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Recurrent croup and asthma

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My sons aged 5 and 7 have suffered from severe recurrent croup since being babies with regular hospital admissions and dexamethasone steroid treatment. They haven't had a proper diagnosis of asthma however they are both on clenil and ventolin which I have no idea if the clenil is actually working because I find it hard to distinguish between an asthma attack and a croup attack now. Sometimes they don't have the barking croup cough and the ventolin settles the attack when struggling to breath but upon seeing the gp they says its the croup which just confuses me.

The croup/asthma is always brought on by a cold or virus and my oldest son has a constant cough which worsens if he is active or laughing. The cough has been so bad at times that his teacher has rang me to pick him up because hes disrupting the class.

I have no support from our gp or asthma nurse if I ask questions they say I need to ask the opposite person so I go back and forth between the two with no answers or management of it.

Does anyone elses child get croup alot? I feel mentally exhausted and have started to become irrational. I constantly worry and think they will die and lie awake at night wondering which one will wake up struggling to breathe and then.theres the mad dash to hospital. Even when.they are not ill I am anticipating them being ill so I never get any rest.

Its resulted in me having severe depression, amxiety and.panic attacks and I have given up my job as an accountant due to this and having so much time off.

I just don't know what to do to get this under control there doesn't seem to be a time when they are completely well.

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23 Replies
Clarefraser profile image
Clarefraser

Hi

Do you know I have dealt with this for years with my son. Although he is asthmatic medical staff would often say its viral, he has croup. Then one day I arrived on the children's ward after phoning and saying we were on our way (he has open access) only to have the same thing said to me, its croup. We were sent home and told to return six hours later as the medication he was given needed to be given six hourly and had to be administered on the ward. I told the staff that his asthma can often sound like this but it then changes into more of a typical asthma cough and I was sure it was asthma.

They were so convinced it was croup I accepted it (after all he has had croup in the last an the cough did sound croupy). So we went home, we were only home about 30mins when my son suddenly went into a full blown asthma and actually asked me to get him to hospital quickly, terrified we jumped in the car and drive back. The hospital staff were shocked and how quickly he had gone down hill and agreed it was an asthma attack he was having. The croup cough had gone!!! A few weeks later we saw a consultant from a another hospital as I wasn't happy with our own consultant care. I explained to her about him often sounding like he has croup and the fact that I was often fobbed off because of it. She said that he had a floppy airway and the reason his cough sounds like a bark is when he is really struggling and his airway is finding it hard to get any air out and you get this barking noise. I was so relived that finally someone understood what I was talking about and at least now I am able to tell other people why he is barking.

I hope you get some answers for your son, it would definitely be worth mentioning this to someone because potential it could be so dangerous!

my son zak has been having croup since a baby along with chest infections he was diagnoised with asthma afther a life treating attack last year he is 4 now and in reception i would keep on for the longest time the docter would say we cant say for sure that its asthma but once he had a mayor attack they had no choice

Hi all,

I am very interested to read your posts as we have been going through this since my 5 year old was 6 months!

I hope you dont mind me saying that it is a relief/comforting that other people are having the same problems as we are as I was starting to feel like a fake and that it was in my imagination!

Our son had his first croup attack at 6months. The GP (a very poor one) said to me 'it's croup, it lasts and hour' and sent me off. 2 days later he still had croup. Since then he has current every year normally in the colder months but as you know in this country this can last a long time. Every year we have been told that he will grow out of it. These episodes have become more and more difficult to manage and get better.

2 Years ago september he started with a bad cough and still had it 3 months later. At this point they said it was Whooping cough and gave him and inhaler. 2 weeks later we had to take him to A&E as he had a croup attack. They were great and gave him the liquid steroids which was like a wonder drug on that occasion and he was a different child 20mins later. they also said to come straight in in future sio he can have this medicine. As time has gone on it is less and less effective and he has to have the tablet steroids as well.

