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Hi, just thought I would write a quick message to introduce me and my son. Nathan is 4yrs old and has chronic lung disease due to prematurity, which has been treated as asthma so far and has worked. Since Whit week, he has had a cough which has gradually got worse even though I have increased his salbutamol to 5 puffs twice a day. I took him to the docs about 2 weeks ago and even though all his glands where up and was told he probably had an infection, theyd id nothing but change his hayfever medicine. I took him back at the end of the week and the nurse practitioner gave him a 3 day course of steroids as he was getting breathless when running around but okay when not running, and he was coughing a lot more as well. He took these and was no better on Monday so I took him back to the doc who gave him some more steroids and antibiotics. He took them and was still no better, so went back to docs on Friday and he basically said that he couldn't do any more for him as the steroids hadn't worked and he would refer him to the respiratory pediatricians which we should hopefully here from soon. He did say that in the mean time if he became breathless when not excercising to take him straight to casualty. He is still the same now, his eyes look black underneath and he seems to be tired more than normal. if anyone has any ideas as to what I should do, then I would be grateful for it.

Sorry its long.

Jane

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9 Replies

Hi Janeas,

Welcome. While I am no doctor, I have been dealing with my children's asthma for the past 19 years. At your sons age, if he needs 5 puffs of his salbutamol twice a day, he should probably be on a lot higher dose of steriods EVERY DAY until his asthma is under control. If you don't get any help from your doctor I suggest you find one that will help you. Sometimes you have to be a bit nasty with doctors in order to get what you want. But it sounds to me like your son is not on the right meds or doses. Hope you find help soon.

Stevie

Hi Stevie

Apparantly the doctor said that because the steroids did not make a change to his condition, there was no point in upping his seretide as that is a steroid and it will also not make a difference. I will see how he goes, if he is no better I will go back and ask them what can be done or how soon we will be seeing the consultant.

Jane

My older son was given 3 different steroid inhalers until we found one that worked for him. Good Luck!

Stevie

thats what happened with my son, they have him on serevent and flixotide at the moment plus alternate day pred - this has really helped with his daily symptoms and we have much more control over his life - the gp may just want to wait for him to be seen by a specialist first though cos it can be a little ""unorthadox""!

Hello.

I can totally sympathise. My daughter also has lung damage due to prematurity and her asthmas symptoms are not properly under control. It sounds like your son needs a higher level of inahaled steroids to prevent the asthma.

Molly is 3 and currently on:

Seretide 100 - 2 puffs twice a day

Cromogen - 2 puffs four times a day

Montelukast - 1 tab at night

Cetirizine - 5ml

Salbutamol - as required (usually about 5 times a day at the moment)

Your son sounds very similar to my daughter at the moment - her colouring is not very good, her eyes are dark and sunken and she has been given antibiotics.

I would say that if you are really worried then there is nothing to stop you taking him to A&E where they will montior his sats etc and be able to see if there is anything more sinister happening.

Annie x

Hi Annie

How prem was your daughter? Nathan was born at 24wks and has never been under a consultant for his chest. I really don't know what to do at the minute with him as he is still only getting breathless when he is running around, but seems to be really tired all of the time, which is not like him. As far as I know he is sleeping at night because he isn't coming in to wake me up which is what he would do, but a couple of people have said that he may be waking up but not properly (like having a bit of sleep apnia). Do I just wait for the referal appointment to come through or do I try to get him seen by someone sooner? I can't cope at the minute with him because he has behaviour problems anyway, but he seems to be getting worse at the mo obviously because he doesn't feel right and doesn't know how to tell us. I am sick of being hit and kicked at the minute or having clothes and toys thrown at me.

Jane

Hi Jane :)

Molly was born at 28 weeks and is also under a consultant at the hospital. She has never been discharged so they see us every couple of months but to be honest I am not finding them particularly helpful.

Molly is awake a lot in the night coughing which accounts for her tiredness. If you are worried then I would make a fuss. Maybe you could call your consultant's office/hospital clinic and explain that he is an ex-prem and ask to bring the appointment forward.

If he is really out of breath and lethargic then just take him to the hospital A&E and tell them you are concerned.

Annie x

Sorry - I mean the consultant who he was under when he was born!

Hi

The consultant that he is under is a general consultant for prems or kids with ""problems"" and the centre in the local hospital. I phoned up the other day to ask if she could fill out his dla forms for me and was told that she was going to Iraq for a few weeks and wouldn't be able to do it, so I doubt that I will be able to get an appointment with them. If I took him to a&e, they would just look at me strange unless I took him late afternoon, because for some reason, when he is ill he tends to go hyper more than normal.

I'll see how he goes and if no change see what my husband thinks to us taking him somewhere else.

Jane

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