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struggling with 5 year olds asthma

asthmahelpneeded profile image
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hi my 5 year old child has been on asthma pumps for just over a year. Since June she has had 4 episodes where she has needed steroid tablets. In February this year she was in hospital for 3 days due to very low oxygen. One dr decided to change her pump to soprobec 100mcg however another dr was against this. I just cannot seem to get ontop of the asthma and she dosent really tell me when she is struggling etc. in between these episodes she seems okay but I'm so worried it may happen again all of the time. I have the blue pump for emergency's but the dr won't let me have steroid tablets as a back up even tho I know a lot of people who do and they won't refer her to see a specialist therefore I'm at a lost with it all. Any help or info would be great

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Patk1 profile image
Patk1

She should have an asthma plan telling u when to increase sAlbutamol and by how much.also,peak flow meter helps. If Yr ever unsure,take her to drs.at that she they get frequent colds,which can make Airways twitchy

asthmahelpneeded profile image
asthmahelpneeded in reply to Patk1

peak flow is 120 they said that is low but that she was also to young to really do it so I shouldn't take much notice of it. The asthma plan just says 2 puff every 4 hours if she is struggling yet when she is in hospital is 10 puffs every 15 mins or a nebuliser. I think like you say it's the middle ground where I struggle with. The dr did try to refer her however it got knocked back as the hospital said all children after Covid have asthma and therefore won't see her. I find it so hard not knowing why this happens or what her triggers are. Part of me just hopes it is viral induced wheeze as they call it but she will be 6 soon so surely she is to old now for that

Patk1 profile image
Patk1 in reply to asthmahelpneeded

My 6yr old grandsons done peK flow past year & is much lower than Yr daughters.the aim whn it flares up is to get under control ASAP.his plan is 6puffs salbutamol as + when as he can be very bad.moontelukast has really helped him too x

asthmahelpneeded profile image
asthmahelpneeded in reply to Patk1

Thank you for this information. I think that is the problem as I know the puffs for emergencies and the 2 puffs day and night for the steroid but it is recognising the in between to keep her out of hospital and every dr seems to have different information as to what is right. Last week the dr said give 6 puffs when feeling unwell and the the asthma nurse said anything over 2 and she needs to see a gp which is easier said than done.

I do keep reading up about Montelukast as they have also suggested this however I seem to read such horrible stories about the side effects and depression etc

Patk1 profile image
Patk1 in reply to asthmahelpneeded

He's been on montelukast and ths asthma plan since he was 4.its b a game changer for him, with no side effects.We find he starts with frequent cough.he just plays away, but we will get him to have a drink to clear throat, if it continues,we give him salbutamol.it is often a cold or infection that triggers him& I think,possibly allergies.x

Homely2 profile image
Homely2Administrator

Have a chat with an asthma nurse on the asthma UK helpline on 0300 2225800, office hours. They are really friendly and can go through it all with you. They can also tell you when it is indicated that your child should be referred to a specialist and if applicable how to ask for it, in nhs speak.

My GP surgery is very ready to refer to a consultant, when it is outside their abilities, but has the same rules re not issuing rescue packs of steroids, while other GP practices seem to give them out more readily.

Everybody's asthma is different, but my asthma is very driven by the environment round me, particularly dust mites and pollen, so bed clothes are washed at 60, I use air purifiers, declutter as much as possible, hoover with a hepa filter, avoid my sons dusty cuddly toys etc. So keep an asthma diary for your child with all the attacks, and possible causes, also record what it is like when there are no attacks, then see if you can pick up the Asthma triggers, then you can work to mitigate them.

The asthma plan I was given by my GP asthma nurse was key to me in my early days of asthma as it told me what to do when things went wrong. Always remember if in doubt and you cannot contact your GP ring 111.

teddyd profile image
teddyd

Sorry to hear your wee one is poorly. Can I ask what is an asthma pump?

