which from what I can see is pretty aggressive.

Today she is wheezing badly. We gave her 3 puffs of Salbutamol first thing this morning which eased things a bit but definitely didn't stop it completely and we are at a loss as to what we should do next. She is happy in herself but refusing to eat again today which is always a sign that she is struggling a bit. So, after my long waffle my main questions are:

1) Is wheezing all of the time OK or should we seek help?

2) Do any of you have to give your little ones Salbutamol daily due to wheezing?

Having never dealt with this before I guess I'm not sure whether my expectations are unrealistic. I really thought that with the oral steroids and the steroid inhaler we would reach the point where she wasn't wheezing at all for at least 24 hours. Is this where we should be aiming to get to or is it normal for them to need the Salbutamol daily?

Thank you for anyone who has made it to the end of this gigantic post!

Kind regards

Lianne

15 Replies

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  • Hi Lianne

    I'm sure there are people on this forum much better qualified to answer your questions than me but we've always been told that if you need the Ventolin more than three times in a week then the asthma isn't well controlled and you should see your doctor or asthma nurse.

    Given how young your daughter is, in your position, I'd take her to the out of hours doctors today or to A & E even if I felt I was making a nuisance of myself. She's only a babe and I'm sure they would rather check her over and send you home if she is fine than have you wait until she is very poorly. Being so out of breath all the time if very tiring and if her chest isn't very 'strong' she isn't going to be able to fight off any infections either. And she's already had pneumonia once.

    See your doctor today. Will keep my fingers crossed for you all.

    Jacquimac

  • struggling

    Hi,

    My little boy (Alfie is now 4) by the time he was 2 he'd had 20 emergency admissions. Having a baby whos finding it difficult to breathe is scary! I'm a little surprised that you've not been given atrovent as well as salbutalmol because salbutamol is less effective in little ones. My son is on flixotide (850mcgs daily). If your daughter is struggling it needs to be managed agressively this is vital. It is also vital that you reduce the dose of oral steroids very gradually. The oral steroids should bring it under control.

    My little boy is often on daily salbutamol but it does mean that the asthma is not controlled and no it is not good enough.

    Signs that things are wrong: the salbutamol needing to be given more than 4 hourly,

    For us when Alfie was little one of the signs of problems was that he couldn't get enough breath to drink!

    that your daughter is sucking the skin in between her ribs. That her breathing has become very fast, that looking at her she is obviously working very hard!!!

    Finally danger is when after wheezing and working she goes silent!

    I would say that with a small baby I'd be going to a&e if I was scared or if any of these things are happening - they will not think you're stupid.

    Good luck and please seek help if you're scared.

  • Update

    Hi,

    Thank you to you both for responding. We did take Holly along to A&E in the end yesterday and she had 3 nebulisers and then settled down so we could bring her home. Her breathing wasn't good last night again but we sat tight and she settled again. I really had hoped that the oral steroids would have started to work by now given that she was on a fairly high dose for her age but it appears that we haven't quite cracked this yet. The other thing the doctor we saw yesterday told us to do is put her on a reducing regime of Salbutomal giving 8 puffs every 4 - 6 hours for 24 hours, then 6 puffs every 4 - 6 hours for 24 hours, then 4 puffs and then 2 puffs. They also put Holly on antibiotics as they think she may have a throat and ear infection but the steroids make it difficult to be certain.

    I keep thinking that we'll get things to settle soon but we don't seem to be getting very far at the moment.

    Thanks again for your responses yesterday

    Kind regards

    Lianne

  • Update

    Hi,

    Thank you to you both for responding. We did take Holly along to A&E in the end yesterday and she had 3 nebulisers and then settled down so we could bring her home. Her breathing wasn't good last night again but we sat tight and she settled again. I really had hoped that the oral steroids would have started to work by now given that she was on a fairly high dose for her age but it appears that we haven't quite cracked this yet. The other thing the doctor we saw yesterday told us to do is put her on a reducing regime of Salbutomal giving 8 puffs every 4 - 6 hours for 24 hours, then 6 puffs every 4 - 6 hours for 24 hours, then 4 puffs and then 2 puffs. They also put Holly on antibiotics as they think she may have a throat and ear infection but the steroids make it difficult to be certain.

    I keep thinking that we'll get things to settle soon but we don't seem to be getting very far at the moment.

    Thanks again for your responses yesterday

    Kind regards

    Lianne

  • So glad to know that your little one is improving. Will keep my fingers crossed for you that this continues.

