[Dilee-99]

Hi
My 17 month old is on a course of steroids ffor his chest 15mg per day for five days. I am aware of the numerous side effects although many only with long term use. Just wondering if anyone else has had simular age children on them and how it effected them, e.g mood,clingyness etc?
thanks dilly

 

[slinkyfish]

We have had tons and the problems come with constant long term use. A short sharp course of 5 days maximum can be a really useful treatment for asthma. Just to warn you Jack does get a bit hyper on his. Also remember to give them first thing in the morning for them to have the best effect xx

 

[Mae1]

Aww poor little man

My dd2 has Brittle Asthma and is on a multitude of drugs. She has Prednisalone approx every 4 weeks due to her Asthma going downhill.

She takes 30mg for 5 days usually but ended up on it for 8 days last week.

Her side effects are usually becoming hyper, wound up and more sensitive. Its as if all her senses are more sensitive if that makes sense

Ive just read your other post about your little mans recent possible diagnosis. Pm me anytime hun. We've certainly been where you are now and it can feel a scary frustrating place to be

 

[Dilee-99]

thanks slinky and mae so much, will come back and post properly later x

 

[Dilee-99]

Hi
phew R has gone to bed after a long day! He is definitly hyper today lol but quite fun really! He ate well and will hopefully have a better night. Not sure his wheeze has improved much just yet but sure it will x

Mae - poor you must be hard with lo on steroids etc so often! Will def pm you if I need more advice if thats ok, Slinky kindly gave me lots of info so just riding out for few fays to see what happens but I dont think this will be the end of our journey with this!

Slinky - he had them with breakfast but not happy to drink it si did add very very tiny drop blackcurrent in a glass (BIG NOVELTY) which worked well x
dilly

 

[Dilee-99]

Oh My he is hyper! running on not much sleep (its 2am) and he is the livliest bounciest little boy in town! he is hilarious if not a little disturbing of my sleep    Have noticed since yest lunchtime that he is blinking alot as though his eyes are a bit irritated, all looks ok, perhaps its tierdness x

better get back to Mr Tumble!

dilly

 

[Dilee-99]

Hi Ladies
Thought I would update and seek some more of your great advice. The steriods did the trick and although it was a horrible hyper week he was better..... sadly only lasted 3 weeks (during which time and until now he is still have steroid inhaler and reliever when needed which does help) then it was back with a vengence and after 10 days the gp put him back on another dose steroids which took much longer to take effect and was only by last day of taking them that his chest started to clear up. Following this we have had 2-3 weeks of our healthy happy boy except the sleepless nights which have just become habit waking as onve he is better he still wanys comforting at 4am (do you have this problem). So a coupld of days ago I though I detected a very slight wheeze and today its definitly there but very slight in terms of how bad it gets! I am thinking leave it til monday then is it best to ride it out and give it a chance to settle or get him treated before it gets bad? Dont think its infection as he does not spike temps but he was very clammy/cold sweat in night last night. Think he is cutting tooth aswell and has slight cold which is prob trigger for his chest.

I am worried about this vicious circle and it concerns that he wakes in the night and crys and when I go in he is wheezy/short of breath. Do you think nebulisers could help him? is there anything else the gp should be doing? would a hospital admission be of any benefit?

the sleepless nights are taking there toll and I am not in the greatest health with lots of menstrual issues and aneamia so tiredness is a cert!!!

any help advice appreciated
dilly

 

[Dilee-99]

SPELLING IS A SIDE EFFECT OF LACK OF SLEEP 

 

[Mae1]

Oh hun, its sooo hard isnt it.

How is he today?

What inhalers is your little chap on? Have you had an Asthma review with an Asthma nurse at your surgery? If not, see if you can get one asap. She'll be able to draft an action plan to follow for when ds has exasperations so its a simple step by step as to what you need to do. Its a godsend for us with Maddie.

With Maddie, as soon as we are concerned, whether that be if she starts wheezing etc or coughing violently, or even if she starts with a cold virus, we increase her blue inhaler. Obviously dont do this for your little man before checking. Maddie ends up on 10 puffs every 4 hours and often that gets her through it but she goes down incredibly quickly.

If I was you, id get him seen by a doctor. If he was cold/clammy in the night, he may well be brewing a chest infection.

A course of antibs and pred should knock it on the head if thats the case.

As far as what the gp etc should be doing- As a parent, Id be looking for a review of his meds. You need to keep a diary of what meds he has and the symptoms he shows each day. This again has been invaluable in showing the professionals what helps dd and what doesnt.

Maddie has only just (bout 6months ago) been given a nebuliser in which she uses twice a day. She uses it for strong steroids. She has 'brittle asthma' which is terrifying to say the least. She doesnt use her neb for Salbutamol (blue inhaler med) as all the medical staff agree that if she needs this via a neb she should be in hosp. However, we have Salbutamol nebules as a back up in case the ambulance takes too long and she is desperate.

As for a hospital admission, I couldnt say hun.

As for the sleepless nights....I can empathise greatly. Its exhausting   If Maddie is bad she can be up ALL night. If she falls asleep her oxygen levels dip. Its scary and horrid.

I really hope you manage to get some help. Keep going back to your GP and if this continues ask for a referal to a hospital consultant. Alot of meds, the gp's are unable to prescribe. But I really think your first port of call is an Asthma nurse hun.

Take care and keep in touch


Mae.x

ps: sorry if post muddled....tiredness alert here too

 

[Dilee-99]

Thankyou so much for replying Mae, slinky also pmed me with lots of support too! As always with ff Its invaluable to hear from others in same boat!

