really fed up :-(

My son is 4 and of late has been suffering loads on steroids and antibiotics as well as two inhalers and granuels, his excema has now flared up around his mouth and he hates the antibiotics he has to have 4 x aday he has an asthma review on wed this week but there isnt a fully trained asthma nurse in his dr just wish i could make it all better for him

[Thomass_mum]

I can relate to how you feel Thomas has been the same (without the eczema) he's had loads of flare ups with his asthma over the last 5 months and despite stronger meds just feels like we still don't have a solution.

Does he see a consultant? If so, could you not ask for his appointment to be bought forward?

X x

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He was under the hospital consultant but hasnt seen him for ages since the last time he saw him josh has been on loads of steroids,antibiotics and had a nebuliser machine home from the dr on quite a few occassions , since september he has been on his inhalers most days also school have had to give it to him lots im gonna ask for him to be refered again like i said no qualified asthma nurse at dr so feel like im getting nowhere hope things improve fore your litte man x

[Thomass_mum]

I wish our consultant/GP would allow us a nebuliser machine at home or at least an emergency course of steroids. We have been refused both because Thomas deteriorates very quickly and has been in HDU because he didn't respond to nebulisers so think they worried if they allowed it I would leave it later to take him to A&E as symptoms masked. Could you not phone paediatric outpatients see if they will see you without a referral as you have been seen previously. Thomas is seen every 6-8 weeks at the moment so can't moan about that just feel its not h under as much control as I would like. What medications does your son have? I have never even seen the asthma nurse at the GP surgery they refuse lol.

X

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He is on blue ventolin inhaler upto 10puffs at a time also a seretide 50 evohaler and granules in the night and now on antibiotics again my kitchen cuppboard has 2 shelfs of his medicine , he has had asthma since a baby and had phenmonia of the lung which has caused a weakness when he is feeling good he is so full of energy but of late he has been very tired and on the sofa most days will let you know how we get on wednesday hopefully good he loses weight all the time and there isnt much of him to start with bless him x

[Thomass_mum]

Frustrating isnt it with the weight we are now having to see a dietician as they are not happy with his size. If he is wheezy or even off colour he quickly goes off his food so they have given us these fortini drinks but he doesn't like those either and refuses them so doesn't really help either.

From what you say I think its definitely worth getting him back under consultant care, hope you can get a referral quickly. So unfair to see little ones suffering.

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Thanks for reply its good to talk to someone that understands , bless ur little man seems like he has a rough time of it , it is really hard to see them poorly isnt it Josh is such a happy little boy with so much love to give it doesnt seem fair for him to have all this going on , and its just me and him so sometimes i have to set alarm to go off every hour to give him his meds or just to check on his breathing hence why wednesday cant come quick enough

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If you remember your little boys consultants name I'd ring his Secretary at the hospital and explain the situation. Consultants are quite often happy to just see patients again when there are issues.

X

[Thomass_mum]

How did you get on today? X x

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Hi sorry of late reply Jenny P well inhalers increased dose and now need to a peak flow test morning and night although on here it says not to use a peak flow meter unless child is 6 or above and josh is 4 anyway appointment again in 2 wks if not improved will be refered back to hospital consultant , as with teeth worry the nurse was rude and said to me ""well piroritys dear we need to get his breathing sorted first"" i understand that but what kind of mum would i be not to worry about the reaction on teeth since starting seretide inhaler

[Thomass_mum]

Thomas's teeth have actually started to look a bit better than they were so not sure if some of it may have been temporary discolouration from the antibiotics as someone suggested.

We have consultant tomorrow, this should be interesting. When Thomas was put on the latest medications they said it would be ok as they assumed it would be temporary until the adenoid removal. Well as adenoids not a problem love to know what the action plan is now. I'd rather he wasn't on such big doses of the inhalers it's awful he has to have 3 puffs of seretide 125 per day and he's not even 3 dont know what else they can do though. Can hear him coughing away in his room, wonder what the next week will bring for us the dry asthma type cough is never a good sign. Also have respiratory nurse tomorrow so ill try asking her about it see what her take is, see if anything else we can do to prevent teeth probs. what a ridiculous woman of course you will worry any responsible parent would!!

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Hope the increase settles josh. Fingers crossed.

Hope tomorrow goes well Jenny.

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Hi jenny hope it all goes well 2moro let us know ,thankfully josh's asthma seems to be getting a bit better also the anitbiotics are sorting out his excema on his face so fingers crossed it all keeps getting better hope all goes well hun xx