The inhalers didnt seem to make any difference with him, he had a croup attack anyway. A year ago we were referred to Paed clinic and this march he had an MLB to check for a narrowing of airways, this was ok. We back to Paed clinic who say he has a sensitive immune system, an ear infection lasts 4 weeks and 3 lots of antibiotics, and were also referred to asthma nurse.

She has been fab and asked whether we had videoed him having his attack. I admitted that i had thought about it every time!! She asked for peak flows for 2 weeks and literally 2 days later he had another croup attack. I knew it was going to happen and had my phone ready to video him. His peak flow dropped to 60 over these days. He is on Clenil again now and we are due back on monday to see asthmas nurse. He had another croup attack sunday and is still poorly with it.

How is eveyone getting on with it? Have you found any good ways of managing? Ours tend to happen when the weather is cold/damp, in the early morning, he coughs until he is sick and he has to have so much time off of school.

Hope to hear from you

Kayrick23 profile image
Kayrick23 in reply to

My son is 2-1/2 it all started aug 2016 he started coughing and would cough so bad he would get sick so I would take him to the dr oh he just has a cold this went on for a while then I would take him to urgent care they would say the same thing one at the age of 2 he has already had 3 chest X-rays finally one day we went to the urgent care I said to the dr that he has been doing this for a year now she ordered another chest X-ray and gave him a breathing treatment and listened to him afterwards he sounded so much better. Before this last visit I had taken him to see an e-n-t they took out his adenoise but during the routine surgery there was a problem he went into a bronical spasem they sent him to the emergency room after that I went back to the dr back to urgent care then called the Pediatric pulmonology I had to fight with them to see him with our a referral so now he’s on flowvent and Albuterol it seems to help

Hi! We're in the same boat back and forth to hospital with croup attacks, given nebuliser, dissolvable steroids, clenil, ventolin only for it to come back we're on night 7 now scared to go to sleep ?

Maamukti profile image
Maamukti in reply to

I have the same problem, my son is 7. There are old posts, could you please write updates? Does it go away? What did help you?

Elishalayla profile image
Elishalayla

My daughter is 9 and she gets this a lot, I am sick with worry it never seems to completely go away we are under specialist treatment but nothing seems to be working. She was fine up until a few years back a healthy normal life style, I am at the end of my teather. She has hay fever also that is hit and miss, I have purchased a air purifier/humidifier this makes no difference. Her breathing can be so bad that she can not even laugh at times its preventing her from doing activities with her friends and it just breaks my heart to watch her go threw it all. Her peak flow can be as low as 70 her tonsils are always inflamed and the go usually just send us away with steroids or nothing at all.

I'm wondering if anyone has any idea on what I can do to help her and prevent her from catching these virus

Lozloz14 profile image
Lozloz14

I am in exactly the same boat, my son has had croup 8 time this year, currently going through the 9th and are 5 days into it.

I am so worried and anxious at the moment as I am everytime he gets it.

His gp is useless, Drs at hospital are useless too.

Asthma nurse for first time next week by I am so scared he's not gonna make it they he is right now, sounds daft but his attacks are so bad I'm just frightened.

Anyone got any advice?

LTP223 profile image
LTP223

Hi :) My Son is 2 and Since November last year we have been experiencing the same problems with no answers from the health care professionals. I noticed this thread and just wondered if any of you have any updates or success with doctors and managing this condition? Thanks in advance :)

Rach100 profile image
Rach100

Hi have just found this thread after speaking to my GP today. We have 2 children a girl 5 and a boy 2 who keep getting recurrent croup. Myself and my husband are both in the ambulance service so are used to seeing children with both croup and asthma. both my children seem to get 2-3 episodes of croup a year when they get a cough and cold. They have very typical croup type symptoms, slight temp, the barking cough and a stridor noise when breathing and their symptoms are always better during the day. We always assumed this was croup but my GP phoned today to say that she had spoken to a paediatrician as she thought the kids shouldn't keep getting croup as frequently and it may be asthma and the paediatrician agreed. we've now got to keep a diary of symptoms to see any link. Is there any update on anyone else and how you have got on? Really hoping the kids don't have asthma but obviously don't want it going undiagnosed. thank you