    I know that sometimes it is hard to know what to do for the best when you feel like your flying blind. Hopefully the hospital have given you some advice about what to expect, what could be labelled as 'normal' and when to seek help.

    Parenthood, eh? They say there's no tougher job what they don't tell you is how many years you knock off your own life expectantcy with the constant worry!

    Jacquimac

  • Hi

    I know exactly how you feel. My son Benjamin started to have symtoms of asthma at the age of 6 months (he is now almost 2). His symptoms started when I went back to work and he started to attend nursery and picked up a new cold/virus every day! We have always been told that if Benjamin's Salbutamol does not stop him wheezing for 4 hours then to take him straight to A&E as he needs to have a nebuliser. He only seems to suffer when he gets a cold. as soon as he gets a cold now we go straight for the Salbutamol and he has 6 puffs every 4 hours and then this slowly decreases as the cold gets better. He also takes 2 puffs twice a day of Clenil Modulite (which is a CFC free inhlaer which has everything that Becotide has). He takes the Clenil Modulite every day, no matter if he has a cold or not. If I were you, I would try and get a referral to an asthma nurse. We started seeing an asthma nurse at the beginning of the year with Benjamin and since then his asthma has been a lot more controlled.

    I hope this helps!

    This is the first time that I have been to the Forum and I certainly feel that it helps to share experiences of my son's asthma with others.

  • Hi

    I'm new on here tonight too hi.

    My son is 6 and has just been diagnosed, it's all abit scarey isn;t it. I'm still trying to get to grips myself.

    I hope you get it sorted soon.

    B x

  • 4 year old son newly diagnosed

    Hi,

    I have a son who was diagnosed with asthma about 6 weeks and at the start the reliever appeared to control but then he got a very nasty cold and he was prescribed a preventer as well. During the night now he only coughs once, but our concern is him playing in the school playground. Basically he can't run round like other children without coughing until he is sick or nearly sick. We saw at first hand today at his school on how he is when he plays with other children. Socially, he is missing out because he can't join in with them. He has to sit down, calm and just watch them play. I felt like crying when I saw him. He has a doctors appointment this evening so I am hoping things will improve, but I don't know how as he is having the full dosages of everything he can possibly have. The way things are going I can see him being admitted into hospital.

  • Hi sjhumpage, welcome to the boards.

    Don't panic - there are several other options that your doctor can offer medication-wise to help control your son's asthma. It's a shame he's having to sit out, but once his asthma's under control I'm sure he'll be back to running around and joining in just as before.

    Let us know how you get on at the doctor's appointment.

    CathBear

  • Hi CathBear,

    The doctor has increased the use of my son's preventer starting tonight. As he is already have 2 puffs 4 times a day with his reliever, he couldn't up that or didn't want to. My son has to go back in 2 weeks to see the nurse to check that it is helping him. We will just have to wait and see, but if he gets any worse he is going straight to A & E. It is making myself and husband stressed because of all the worry.

  • Another update and a question for experienced people.

    Hi to everyone who has responded and my heart goes out to all of the people who have posted recently with new children who have recently been diagnosed. I haven't been on for ages and ages but thought I'd just give everyone a quick update and let people know that there is hope!

    After my last post in March things got much much much worse. After having 3 courses of oral steroids and increasing the dose of Flixotide Holly was still coughing until she was sick at least 5 times a day and was on upwards of 60 puffs of Salbutamol almost daily. She was tested for Cystic Fibrosis in May which was a horrible experience but thankfully the result was negative. For us, our saviour came in the form of a GP who could see we were absolutely at our wits end. She was on so much Salbutamol that she was a shaking quivering wreck most of the time and the hyperactivity was horrendous. We took her into the surgery and put her down and it was like putting a bowling ball down. She just bounced off the walls and the furniture where she simply couldn't sit still because she was so hyper with the Salbutamol. Another great side effect was the fact that she was so wired the whole time that she wouldn't sleep for more than 2 hours at a time (so obviously that meant that no one in our house slept for more than 2 hours at a time. A receipe for a really happy house!). In general, I can safely say that we had the worst 12 months of our lives. The GP suggested that we try giving her Atrovent 4 times a day and it worked! Since starting the Atrovent we can get through between one and two weeks without her needing any Salbutamol. This is a massive achievement given that we couldn't get through a day prior to the Atrovent being added. I know that it wouldn't be the answer for everyone but I think I just wanted to let people know that there are lots of options and that maybe there is something out there for other people that would be the equivalent of Atrovent for Holly. (I don't want to offend anyone who is struggling with asthma that is much worse than Holly's by over simplyfying things and I do know that we are very lucky to have found an answer)

    She is still pretty up and down but we do at least feel that we have some degree of control over the asthma. I was reading the post about the 6 year old boy who has to sit things out and that's something that I'm already finding really tough. At 18 months Holly wants to run everywhere and tries to keep her with her older brother. I find it heartbreaking when she simply doesn't have enough puff to be able to eat let alone chase Jack around.