Thomas45 profile image
Thomas45 in reply to teddyd

A pump is a other name for an inhaler.

teddyd profile image
teddyd in reply to Thomas45

Thank you . I have never heard that before .

madamestephens profile image
madamestephens

I agree about making a kind of asthma diary. Also about speaking to asthma UK nurse on phone line then going back to GP with notes from yr phone call plus the diary plus Qs. My son needed Montelukast adding in age 4 to get on top of his asthma but I had be really, really specific about how it affected him: he coughs, so i had to say it had been for X weeks/months, from this time to this time overnight, coughing X times over a period of X mins etc. I think before this they thought I was a mum making a fuss about a viral cough that lasted a few weeks :/

asthmahelpneeded profile image
asthmahelpneeded

thank you for all of your help. I have been keeping a diary everytime she has needed her blue pump or medication. It's been such a bad winter for coughs and colds in our house too which has not helped. I am looking into air purifiers at the moment and I think this will be my next purchase as my other children also have bad hayfever which started at around 8 so I am waiting for that to affect my youngest also. They did say the pump she is on was quite strong so wasn't sure what to do if this dosent work it's just all the misinformation I find hard. And I'm really worried to now go abroad with her incase anything happens

asthmahelpneeded profile image
asthmahelpneeded

I also wondered if anyone asthma had got better when adding vitimins into their daily routine.

My_fairy profile image
My_fairy

Hi

Hope your little one gets better. It can happen or get worse due to a virus but make sure it’s not infection. Has she been prescribed antibiotics at all? I feel it helps with your children with their asthma is bad due to recurrent infections.

As a mother I understand it’s hard for you because she’s too young to tell you when she’s struggling but look for cues and try to check if her nose is blocked anything other than asthma itself making her worse which can be corrected.

In terms of specialist your GP can refer if your local hospital is reluctant although the secondary hospital where she attends in emergency should provide her with this but I know even in my daughters case they were Reluctant because they feel they can handle it.

If as a mother you feel she needs specialist view you can always ask GP and they can do a specialist referral. GOSH is very good for children. Although we had bad experience with Royal Brompton London Paeds but they are at the top in the UK all major hospitals refer to them once they can’t treat however, it depends on where you live. You can get advice from helpline in regards to specialist hospital closer to you.

It really depends sometimes You don’t need a specialist view but it’s always good if you meet the criteria they might be able to help you with a good individual plan specifically for her.

Gwalltarian profile image
Gwalltarian

In addition to other replies: no feather or down pillows or quilts. Wash bed linen at least once a week. You can put soft toys in the freezer for a few hours to kill dust mites. Any pets? If so keep them and their bedding clean and try and keep them out of the child’s bedroom. Ensure the little one goes to bed early around 6:30 /7:00 pm and has a soothing bath to help remove allergens before doing so.

asthmahelpneeded profile image
asthmahelpneeded

thank you all for your replies . I do all the the above in regards to cleaning etc only thing I have not done is the air purifier and also she does have a few Teddys on the shelf but perhaps they should also go. I've lost count how many hospital visits we have had I would say roughly every other month so I'm surprised they have not looked into why it is happening but perhaps there is a lot worse asthma out there. But we have no pets she gets good sleep etc l. I think it's harder as she never says she is struggling. Last month when her oxygen dropped to 85 and I could see she was struggling to breathe she was still saying she was fine etc so I feel I always miss the in between with the inhaler when I could have helped her. So now I'm just checking her oxygen every morning just to see if I can see the asthma flaring up before it turns into a hospital admission

Patk1 profile image
Patk1

Take a look on aluk website too x

peege profile image
peege

I'm glad you've had some replies. Knowledge is definitely the key.When my son was diagnosed just before 3rd birthday (he's adult now so it's moons ago) there weren't peak flows or spacers then or even the nice silicone masks that fix on to spacers (you should have been given these). So he had to learn to use both his brown preventer and blue ventolin for emergencies or before running about. To this day I'm proud of him, he did master the inhalers tg.