He is on cenil modulite 2 puffs twice a day which I have increased to 4 puffs last 3 days and ventolin when needed, prob 3-4 times per day and it helps. He is a little wheezy but still ok in terms of how bed he gets so really hoping it will hold off but not convinced. we also use vapouriser, water in bedroom etc to help him sleep. He has not been seen by asthma nurse and although gp keeps informing us he appears to be heading towards asthma he is very reluctant to diagnose because of his age but I know in my heart thats what it is. He is still eating and drinking well and not had any temps but does get clammy at night although this is partly due to wearing a cranial band!! Suspect we will be down the doctors tom for another dose steroids which seem to help but very short lived as he only well for 2-3 weeks so will push for a proper review of his meds and suggest him seeing asthma nurse at least for now.
thanks again
dilly

 

[Mae1]

let us know how he gets on

 

[slinkyfish]

Dilly - can I just ask what he is like on a normal day? Does he have days free of wheeze or is it just when he gets poorly with colds etc that this all starts up?

 

[Dilee-99]

Its really hard to say slinky in his first year he would go from a month or 2 of being fine (although I always commented that he got particularly breathless (not wheezy just short of breath) when playing alot physically with us on the bed before baths) then he would suddenly come down with really wheezy chest which would gradually get worse and on occassions with temps and being unwell and other times seeming well except his chest/breathing.

During the last 6 months it has just got so hard to tell, I think in october he got a cold/viral which then developed into wheezy chest which went on for about a month (he was on ventolin only at this point) during which time he had anitbiotics which did nothing (he also had antibiotics on a previous occassion which did not help) and finally a different gp see him and suggested starting a steroid inhaler aswell and oral steroids to knock it on the head (it was then that he said looking at his history it seems he is heading toward the asthma side of things. the steroids worked within a week he was great with only a couple of occassions where he was a little sob for about 3 weeks then it gradually crept back over a few days and got worse starting as a quiet wheeze however he was not unwell except irritable and breathless in night. After 10 days I took him back to gp who put him on steroids again and it took longer for them to kick in but they did and again he was well and not needing the ventolin at all for couple weeks then about 4 days ago when he was eating I thought I heard a wheeze and its getting worse in that it is less intermittent and does not always clear when he coughs, he is irritable and tired and does actually have a runny nose today so must be a cold triggered it off. he is eating and drinking well and usually does throughout but he is starting to cough now if we go outside/change in air temp, he will stop to sit down after running around for a bit and needs ventolin to settle. He wakes a lot in night most of the time except when he is really really well but wakes actually short of breath during the time he has wheezy chest.
so its hard to say if he gets it because he gets cold/viral but i think certanly it is sometimes that a cold/viral triggers it off but at the moment it seems to me that the inhalers are not keeping him controlled and that the steroids work as a temporary fix but he deteriorates within 2-3 weeks of finishing them. We are quite carfeful with hygeine/hand washing and he doesnt really mix very close contact with many people such as nursery however we do go toddlers, baby gym regularly but I find it hard to think he catches cold/viral every two weeks! what am I doing wrong!! Do you think it sounds asthma?, its in both our families and I suffered as a child but not at ds's age. If I leave him when the chest starts and just give regular calpol/inhalers I dont think it would clear although since the steroid inhaler the longest I have let him ride it out before steroids is 12 days by which time he was showing no signs of improvement. without the steroid inhaler (before he was given it) he was like it for 5 weeks and they kept telling me it was just a cold on top of a cold! My thoughts now are to act soon as it starts!

Am at my wits end really and to top it all off my gp surgery have no flu vaccines and he is not vaccinated and I am terrified how he will cope it nasty straine hits him! but when I asked duty nurse a couple weeks ago she said try not to worry as we are coming to end of flu season but I do worry because is that really relevent when the country has had pandemic!!

omg god just seen what I have wrote! sorry    better get him settled he is shattered x be back in a bit x

thanks girls

 

[slinkyfish]

Hi

Firstly don't worry about the flu issue. The season is indeed coming to an end and cases are dropping. Chances are he'll be fine  You are doing nothing wrong. You can't keep him in a bubble and he needs exposing to illnesses to build his immune system. However next October make sure he has the jabs 

Yes I do think it's asthma. You have a strong family history on both sides (as do we) He becomes short of breath quickly when running around and needs ventolin to help him. Also steroids help him. However it is something he could grow out of. DH was severely asthmatic as a child as was my brother and both grew out of it. DD was the same


They don't tend to label children before the age of 2 with Asthma because it can get better, however if you feel he is poorly controlled it may be worth speaking to your Practice Nurse (make sure she is asthma trained as not all are) She can fiddle around with meds and as Mae says, come up with a treatment plan to follow for exacerbations. I find the Asthma trained PN's are better and have more knowledge than most GP's (part of my old job was teaching PN's and GP's, some of them were  )


If she is not asthma trained (none of our PN's are and going there is a joke!  ) Then ask for a review by either a resp consultant or resp nurse specialist at your local hospital. As he is needing quite a lot of meds I think this is a reasonable request. You can also say you have read up and poorly controlled asthma is thought to be the cause of COPD in some adults (chronic obstructive pulmonary disease) I used that with Jack to get him onto a decent steroid inhaler    It's important these children are picked up and kept as well controlled as possible


In the mean time do keep a diary like Mae suggested and make sure you keep the house damp dusted and have hypoallergenic bedding etc. It may be he has a trigger that the hospital can test him for but in the mean time dust mite allergy is a biggy so I try to keep the dust under control (I bl**dy hate dusting too  ) Pets too can cause problems, so if you have any just keep an eye 


Hope that helps xxxxxxxxxxxxxxxxxxxxx