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Toddler with viral asthma

ANT039 profile image
29 Replies

so my little girl (2.5 years old) has viral induced asthma. She's gets a chest infection every 3 weeks or even more regular for the last 18 months. We have her seeing one of the best consultants in ireland and he is hoping she will grow out of it (with support of various medicines obviously) but my question is more about does anyone know any support groups for parents of kids with asthma. Both me and my wife are struggling mentally with both working and the sheer regularity and stress of the whole situation. Thanks in dvance

29 Replies
floating_ profile image
floating_

Has your daughter had immune system testing? Sounds like there's something going wrong if she's getting that many viral infections!

Bevvy profile image
Bevvy in reply to floating_

Just to reassure ANT039 it isn’t that uncommon for young children to be getting regular infections. They are building up their immunity levels and often are mixed with other similar age children at (for example) nursery and bugs spread amongst themselves. Any cold etc is triggering asthma symptoms. As she gets older her natural immunity will start to fight off cold and similar bugs so she won’t trigger asthma as often.

One positive is that in England often doctors won’t diagnose asthma until child is much older (4yrs?) so the fact she is receiving treatment and has a diagnosis is actually quite positive.

ANT039 profile image
ANT039 in reply to floating_

yeah but we are going to get them to do it again when she is booked in for a bronchoscopy in 4 weeks for them to be sure that nothing else is wrong

Amberquinn profile image
Amberquinn in reply to ANT039

good luck with the bronchoscopy, we were there 2 weeks ago. If its in temple street the list is fridays, we were told fast from 6am and then fluids until 11am for the afternoon list. I was in a bit of a panic as to what to do, they did advise to wake up early but then i would have had a child awake from 6am who potentially wouldn't eat for me anyway and then was grumpy and tired.

I know every chilchild is different but i fed him as late as i could, i know its not ideal but i got him some chips as i knew he wouldnt say no to chips (so a food they love) about 9pm evening before so i knew he was going to bed full and content albeit a later than usual, then i let.him lie on (maybe sienna is an early bird) and we woke and then went straight on to dublin after dropped older kids at school, obviously lots of distraction involed and they allow clear fluids until 11am, but the car journey was busy and then we were there and he was distracted enough with the attention.

Staff were lovely went down quick enough, quite emotional, even though its a simple and safe procedure still they are small and vulnerable. Was out for 430pm.

We made an appointment to see the consultant the following friday (again he does his clinics on the Friday) and most of the results were back from the washings they sent and all were negative. (Barr tb which takes a few weeks to come back) gold standard testing for anything lingering around, which is a reassurance.

Bit detailed run down, but again i knew no one who had been for one and what to expect or even how to approach the whole fasting situation. So thats how i approached it and it all worked out grand, of course he has his expected huffs now and again, nothings a walk in the park with kids 🤪 but he was absolutely fine and he is a bit older and able to communicate with me and was fine after. No complaints of sore throat ect

We were told there was a chance he could spike a temperature that weekend as they squirted water in to withdraw to send the tests and it could stir up naturally lying bacteria so have some calpol on hand at home (we dont do nurofen here because it affects chest ect) but he was grand no fevers.

Again any questions just ask! Walking the same road!

Amberquinn profile image
Amberquinn in reply to Amberquinn

they also said anatomy was fine and everything looked good airway was normal size. I was surprised and relieved because he has coughed that much i was convinced he had to have done some damage from all the force constantly expelled on his airway ect but no, no long term damage which was a huge relief moving forward one less intense worry put to bed slightly!

ANT039 profile image
ANT039 in reply to Amberquinn

Thanks for that Amber - its nice to know how the procedure goes. Im actually going to send that on to my wife so she knows too!

Redrose90 profile image
Redrose90

My toddler is being treated for Suspected Asthma because they can’t officially diagnose because of his age but after our last admission to hospital in August, I found the Asthma Uk nurses on the helpline really helpful. I really struggled to deal with it and deal with him going back to nursery and although I don’t think anything could totally put my mind at rest, it did help speaking to them.

ANT039 profile image
ANT039 in reply to Redrose90

Thanks that good to know. I may try them!

BlueHut profile image
BlueHut

I’m sorry you’re going through such a worrying time as a family. It’s so hard. I’m afraid I don’t know of any support groups other than this forum, I’ve searched in the past as well. There really should be better support for parents of children with asthma. I’ve suggested it to Asthma UK before and I will suggest it again. Good luck and all the best for your daughter!

