Warning before I start this may turn into a bit of a rant....
Thomas was last admitted just before Christmas (his 7th hospital trip since beginning of August). It turned out he had a lower respiratory infection and discharged the next day with a 5 day course of pred and a 10 day course of co-axoxiclav. He seemed to be getting better until yesterday when his breathing again took a turn for the worse and overnight seem to be suffering with a croup bark type cough which was really scary. That seemed to have gone by this morning but was still having to give him 8-10 puffs of the ventolin every 4-5 hours. He wasnt what I would consider ill enough to need A&E as we were managing but something didnt seem quite right so decided to take him to the walk in centre. Well what a joke after a 2 hour wait I was practically told Thomas's asthma means he is too complex for them to treat! He wasnt that wheezy as we were seen just after I had given him 6 puffs of the ventolin but he did have crackles on the right side again so they were just going to give me an antibiotic. I protested and said he needs pred (no way i was going anywhere without it!) so after speaking to a doctor they agreed but they have given almost half the dose he usually has and only 3 days worth instead of 5. I didnt realise the walk in centre was now a nurse led service. So in future my only option for the weekend im guessing is A&E, would feel such a fraud taking him in for this, if it was a week day I would just go to the GP. This nurse seemed to think hes got brittle asthma? First time anyones said that, is that right?
Its so frustrating he only 2yrs 10mths and is on Seretide 125, Nedocromil, flixonase, Montelukast and Ventolin. Yet still he seems to be getting wheezy. You would think with all that medication his breathing would be more under control. He seems to catch anything going his immune system seems to be non existant. Do many people have an emergency course of pred at home? Thomas's consultant wont allow this.
He was meant to be having his allergy testing this week, yet again that is going to have to be postponed. Next week he is due to have his operation I need him better for that we have been waiting so long.
Sorry for the rant, I just feel so fed up he gets given more meds but still dont seem to be getting far.
Jenny x
Written by
Thomass_mum
To view profiles and participate in discussions please or .
Dont you have a local out of ours GP service? Usually if you ring your surgery out of hours they give you the number for the OOH GP service if its not run by your local surgery..?
I never use walk in centres, they are hopeless. If its not requiring an ambulance I use the GP OOH service x
Jenny has he been assessed for reflux? It causes constant inflammation in lungs and infection if he is aspirating. When I raised the head end of our bed between 30 and 45 degrees my lung problems radically reduced. It wasnt until I was referred to Papworth that the reflux was discovered... x
I wish I had thought of that. The ridiculous thing is the OOH doctors is in the same place so unless you are ill enough to have them come out to you, you see them at the walk in centre.
They have discussed reflux but decided he doesnt have that.
He went from using 2 puffs twice daily of clenil over last winter stopped that in March, then onwards only used ventolin occassionally. Then in August was put onto Clenil again 2 puffs twice a day and montelukast, a week later admitted again and the consultant upped this to 4 puffs twice a day. Then in Octobers appointment after another admission was changed onto the seretide and carry on with the montelukast. Then after another admission in November was put onto the Nedocromil and flixonase in addition to the seretide dose increased to two puffs in the morning and carry on with montelukast. Its such a lot for someone so small. Are many people seen by specialist hospitals? Are there such a thing?
Hi Jenny
Forgive me for being picky with them but how did they 'decide' that he isnt refluxing? Many have silent reflux as I did... The way to find out is by 24hr monitoring of the PH in the oesophagus, this records if gastic acid is backflowing into the oesophagus. This was the cause of my recurrent pneumonia and terrible asthma. The simplest thing to do if they wont entertain further discussion about it, it to try raising the head end of the bed at least 30 degrees. Papworth said I think about 80% of their respiratory referrals have unmanaged/untreated reflux and a high percentage of these are silent refluxers ie not aware of it.
There are specialist hospitals - Papworth (near Cambridge) where I go is the largest dedicated heart and lung hospital and takes referrals from all over the UK and channel islands. But I dont know if they see children.. He is on a huge amount of meds and I can understand why you would be questioning his management and wanting him to be seen in a specialist centre.
TBH I have no idea how or why they have decided that. It was bought up by a registrar at one point but the consultant said it wasnt that and not to start the medication. His operation is to remove his adenoids as they are enlarged and blocking his nose so he constantly mouth breathes which they believe makes his asthma worse too.
I just go to the local hospital for Thomas's appointments and do trust his consultant and he has been fab, BUT, considering the deteoriation in the last 5 months am starting to wonder what if. He also works at the Evelina Childrens Hospital.
I know how frustrating it is when its my own body and the meds keep piling on without really achieving full control. I can only imagine how hard it must be as a parent watching your own child. I don't have any advice beyond what has already been offered, but did want to let you know you are heard.
As for the walk in clinic or even the out of hours doctor. In my own limited experience I've noticed that doctors are reluctant to do very much when they see a case of difficult uncontrolled asthma that is clearly being medically supervised. Unless it is an absolute emergency situation, they will do the minimum and provide counsel for how to get through until one can see one's regular doctor. Perhaps that is why you only got 3 days of pred? Perhaps they are assuming you will see your child's doctor as soon as possible?