    For the more experienced out there can I ask a question? Holly gets very very breathless alot of the time. She doesn't appear to be wheezing but seems to really struggle to get her breath and as I say, she can't manage eating and goes absolutely silent (not normal for Holly as we generally have constant chatter and noise from her). I'm not sure what we should do when this happens? Does anyone else have experience of this?

    Our Paediatrician is still telling us to expect a horrible winter but is hopeful that this will be the worse one we face and that things should start to get easier. We have everything crossed. It's amazing how dealing with asthma becomes part of your life. It's required lots and lots of effort to stop watching her every hour of the day and to accept that we have to let her get on with things and can't wrap her in cotton wool. When we first started I felt a constant sense of anxiety as even when she was well I was waiting for the inevitable times when she wouldn't be well. All this really did was rob us of enjoying the fantastic little girl that she is. Asthma will be a part of our lives for the forseeable future but I can safely say that it is no longer our entire life like it had been for the past 12 months.

    So, there's my story of hope (hopefully!). I know that we are very lucky and that other people out there are dealing with asthma that is far worse than Holly's but for us it looks hopeful that we have things under control.

    Kind regards

    Lianne

  • Hi Lianne

    I'm glad that things have calmed down for you all and Holly over the last few months. As for Winter and what to expect - i know how you feel. Just when you think you're getting the hang of dealing with it winter comes again!!!

    As for your question re breathlessness - i'm not sure but I would put this in as a new post so that it's better highlighted.

    My son Ollie (3) never (rarely) wheezes but is often breathless and finds it difficult to eat or talk (a clear sign that he's poorly as he's a chatterbox) . When this happens we give him his blue puffer up to 10 puffs 4 hourly if he's still like this or doesn't last 4 hours then we see GP or Out of Hours or A&E - I may be completly wrong and also Holly's asthma may be completely different but for us these are main signs that Ollie's not well. I would tallk to DR or asthma nurse about this.

    We're not that experienced yet - just facing our 2nd winter - so far it's bit better than last year - we're managing asthma at home more effectively and have only spent 1 afternoon in hospitl but we're still very very regular visitors to GP's surgery!!!!

    Sorry not to have been of more help and I hope that Holly's ok at the moment.

    Take care

    Claire

  • Thanks

    Hi Clare,

    Thanks for your message. I'm going to take your advice and post the breathlessness question separately to see if any one else has experience as well. My feeling is that, like Ollie, it's a sign that Holly isn't well. My concern is that with Holly it seems to be that if she isn't wheezing the doctors don't seem to want to do anything and it's really hard to explain to them that I know she needs help. I'll keep going and we'll see what happens next.

    Thanks again

    Lianne

  • hi, my name is jo and my son who is 3. his problems started in october when he had a viral infection and had severe wheezing, coughing and was prescribed inhalers and antibiotics. we stopped after a couple of weeks as told to, but the last two weeks every time he has chased his sister home on the school run he has been wheezing and i have had to give him ventolin. i went back to the doctors monday and was told not to give him the preventor but just the ventolin at this time, today was really bad though and he was upset, i know this sounds minor after some of the other comments but i find it really scary and i am really worried about him, as like the other boys in the tail of messages he is also very active and i find myself worrying he runs now. i am back to the docs tomorrow as i find i am not getting any satisfactory help, there is no asthma nurse for under fives at the surgery, so hopefully the doctor will give us satisfactory help. i hope so. sorry if i sound over the top as like i said some of the other messages are heart breaking.

  • Hi Joanna,

    Sorry to hear your son is having problems at the moment, it is a worry however 'mild' it may seem to you it would be pretty scary for a 3 year old. Have you tried ringing the asthma nurse from here? they are very helpful and I find if I relay what the asthma uk have told me to the gp then they will generally listen. It's worth a try to phone tomorrow before going to the doctors as that way you could arm yourself with lots of fact and questions etc.

    Hope he gets sorted soon, I know what it's like with a small child who is non stop on the go. My son (3 in jan) never slows down nomatter how ill he is. We gave up trying to slow him down ages ago, it didn't work. Instead we are just on the ready with the salbutamol and atrovent (if he is quite bad)

    Good luck

    Sarah

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