ANT039 profile image
ANT039 in reply to BlueHut

yeah I have looked and couldnt find any - which is shocking really considering how common asthma is!

Amberquinn profile image
Amberquinn

hey, we are based in monaghan, i have a nearly 4 year old boy, for the last 2 years we have endured cough after cough, it has been so stressful and worrying. 2 years on we have had full allergy testing at allergy ireland in dublin which was all ok, several chest xrays, blood tests and a bronchoscopy with testing for lingering bacteria/viruses. All have come back clear, yet we have had a rough 2 years. We are on the brown inhaler the highest dose for his age, singular sachets and steroid nasal spray and ventolin when needed.

It has taken this length to understand he has a type of cough variant asthma that is triggered by viruses. The sound of a cough induces so much anxiety in me because we have had to listen to him suffer. We had a 5 week break over the summer, no coughs, heaven. An improvement on the 3 weeks last summer.

This all started when he was 2 as he was at home with me for the first year of his life and when he was to start the crèche lockdown hit. When he did start in December 2020 then this became a massive problem.

We also saw a consultant in temple.street who has just discharged us as all investigations for anything major are ruled out. It did break my heart as i feel so helpless and it just seems neverending and it is so so disruptive all night when its at its worst and like you, we seem to run on a cycle of every few weeks. I did think it was an immune thing but there are over 200 viruses and a simple runny nose to one child turns into a full blown coughing session with a course of oral steroids. And he otherwise is a healthy developing well boy! Its very upsetting to watch and exhausting when its every few weeks.

Like you both i dont know anyone else personally who has a child to relate too, and the consultant told us also it would be something he would grow out of, that it would continue for another few years and should get slightly better each year. I hope so because last winter he had oral steroids nearly every month. He also reassured me that he saw many children presenting with the same issue as ryan, its just so hard when you dont know any of them as im finding it mentally hard to cope with, but hey, ive done 2 years hes still ok and otherwise well, i just feel so uncomfortable and helpless when its a neverending cycle, wondering what im doing wrong or what am i missing that could potentially help him.

Ryan doesnt get the typical wheeze just a persistent hacking cough that is relentless. I have tried a multitude of things to help support his body we have been to naturopaths, herbalists, osteopaths (he had several ribs out of line from coughing so much) environmental changes...you name it ive drove myself up the wall trying to find something to help.him, its hard to accept they will just grow out of it in time.

It is very stressful and has dominated most of my thoughts and life for the last few years, its so upsetting when you get over one bout and only a few days later the escelation starts again and you know whats coming, or they sneeze and you think "aw no here we go"

I totally empathise with you. And im glad i saw your post i have trawlled the internet but have never seemed to find anything relatable. Your definitely not alone we are struggling over here too. Im a nurse and work nights which have been a help as this far in i know hes not going to get really acutely unwell respiratory wise as its been going on for so long but i dont sleep a wink at home listening to it feeling sorry for him (my husband sleeps through anything always has) so i either escape to work or sleep downstairs with white noise next to my ear to try and get some sleep, but still the nerves ways there. This is the reality of the situation, not ideal but its the only way we have got through these past 2 years. Im hoping this winter is slightly better as we were told. Hes already coughed his was through September with only one really really bad cough but i felt it didnt warrant a doctors trip. But its hard to listen to day in and day out.

Im so glad i came across this post. I would not wish this on anyone but it sounds so familiar to my current situation its just a bit of a reassurance your not alone.

In regards to coping, i still get so wound up even though major problems have been excluded it still feels so unnatural.

If you have any questions you can ask further not sure im a great source of advice as weve been going it alone the last 2 years blindly trying things to no avail, but we are still here 🙈 surviving!

ANT039 profile image
ANT039 in reply to Amberquinn

Thank you so much for you reply. I can really honestly relate to much of what you are saying. Last night Sienna was sick every 7-10 days. Since March this year it has slightly improved to about every 3 weeks. And same as your son she is developing well is every other way (which is great), but this constant barrage of colds that turn into coughs that turn into wheeze/rapid breathing. And im the same, the minute I see a runny nose, my stomach just tightens and i strap myself in for the roller coaster of potential hospital visits, broken sleep drom doing the ashtma discharge procdure and also just trying to work when this is all going on and copartmentalise your worry so you can function. I can see at least 2 other people here that have the same issue. I would be on for setting up a support group via email/whatsapp if you are interested and there is literally no supports out there for parents dealing with this. Let me know if you are.