Also some people use the word 'brittle' loosely to mean anything that is difficult. Unless you have a formal diagnosis as such, I wouldn't read too much into it. Asthma can be difficult and complex without being brittle.
Well took Thomas to see my regular doctor who has decided I should just stick with the 3 say course of pred and antibiotic I have been prescribed. I just hope its enough because if he's not better by Friday they will cancel his op. I just feel really stressed out he has 3 days to improve. On a plus the doctor couldn't hear the crackles or the wheeze this morning but I am still giving him a lot of ventolin regularly.
I have everything crossed cos I really want this op to make the difference people have said I can't deal with worrying all the time anymore. Everything seems to come all at once in our household lol. I am now waiting for a referral to fracture clinic as turns out the X-ray I had done at the end of November indicates I may have a stress fracture on my foot. And there was me thinking I was being a hypercondriac
oh bless you thats all you need!
Oh Jenny
We have the same trouble with walk in centres. If its anything to do with anything even remotely airway related they won't see him. Some ooh have been great, others less than helpful. We only get anywhere with his GP. He never gives us less than 7 days pred (when he needs it obviously!) as anything less just doesn't clear it. We've only learnt that through experience and tend to just accept that ooh and sometimes even a&e will only give us what we need to get us through to seeing our own gp or his asthma nurse.
Nursefurby makes a good point and it might be worth asking about the reflux route. It could be that has multiple things all contributing to making his asthma bad?
Really hope he's better soon especially for his operation.
Well tomorrow I have got to go to the GP have his chest listened to any wheeze or crackles and the op will be cancelled. He's not great this evening so I am a little worried. He has his consultant on 29th so I will ask then about the reflux.
Turns out there is definitely something with my foot, they not sure whether its break it fracture as need MRI. Now waiting for that but the wait is about 4 weeks. It's all a bit of a joke I can't understand what they are going to bother doing by that point it will be well over 3 months since I did it. He couldn't give me any advice on what to do or what they will do as apparently it all depends what shows up on the mri. All he's advised is to try and rest it I'd love the chance it bloody hurts but too much to do.
X
Hi Jenny,
I'm so sorry your little boy is still having such a tough time, it reminds me of the situation we were in this time last year, although not to such an extent as you.
Leo's consultant insists that we have a 7 day course of preds at home for Leo, to be replaced by the GP as soon as it is used so that we always have it to hand, which is great. He has also granted us open access to the children's ward, meaning that whenever Leo has any asthma symptoms that concern us enough that we don't feel we can handle it at home or without medical advice we just phone up and tell them we are on the way in. This applies even if he doesn't need to be admitted as they have a triage system so are always happy just to check SATs, nebulise him etc and then make a decision from there as to whether he stays or goes home. The hospital is 20 mins away from where we live but at least they know what to expect when they know he's coming in. They never make us feel like we are wasting their time and it saves the worry of whether to go to out of hours, call an ambulance or go to A&E etc.
Maybe you could, therefore, ask your son's consultant if he could have open access at your hospital?
Good luck and I hope he get to have his operation and that it all goes well.
Again I have asked about open access to the way but they have said they only give that to the most severe complex cases we are not allowed a course of pred at home either as if he is ill enough to need that he needs to be seen by GP or in A&E. I think they have decided because he is under 3 and deteriorates very quickly he needs to be checked over and his chest listened to.
It's crazy how different things are from area to area isn't it? Our GP wouldn't allow us to have preds at home for the same reason, yet the consultant said he must have them so he can start them at the first sign of problems, even if he also needs to be seen, as every minute counts when the can deteriorate so quickly. That was his thinking and it has worked for us so far but it really is down to the opinion of each doctor at the end of the day.
Is there another hospital in your area that you could enquire just to see what their open access policy is? It might be more lenient like ours, although we weren't given it lightly but just because Leo had 5 visits to OOH, needing nebulisers and preds and 4 admissions on top of that in a very short space of time in the 18 months leading up to July last year, so I think he got the access because they knew his pattern and knew that if he went to OOH they were likely to just send him in anyway.
I know it can be a faff changing consultants, etc but it might just be worth looking into and then if it doesn't weigh up just stay where you are.
Anyway, how is he doing today? I hope he's not too bad.
He seems ok today, I have had him checked and his chest is clear so as long as no major deteriorations his op should be going ahead
I am reluctant to change hospitals as his consultant is very good. If we go to A&E they are good most of the nurses know us well from all the visits in the last 5 months. I can understand why they don't want us to have steroids at home. The admission before last Thomas was rushed into HDU after 6 hours on nebulisers as they weren't making any difference and he ended up on IV salbutamol. In between the admissions we have had several courses of pred from our GP who is happy to do that as long as she has had a good listen to his chest. I am going to give the OOH doctor a go next time rather than the walk in centre.
It's a bit touch and go he still isn't right but with no pre-op we will get there Thursday morning and find out whether or not the op will go ahead. Makes me so cross because I told the walk in centre and my GP that I didn't feel the dose of steroids was right. And tbh I don't think the medication was right either because of previous experience but they are the doctor.
Hoping your little boy stays well enough and that the operation goes as planned and with good results.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
x
How much better should I be at end of pred course?
Totally getting fed up now 