I'm sure if someone trained your child she could manage a peak flow meter - there are useful videos on the manufacturer's websites. It would be so useful if she could (rewards?), my daughter was told to monitor her daughter's peak flow from an early age because it's such a useful tool to know their normal, when it drops it's signal that there can be an infection brewing or at least you can monitor.

Just wishing you the very best in learning as much as you can .......have you noticed the 'Related Posts' box on this page? You can have a look to see if any posts/replies are helpful to you. In turn they'll lead you to more related posts on other pages.

Do call the helpline if you haven't already. P

Jjjjh profile image
Jjjjh

hello, how’s your daughter getting on? Just wanted to leave a comment as I know how difficult it is. My son has suspected asthma/viral induced wheeze. First admission was when he was 2 (he’s 4 now) Every time he gets a viral cough/blocked nose his breathing gets laboured and his oxygen drops. He’s on 100cl brown inhaler and montelukast, which have helped.

But I find it SO hard to know the right time to give him the blue inhaler, and when to take him to the docs/a&e. It always feels worse at night/weekends too. I can’t offer any advice but I just want you to know you’re not alone :( x

asthmahelpneeded profile image
asthmahelpneeded in reply to Jjjjh

hello thank you so much for your reply. From her last admission to hospital as she was in there for 3 days they said she could see a specialist however still waiting for that appointment. So far she hasn't been in hospital since but has needed the blue pump like you said every cold and have had a couple of bad ones where it was a bit borderline for hospital. The dr refused to give me steroids however I went back to a dr where I said I think that was unfair and that I would always take her hospital if needed however sometimes they are far away or we may be on holiday and therefore I wanted an emergency back up of them. They first said no but then I showed them a diary of her peak flow meters results that I was doing daily and how I was writing everything down and from that they decided I was taking it seriously so they agreed to me having emergency steroids which has made me feel a lot calmer. Again like you I said I still don't understand when to do the blue pump and the dr said to me when she has a cold and I feel like she isn't coping anything up to 6 times every 4 hours is fine to do and to keep her at home if she needs more then bring her in if drs is open. I have also had notes put on her records that if I ring up saying I need to see a dr due to asthma that I get an appointment straight away. I still don't feel completely in control of it all but I do feel better and hopefully once I've seen the specialist I may understand it more. Funny enough although I have lost count of the amount of times she has ended up in hospital with this she still hasn't officially got asthma down on her records. Not sure if that is normal or not as they said they couldn't diagnose until 7. Also I got nowhere trying to get an allergy test so I'm hoping the specialist may agree or send me somewhere official as such as I'm happy to pay for it but there seems so many tests out there that I do not want to get a cheap one that shows misinformation about her allergies.

Jjjjh profile image
Jjjjh

We don’t have an official diagnosis yet either, they don’t tend to diagnose before 5 I’ve been told, but could be later now due to covid. We’ve seen a respiratory consultant once last October and have another appointment in June. I found it kind of reassuring to be under a specialist but his approach was very much wait and see what happens.. I was hoping for more support. He wanted to discharge us but I said no.

I was scared to try montelukast but haven’t noticed any negative side effects, maybe a short temper (but hard to tell if that’s just a normal 4 year old!) but overall the benefits outweigh the risk. We’re very good with taking his preventative meds now and never miss a day. Like your daughter he is fine in between- it’s only when he has a viral infection he struggles.

He’s got one currently and I’m counting the days that he’s been coughing 😣 and watching like a hawk for any signs that he’s taking a turn. We’re on day 13 of a bad cough. I took him to the doctors last week as i felt he was working harder to breathe even with 6 puffs of blue every 4 hours, they gave him 3 day course of steroids. That ended on Wednesday but his cough has got worse again in the last 24 hours, he isn’t showing any other warning signs yet, but I’m getting ready to take him back in and have started his blue inhaler again too.

It’s so stressful. I’m constantly anxious and have realised that I need more help. I’m planning to see my gp on Tuesday as my anxiety is starting to overwhelm. 😪 x

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