Amberquinn profile image
Amberquinn in reply to ANT039

absolutely either email amberfrost18@hotmail.co.uk or mobile 00353877148850, it is not easy, sometimes takes away the enjoyment of parenting and you feel slightly robbed of the time, i wish these past 2 years were different and looking back they have been a nightmare and even the present and thinking about the future even though your told they will grow out of it, the next few years are filled with apprehension and i feel a bit robbed by it sometimes, envious of others who arnt experiencing it with their kids, and then a guilt because there is always much worse. Maybe i sound totally dramatic 😜 but its just a bit of honesty!

ANT039 profile image
ANT039 in reply to Amberquinn

thanks amber - i have that saved now. Let me see if the others come back and ill set something up. I can totally relate to feeling a little robbed or worse even, feeling that you kid might not get to experience their childhood to their fullest sometimes!

annam83 profile image
annam83

Hey,

I don’t know of any support groups for parents but I really wish there was one! I’ve also searched in the past as I feel like I really need support from others in the same situation. So please know you are not alone in struggling emotionally with your daughter’s asthma.

My son (4yrs old) also has viral-induced asthma and, to give you some hope for the future, it is slightly improving as he gets older as he isn’t getting ill as often. For a number of years he was constantly ill with coughs and colds, triggering his asthma, it felt like he didn’t even get over one before the next one hit. On the many occasions we ended up in A&E I would speak to the consultants about there being something wrong with his immune system, but was constantly told that unfortunately this was fairly normal.

It is stressful, and frightening and emotionally draining, and causes me great anxiety. BUT we are seeing a reduction in the viruses he picks up so as he is getting older, so I do feel hopeful this will improve in the future.

I can’t offer any help re. support group, but just offering solidarity - I know how hard it is to parent a child with asthma. My heart sinks every time he gets a cold as I don’t know where it will lead, and we have to constantly over-analyse his breathing and asthma symptoms when it flares to decide whether a trip to A&E is on the cards.

It’s horrid, I get it.

Amberquinn profile image
Amberquinn in reply to annam83

aw im sorry you are experiencing this but thanks for posting and sharing because it helps to know others are also experiencing the same as unfortunate as it is, and as much as we all hate to be here and have no real answer just to sit it out, accept that its something they will grow out of, its just pretty miserable for everybody in the mean time 😔

ANT039 profile image
ANT039 in reply to annam83

Thanks for the reply and its good to hear that you do see improvements over time. It hard though as its a huge emotional drain as you no doubt know on the parents aswell. Maybe its a male thing (probably isnt!) but i struggle with the helplessness of it all. Even though we are doing everything that we can you always start to feel are you doing enuff as your kid is still get sick

LeahLoo profile image
LeahLoo

hi all, I am going through the same with my 15 month old son. I’m glad I found this thread. Maybe we should start a support group! We haven’t had asthma diagnosed as he is so young but we have had constant viruses and then wheeze and breathing difficulties since he started nursery in May. 10 trips to A and E in a couple of months is mental torture. I have awful anxiety and can’t concentrate in work (when I’m there! As son is off nursery A LOT. I am from Northern Ireland and have just been on the phone to Parentline NI who have signposted me to a few places, but more to help with dealing with my anxiety about my son. It would be good to find a group to share experiences and solidarity when times are tough.

ANT039 profile image
ANT039

Hi Amber - I would 100% be on for setting up a whatapp group for this if your interested so sharing any tips/stuff or just having someone who understands. I mentioned it above to amber too but if you interested let me know, But I 100% understand your stress. My wife takes sienna to A&E most times. She reduce her week to a 3 day week (from a 4 day one) in order to help lessen the impact of the constant sickness. I work from home all the time aswell - so all the sickness can really impact a person the longer it goes on for

greyseal1 profile image
greyseal1

Hi Ant

I'm so sorry to hear your situation. My youngest is 12 years old and has had the experiences you describe since he was a baby. He wasn't diagnosed until he was about 5 with asthma due to his age and missed much of pre school over winter. I worked freelance to fit in with his needs and the quality and number of hours I could commit to working was impacted by his ill health and I missed out on income regularly. My experiences mirror those of the other parents who've responded and I would agree support for parents is woefully inadequate. Given that much of the problem is at it's worst at night time, it is extremely stressful and isolating for parents and I'm really sorry you and the other parents on this thread are suffering too.