Tara_CB1 profile image
Tara_CB1 in reply toRach100

I read somewhere that recurrent croup (known as spasmodic croup if I remember correctly) can be linked to allergies. It will be a good thing perhaps to get your child tested for any allergies and see if there may be a link there? Good luck and I hope you and your little one get to the root of it.

nicki82 profile image
nicki82 in reply toRach100

Hi, my daughter has been going through the same thing all her life and she is 81/2 now we are always told its just a virus Id like to chat with you about your kids symptoms if possible

Rach100 profile image
Rach100 in reply tonicki82

Hi Nicki yes feel free to chat about your little girls synptoms, we have a Drs appt in a couple of weeks to discuss the diary so I may have more info then.

My daughter is 5 with chronic croup and since september she's been in the emergency room every month and December and February twice ,they give her the steroid treatments every time and a couple times at her doctors office ,they decided to remove her tonsils and adenoids,on April 10th,she had the gastrointestinal doctor do a biopsy on her esophagus,stomach and small intestine to see if she has acid reflex and allergies ,all came back negative.they did find out she has narrowing of her right side airway into her lung,now she has to get a m.r.i and has to see a lung doctor,she's missed so much school,this past Monday was her second episode since the surgery,her e.n.t gave me predniso for home so we didn't have to run to the e.r every time she got an episode.tuesday night into Wednesday morning I had to give her a dose of predniso ,and sit on our porch for the cold night air to help out ,didn't work as good as the medicine they give her at the e.r ,but she's had so much of that medicine I'm afraid it's either going to hurt her or not work because she has had a lot of it.she had a doctors appointment this morning they took more blood,and for me to keep her home from school tomorrow.so frustrating not knowing what's going on with her.

ketteringjack profile image
ketteringjack

Hi all - interesting thread.

My son is now 4 and a half. He had his first bout of croup when he was about 1. Since then he has had 6 trips to the emergency department and 3 admissions to the children's ward overnight. We have also treated him at home with a steamer (with an inhalant) and plenty of fluid so I suspect in total he has had about 15+ episodes of croup.

I must say the staff at the hospitals have been superb and he is always treated immediately with the steroid "Dexamethasone" or Dex as the hospital calls it and has, for the last 3 trips to the emergency department had the adrenaline "Epinephrine" through a nebuliser. It is a shame that for recurrent croup parents are not given Dex to administer at home.

We have now been referred to an ENT specialist for further investigations as the hospital advised these episodes should not happen as much. I will post an update once we have seen the specialist.

Lynn82 profile image
Lynn82 in reply toketteringjack

Hi Ketteringjack. Just wondering how your little one is now? Going through similar with my 4 year old X

Katlav profile image
Katlav

Hi all

Wish I had joined here sooner! My son is nearly 4 and he's had croup 18 times & currently on his second dose of Dex for his 18th attack!! I could write a book! We have exhausted every avenue via NHS! Athsma nurse gave us clenil & salbutamol inhalers but GP thinks it's a case of growing out of it however I do have dex on repeat prescription thank god! I pushed for allergy testing too as he does suffer with viral croup but I do believe a lot of his attacks have been allergy related also! GP wouldn't refer me for allergy testing so I went private turns out allergic to most things I suspected... dog,cat,rabbit hair, trees, grass cuttings, pollen and randomly cod the allergy specialist recommended we stop using the inhalers as told us they're probably doing more harm than good if he's even taking them properly as said if he isn't breathing it in properly it's likely to be doing more damage to vocal chords! We are under an ENT specialist who performed an endoscopy a few months back and during procedure discovered he had floppy larynx so removed some of that to open airway so we really thought he had been cured but literally two weeks later another croup attack he's now recommended he has 5ml of a second generation antihistamine daily which after three weeks sent him crazy horrific tantrums foaming at the mouth so took him off that (cetrizine) and he's now trialling another one then after three months of him being on them if still having attacks (which he is) he is then to try a reflux med as they found acid reflux on vocal chords during endoscopy so he then needs to try that medication for three months and if we are still experiencing attacks he will then be referred to respitory specialist for further tests from them! I am also exhausted & sick of suffering the anxiety and anticipation of the attacks coming on and 3am dashes into the night air with my child barking & struggling to breathe!!! Then the aftermath of the irritability off the steroids it's an awful vicious circle!

