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Kay1

Giving redipred very frequently ok?

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Kay1

Hey all,

 

Not sure where to put this. DS2 is 5 and for the last 18 months - 2 years has had episodic croup and ongoing coughs etc. We have been to a respiratory paed who I lost faith in because he continued to treat him for asthma for months when it wasn't helping at all and other doctors kept telling me they were sure he doesn't have asthma.

 

Anyway he gets a croupy cough approximately every 3 weeks. As advised by my GP I give him redipred when I hear it start. The times I have second guessed myself we've ended up having to call an ambulance in the middle of the night, he's been given adrenalin and ended up on a course of steroids anyway, with much family distress and upset.

 

Anyway I hate giving it to him so frequently. :( I gave him some tonight and it was only 2 weeks ago he last had a 3 day course. I am unsure what else we can do though as the episodes are so scary and upsetting I'm not willing to risk them. My GP says she trusts me to make the right call and to go with my instincts but I am just unsure.

 

Any advice/suggestions etc?

 

Worried Mum.

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Kay1

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Kay1

Yes, he was on flixotide and nasonex for several months. It did not impact his ongoing coughing nor prevent the episodes, even when the doses were doubled. I eventually weaned him off with the guidance of the gp.

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Tetinks

We were told it could stunt growth. That said it hasn't seem to have affected my son (who had it very frequently as a toddler) - he is now off the charts for height.

 

Can you get a referral for a diff specialist? Someone who can perhaps help you manage it better, or reassure you?

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GenWhy

Hi OP. Your DS sounds exactly like my 4yo DS. He was diagnosed with asthma at 2years of age after repeated hospitalisations. We didn't feel the medication he was on was helping him either. He was on a study for PMH as a baby where they treated him with dexamethasone. We didn't realise at the time that it wasn't the usual treatment.

 

DS did not seem to respond well to fluoride knee and ventolin daily - he would still get croup a lot and also go downhill very fast. As in, a cough would appear out of nowhere and 2-6 hours later we were at ED with him. He is now on a running script of redipred plus the inhalers and it's been around 6 months since he was last hospitalised. What we have since discovered is that pollen and other irritants will set him off very quickly. Change of weather or humidity is also a big issue for him.

 

Our paed has said the redipred is completely fine long term - he will do more damage not being on it. Our DS has very pronounced rib flaring from his asthma and the periods he wasn't on redipred.

 

Get a second opinion if you think that will help. We got 3rd and 4th opinions until we found someone we trust and DS seems to have far less issues.

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Kay1

He also had an asthma plan which included ventolin use in an 'attack' but it does nothing to relieve the breathing difficulties.

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CupcakeMumma

I'd go back to the gp with your concerns, we battle croup here from time to time, but not with the consistency of your little one. I do have a homeopathic croup remedy that I use as first port of call but also have redipred in standby as well.

 

They do grow out of it, but it's not nice whilst going through it.

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GreenEgg

Hi, i can't comment on long term use but my DD is also a constant croup and asthma sufferer and they present differently from each other in her. The last two times we have had an ER trip they said it is only a single dosese of redipred reccommended now so that might be worth investigating.

 

No other advise, but you have my sympathies!

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Guest Paddy2

I don't really know about frequent Redipred, we have used it probably 5 times in the past 12 months, but I agree that identifying the triggers may help reduce the episodes. We are in the process of this long and winding mystery tour, have been through 2 peads, ENT and are onto the second allergist. Perhaps dust for us, not sure. Anyway, I can sympathise with the ambulance visits and the stress of the turmoil surrounding this. Hope you find the answers you need.

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Kay1

Yes I have heard it can stunt growth. Thankfully ds2 is very tall for his age so I'm not overly worried about that.

 

Thanks GenWhy, are you in Sydney? I would like some recommendations of a good specialist. I think my gps (we see a couple depending on availability) are pretty good and I am not sure anything more can be done. We see an ENT as well and last year he had grommets in and his adenoids out but he did not feel that would make any difference to his cough issues and it hasn't.

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Potus

We've walked the croup path too and I'd recommend getting a referral to another respiratory paed for your peace of mind and a different perspective.

 

One of mine has had to take prednisone a lot in the past for croup and it does work well although some hospitals have moved to dexa as their protocol - which is apparently longer lasting.

 

In the meantime don't hesitate to use the redipred if you think he needs it. Mine has had a rough trot with croup including ended up intubated and on a ventilator so our threshold for giving it is very low and the docs have all supported that.

