Keelan has his second appointment with the consultant coming up and I'm trying to write down all the questions I need to ask and was wondering if anybody could give me ideas?
Keelan is 17 months old and yet to be officially diagnosed with asthma because of his age. Although since he was 7 months old his had 9 admissions, 5 resulting in visits to HDU and once PICU and was fully ventilated. These visits have usually been treated with nebs and pred as well as IV aminophylline and magnesium. Day to day his uses Clenil, Ventilin and antihistamines as hayfever seems to be a trigger. Sorry I'm going on but thought the background may help.
I've got a few questions so far but would be grateful of some help
Not really sure if I can give you any advice re questions. I'd just ask whether he was on the right medication to control such severe attacks. Has he had any tests done for allergies or other conditions involving lungs? Maybe ask whether they can look further into the triggers etc.
What did the cons do on his first app?
When is this next app? Sounds like you've really been through the mill with your little man. I so hope the consultant can look into his condition further and give answers.
Massive hugs,
Emily x
Hi Emma,
I'm so sorry that you've had such a rough time with your little one. I hope that you can start to formulate a plan so that you have more control and Keelan has a better quality of life!
The questions that I always want to ask my consultant when I see him:
- Am I on the right medications at the right doses?
- Is there anything that we can stop?
- Is there anything new to add?
- Can I have a written plan so that I know what to do at each stage of deterioration (e.g. increase preventer medication and antihistamines, start oral steroids, go to hospital)? This should also give details of what you need to look for to show that Keelan is deteriorating (as he is probably too little for reliable peak flows?)
- Will you arrange with the local ambulance service so that they know about Keelan and can make it a priority if you ever call 999 for him, and they can know to take him straight to resus, for example
- Will you write a protocol for the A&E department so that they know to call the paediatric respiratory team and PICU team for input, and treat aggressively in the meantime
- Is there anything that we might be missing - e.g. allergies, other triggers?
That's all I can think of for now, but if I remember any more I'll come back!
No his not been given any tests previously, and his last app he was just given clenil to take daily and ‘see how that goes’. Since then his have two more admissions both resulting in treatment in HDU. Since the last admission his been taking antihistamines as well and they seem to be helping. He hasn’t had a bad attack but he seems to be getting wheezy when playing more often than before.
This appointment is in two weeks but I want to be prepared as last time I came away still feeling lost, being new to motherhood, asthma and regular hospital visits has been very overwhelming.
I think allergy testing and a pass straight to the ward (after a bad experience in a&e) will be things I definitely ask for.
Thanks Emily, any ideas are greatly appreciated
Emma x
Oh thank you Wishes, those questions are great and will also give me some peace of mind if I know those plans are in place for when Keelan takes ill.
How about asking for a trial period with Montelukast granules. This can be really effective if allergies are a trigger. X
Oh Emma, I can only imagine how you feel, being new to motherhood and now having to learn all this medical stuff as well. You've really been thrown in at the deep end, haven't you?
I think that a pass for direct admission to the ward is a great idea, but make sure that there are written instructions about what needs to happen for Keelan when he gets to the ward, so that there is no chance (or less chance) of him being left without treatment because the ward is busy or because the staff don't realise that he needs treatment immediately.
Sending big hugs to you - this will all become second nature in no time, but feel free to ask for help any time you need it - we're all here for you!
Wishes
Hello. I too am a mummy with a little man with a wheezy chest. Fortunately we have avoided picu but have had a few admissions.
He started monteleukast due to allergic wheeze and it has really helped. We use antihistamines as and when needed along with salbutamol and clenil.
I totally understand how u feel but you are doing the right thing going armed with questions. Make sure you write the answers down. following one of our appointments i was totally overwhelmed and forgot everything.
Definately a gd idea to get your local hosp up to speed so on admission you dont get overlooked. Sadly we had this situation and it made everything so much worse.