Asthma UK nurses have provided the most helpful service and informative suggestions for us. From a practical point of view, pre school we reduced the number of groups he attended so he would be less likely to pick things up. I also had him vaccinated against chickenpox, which can be done privately but not on NHS as UK don't provide it to children as part of the vax offering as they do in US and many other countries. Obviously you would need to do your own research / analysis, but may be something to look into.

We've tried to build up his lungs through playing sports, running, football etc. The asthma inhalers (once we had them) made a huge difference in those moments of crisis. A&E trips are not the inevitable outcome of viruses any more and we manag symptoms at home more often now.

With symptoms often being worse at night time I understand how frightening and isolating it feels. I'm not sure people appreciate just how much of a problem lack of sleep and chronic stress is on families in this situation and have never felt completely satisfied with the answers given by professionals. I never really felt he fitted in a standard asthma profile with asthma being an umbrella term defined by symptoms rather than causes of the asthma. Does anyone else feel the same?

I have spent many hours on the internet desperate for answers. It surprises me that there is so little when there are so many asthma sufferers worldwide. Recently came across a research study wrt immune mediated illnesses and asthma, which is something I would like to understand more. It could be a part of the jigsaw. The language of these studies is massively challenging to understand / open to misinterpretation, so would be great to find someone who might be able to help interpret the findings in academic research like this. I would be interested in joining a group that would maybe share resources like these / try to find people with these skills to help? Researching is a coping mechanism for me, it helps me feel that am doing something in the hope it may help inform better decisions, so I would be interested in looking for answers.

I hope some or any of this is of use. Good luck.

ANT039 profile image
ANT039 in reply to greyseal1

HI - thanks so much for sharing. if even 1 other person on the thread says they are interested is setting up the group Ill actuall share my email with you and get your numbers to set up a whatsapp group. Im sorry to hear about what your family has been true. The lack of any supports even to talk about this stuff is crazy. We have the inhalers and they do help a lot but obviously before the age of 5 they wont diagnoise asthma (which i have no problem with), so at the moment it feels like throwing darts at the dartboard with a blind fold on and see what helps and what doesnt.

greyseal1 profile image
greyseal1 in reply to ANT039

Good luck it sounds like you're doing everything you can to help your little one.

Iawmp profile image
Iawmp

Hey Ant, if you need one more...theres one more right here. Our 21month old son thomas been up and down since march. Prescribed predesilone twice in sept for example.

Seeing specialist Temple St end oct. Had hoped this might be our salvation. But from what everyone is saying, we need to gear up for the long haul.

ANT039 profile image
ANT039 in reply to Iawmp

I hear you! We go to professor Greally in the hermitage for qtrly visits. He is also the head of paedritics in tallaght hospital I believe. He's basically the main man for asthma is the country and he is very good. If you planning on seeing a consultant I would recommend him

Iawmp profile image
Iawmp in reply to ANT039

great to know. We are seeing Dr Hensey in Temple St. (got the appointment after the kid was admitted in June) Will see how we get on with Dr Hensey, then might look at getting in touch with Dr Greally. the asthma nurse recommended him, but we already had the appointment with Dr Hensey, so never pursued the other referral (which we should have done). Our GP hasnt really been much help TBH, and we haven't been pushy enough with them.

ANT039 profile image
ANT039 in reply to Iawmp

yeah hes the main man here anyway. Has literally written a book on asthma called "childhood asthma". The GPs are useless to treat this. We were talking to them about the treatments that prof greally were giving us and they had never heard of them. Usually the only thing they will do in my experience is either (a) tell you its viral and send you on your way (b) give you an antibiotic which usually does nothing. Where as greally wlll persribe lots of different things to help manage it. Worth a look if it continues on for you your wee lad (hopefully it wont)

greyseal1 profile image
greyseal1 in reply to ANT039

Sorry to jump on the thread, that books sounds interesting - have you read it and if so would you recommend? Thanks

ANT039 profile image
ANT039 in reply to greyseal1

just bought it 2 weeks ago so still making my way through it. However its already quiet handy for just understanding asthma in general

Amberquinn profile image
Amberquinn

Just jumping on to wish you all the best for the scope which might be upcoming soon, hope your all doing OK, we have had several bad coughs this past month one running into the next but so far no steroids and manageable if not anxiety inducing and stressful all the same 🙈 hope all goes OK

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