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Kay1

Paddy2 an allergist is our next step I think. With ds2 while we sometimes get a warning , like this afternoon, often there is absolutely no warning.

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GenWhy

I'm in Perth I'm sorry :( but I have been told by the consultant at the children's hospital and our paed, that the breathing issues alone will stunt growth more than the redipred will. I don't have any links for you as I'm on my phone. I did look it up (I was doing medical sciences at Uni and had access to the med journals) and remember being ok about the frequent redipred. I was concerned about it because DS was a very big baby (almost 11lbs 2 days early) yet he's quite short for his age now. I also prefer him not being on CPAP in hospital so frequently.

 

DS wasn't in daycare so the "croup" he was constantly diagnosed with was supposedly asthma but they don't like to diagnose prior to 2-3 years I was told.

 

One thing we notice is that DS eats an awful lot when he's on redipred. When we had him off all medications he didn't eat nearly as much.

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GenWhy

Sorry I should clarify - croup is rampant with kids at daycare quite often (my girls got it a lot when I had to put them in). But DS wasn't around other kids and not at daycare and none of us got croup so we used to wonder where he had caught it from. The specialist believed it was asthma all along which can present as croup. If that makes sense?

 

 

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GenWhy

Sorry I keep forgetting things to add! Our DS was referred to an allergist as well and he had a peanut allergy and pollen allergy. We were told this could be contributing to his asthma. All my kids suffer dermatitis too. We were told to expose him to peanuts a bit at a time and he's outgrown that allergy. But if he's around bottlebrush he will get wheezing almost instantly to this day.

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Therese

I would be asking for a referral to a new respiratory specialist.

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maman de singe

You have my sympathy OP - it's terrifying when your LO is struggling to breathe. :-(

My 2.5 year old DD has reactive airways disease - basically, even a mild cold puts her in hospital, hooked up to oxygen and pumped full of steroids. Initially she was on redipred and ventolin, but after several RAD episodes last autumn, her GP put her on flixotide twice a day. Since she's been on that we've managed to avoid redipred, fortunately.

I wish I had some good advice, but we're sort of fumbling around in the dark too, and just desperately hoping that she grows out of it sometime soon. I'll be following this thread hoping for some good ideas from other posters.

Good luck OP.

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Guest Paddy2

Paddy2 an allergist is our next step I think. With ds2 while we sometimes get a warning , like this afternoon, often there is absolutely no warning.

 

Pretty scary when it happens so suddenly. Last time for us was 45 mins between first cough and ambulance arriving, a stint in ICU and I am still recovering!

Hope the allergist can help you. I know it helped me when someone pointed out to me it can be seasonal (you may know already). DS usually gets bad in November and February.

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Kay1

It's all so confusing. He seems to go through this cycle. He gets croup, then has a cold with snotty nose etc for a few days which develops into a terribly loud, non croupy cough which continues for weeks and keeps him up some nights. This part seems to be helped by cutting out all sulphites and ventolin helps a bit. Occasionally it goes on so long and gets so bad that he can't speak in full sentences etc.

 

Then eventually he gets better and then hes ok for a few weeks then it happens again.

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purplekitty

I think you definitely need to get a referral to a new respiratory specialist as well,but please don't consider using a homeopathic remedy(as mentioned by a PP) in preference to effective medication.

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Mercurial

I have no experience specifically with but would like to reiterate the PPs who have said if you're not happy with the specialist, please seek out another specialist who works better with your family.

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Kay1

Another thing, the respiratory paed never saw him in an attack, or even when the ongoing cough was bad. Every doctor who did see him during those times did not feel it was asthma, he never wheezes at all.

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Sunshine streaming

My DS1 has asthma and his cough always sounds like croup. That siad it was never a severe and sudden presentation like you are describing. he also got croup a number of times. As far as his asthma goes, he never wheezes, just he cough. From 2 years old he was put on singulaire as a preventer and it has done wonders. He still gets the cough when sick, and we use ventolin and flixitide then as well, but the singulaire keeps the cough at bay mostly. We take him off the singulaire in summer and the cough comes back, but not as bad at April-Oct so we take him off to ensure he still needs the meds. Prior to the singularie we started each winter with a severe episode of asthma/croup like cough that required redipred.

 

Talk to another specialist.

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07natty

I have a 14 month old son recently been givin redipred wanting some advice as the cough is back and very dry and horsey woild it be safe to give him a littls dose just to try and sooth the cough

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seepi

No - don't give redipred for a cough. It is a serious asthma medication. Save the redipred for more of the emergency situations.

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