We r having allergy tests in a week as we already know that he has a lactose and milk protein intolerance so the hosp seem to think he is likely to have further allergies.
Little man is 19mnths and thriving so i am very lucky. He has a few other health ossues which we are being refered to great ormand street for.
I posted before about the fun of being a mummy. Still laughing daily at the ups n downs. Good luck at yoir next appointment. Chell.xx ps of you are unsure about what they tell you ask them to explain it again until you do. Doctors at xlinic must thonk i am abit crazy the amount of times i ask them to repeat!!
Thanks for all your support, you know what they say a problem shared………
I will also ask about Montelukast to see if this is another option to get his asthma under control.
I’m definitely picking the medical stuff up quickly and Keelan is a cheeky chap so motherhood is a pleasure that I’m enjoying every second of, although very eventful at times.
Chell, has your little man been told he has asthma? Did you consultant organise the allergy tests?
Thanks again I’m feeling much more prepared now
Emma x
I remembered something that I wanted to add to the list I wrote before, but it's completely slipped my mind now. Fiddlesticks!
Oh yes, I was just wondering whether it might be worth trying to avoid any foods as potential triggers. It's a relatively easy thing to try, but might make a difference. It's much easier to try things like that with the support of a dietician...
Wishes, sorry to sound completely stupid but whats the best way to start looking for food triggers.....
Are there foods that are more likely to be triggers? Just so I have an idea where to start
Thanks x
more likely food triggers are nuts and dairy produce
x
Hello emma. Soz for late reply just dont know where time goes. W has not been diagnosed asthmatic but they have told me its very likely. When he was born at 32 weeks he was ventilated and had cpap so the first few episodes were put down to prematurity. He then got brochiolitis at 12 weeks and from there on it has been referred to as reactive airway disease. Due to being symptomatic for three months following a chest infection they introduced clenil and monteleukast. He had some test done when he was very small as he had issues with reflux and nappies that were indiscribable!! Hence the lactose and milkprotein intolerence diagnosis. He now has quite bad skin and seasonal allergies so the hospital think he has issues with pollen. He has had bowel issues since birth and now they r investigating a cause. One of the tests is allergy testing amongst many others. Gp has been rubbish throughout. In someways its a blessing that he was already under the hosp consultant because he was prem. Although sometimes i wonder if things would have been different if he had gone to term. Heyho. He is still perfect and a monster all at the same time!!! hope things r ok wirh u. Chell.xx
Chell, sounds as if you have really been through it with your little monster, our boys like to keep us on our toes.
Thanks for all you comments feel much more prepared to quiz the con at keelans nxt appointment
x
hi emma,
Thanks for this post very intresting reading. Singular has been fab for Martha, If she refuses to take it (which is worse when she ill and wont eat) but she had a few days where we couldnt get hold off it and within a few days she was wheezy again with no triggers.
Hope your app has gone or does go well. Keelan must only be a few months older than Martha shes a march baby
natasha
The cons went really well, although he had to be admitted since when he got a cold but a few nebs and a course of pred later his back on track.
Yeah keelan is slightly older his a february baby
Emma x
Glad your app went well. Sorry to hear he been in hosp again though.
did they start him on singular?
hope he is well at the moment. I had to take a day off work today . Just about to phone the asthma nurse as not had a reply to my email. Dreading tonight as she stopped the pred today.
Nat- just a thought- my little girl always needs a 5 day course of pred. 3 days is never quite enough. Maybe the asthma nurse would be happy to give her a couple more days? Maybe worth asking.
Hope you get to spk to her soon and your little one is on the mend x
Hi,
No he was given singulair, just carrying on with the medication he is already taking.
I'm really beinging to dread the winter with Keelan just getting his first cold for a few months, I'm on tender hooks
Hope you and all your kiddies are well
x
Hi
sorry emily i didnt see your reply. I think she would off been better off on 5 days but we managed it.
I to am dreading the winter Emma. Esp RSV has already been about :(.
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