Hope this info helps some of you anyway!

Tconnor profile image
Tconnor in reply toKatlav

Hi

What’s the outcome of this did they get to the bottom of things?

Justjools profile image
Justjools

Hi,

Just been googling croup as my youngest daughter gets it a lot, I have just seen the doctor who advised that to help prevent recur at croup to give child lifeline powder, it's multi vitamin drink but also has selenium in that he said this mineral in our food is at such a low level we need to add to our diet along with big c that will help the immune system cope with viral illness.

It's worth a go I think! I will certainly try it with my daughter.

Bellabells profile image
Bellabells

Hi all!

Could write some of these posts!

My nearly 4 year old is now on her 22nd episode of croup (that we have actually counted ) first episode was when really tiny (like 1 or 2 months old) middle of the night, stridor & croupy cough which was gone by morning. I don't think she got it again til maybe 1 year old. Now she gets it often. In between she gets viral wheeze attacks often needing a lot of salbutamol via inhalers or often nebulisers and oxygen resulting between the 2 in a lot of a&e attendances and several 2-3 day stays in hospital. We've dialled 999 3 times now I think.

She's been under ENT who did a bronchoscope which was normal and her allergy tests were normal. Her vaccine response required a second pneumococcal vaccine which she's had.

She's on Clenil 2 puffs twice a day and paeds have commenced monteluekast powders to give acutely i.e. When she gets snotty and give for 2 weeks they say although we never have so far as she's better after a few days.

She has croup this eve. We have a bottle of dex at home so she's had a dose and it's worked like magic. Although she's lay next to me with noisy breathing right now and I fully anticipate her to be wheezy and tight chested tomorrow.

She's well in between.

I wish I knew why and if I could prevent these god awful scary nights when she gets it! No signs at all today just a day at nursery then woke me with that barking cough and stridor.

I know some want to diagnose her with asthma but I'm not convinced.

She's has no atopy ie fine with animals no hey fever no eczema no family history and house not damp etc.....????!

Lizthompson profile image
Lizthompson

Hi there! I have been reading all of your posts regarding recurring croup. My son who is now 11 has been having croup episodes for as long as I can remember. Every time he was given steroids (oral and breathing treatments) but this only seemed to be a "bandaid" to the symptoms. I wanted to share with all of you that my new pediatrician (3 years ago) advised us to put him on a once a day Claritin or Zyrtec during the spring and fall months when these episodes occur the most frequently. We have had 1, yes only 1 croup attack in three years! His was allergy induced croup so what worked for us may not work for all but I wanted to share something very simple that has changed our lives. I wish you all the very best and I hope this may be of some help.

mariacap profile image
mariacap in reply toLizthompson

Hi thanks for sharing. How were his attacks? Did he had runny nose cold prior and then developed into croup suddenly at night or how?

ROKSTONE profile image
ROKSTONE

My son and I have spent two days back and forth to a and e . we have been told he has croup as he had what seemed like an asthma attack last night. We were given the nebuliser and it seemed to calm things down until tonight at nine when he woke up screaming. He was boiling hot with a temperature of 39 . They think it’s croup as he has a bark of a cough. He is always congested and I think this is all linked to his allergies. He has been tested privately for allergies and suffers from allergies to peanuts, eggs, dairy and sesame. I have noticed more restaurent are using peanut or seasame oil so perhaps be wary of even French fries as a treat. We are at a and e now waiting to be seen so fingers crossed but it’s good to know I’m not the only parent visiting a and e over 12 times this year.

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