Hi, I haven't posted for a while. My 14 year old so has been under specialist care and on medication for asthma since just before he was a year old (with a a few years somewhere in the middle where everything was nicely under control and discharged from the hospital).
He had pneumonia around three years ago and feel like we have not got back to being in control of his asthma since, there have been several medication changes and his long term general paediatrician referred him on to a paediatric respiratory specialist around a year ago after a few admissions in close succession (they did this ince before for a year or so when he was 3 and they thought he may have CF). He is now on ciclesonide, seretide and montelukast daily but still dont seem to get him in a good place for more than a couple of weeks before something causes him to flare up again.
He was seen by his consultant in October, when his lung fuction was at 55% of expected, they were close to admitting him but allowed us to go home with a course of oral steroids and a follow up for 1 month time. The consultant commented how stoic he was and stressed that if we needed to come in we should relay that and that when hed been seen by his consultant with that lung function his wheeze was not bad and Hayden 'appeared much more well than would be ecpected'.
In his November appointment his lung function was back up in the high 70%s he was having a good week but seen again in December and it was back down in the 60%s, was put on another course of oral steroids and he perked up for the first week or two of January. He had been back to waking most nights to use his inhaler and first thing every morning, he think he needs to use it during the day two days out of three and then almost every evening.
He seemed to have another flare yesterday, hed used it 3 times by the time he went to the medical room at school at 11.30 and was still feeling tight chested.i managed to get him an emergency GP appointment and he is back in oral steroids (3rd time in 5 months).
I know we are trying to get home adequately controlled on the lowest dose of preventative medication possible but I dont feel he is adequately controlled. I'm comfortable when hes in front of me as know I can respond as needed but hes 14 and so not in front of me much and I know how stoic he can be, it worries me sick 😢.
He us due to be seen in the respiratory clinic next week but by an asthma nurse this time not his consultant. I'm not sure if I need to be a bit pushy, I absolutely dont want him on medication he doesn't need to be but really want him to be well and certainly dont want to feel like he is a ticking time bomb which is a bit how it feels at the moment.
Sorry that's an essay and not sure I know exactly what my question is but any thought or advice would be very welcome.
Thanks for reading and in advance for any support.
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HaydiesMum
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My advice is to write down everything that’s going on. How often he’s using his blue pump on average then highlight that he’s been on x rounds of steroids this year. I’m not sure if you’re at a tertiary specialist respiratory hospital but if you’re not you can ask for a referral to one because you don’t feel like they’re on top of his care atm and resp spec hosps have more drugs available to them (such as biologicals etc). If you are then it may be worth asking where to go from here. But as I said the best you can do is record how he’s feeling, how much vent/pred he is requiring and state that he’s not feeling controlled and then ask what more they can do and if injections would be an option for him/for further referral.
Ps also meant to say... 4+ steroid courses in a year (whilst on max therapy) is enough to be eligible for biologics. I’m on maintenance prednisolone and have a Plethora of drugs to try and combat side effects so it’s worth pushing off referral now and not at my stage...
Thanks EmmaF91, how do you know if the hospital is teritary specialist respiratory Hospital? It is a big territory hospital and he is seen in a paediatric respiratory clinic?
He does respond well to the oral steroids just dont feel like we are ever on top of it for more than a couple of weeks at the moment. We had a good chat at his last appointment about the balance of having him well enough controlled whilst keeping side effects to a minimum especially whilst he's going through puberty but not convinced we have that balance right yet.
Will try and keep notes, hard when he's quite independent with his meds for the most part but think you are right it's what we need to do.
Usually a tertiary centre isn’t your local (tho ofc some are), and has a waiting list the hosp doc usually puts you on to be referred there. (I know with adults you have GP (primary) who refers to local hosp (secondary). Then local resp con refers to resp specialist (tertiary). Usually people who go to tertiary hosps are aware they are there. Depending where in the country you are you’re looking at hospitals like Addenbrookes, Papworth, Leicester, Royal Brompton, Guys/St Thomas, Southampton etc etc. But if he is at a tertiary hospital it is most likely a spec hosp he is at... google the hosp name and respiratory specialist and see what turns up 😅
Try sitting down with him and being frank. It’s his body and he knows what’s up with it. So work together and come up with a plan/record. And try to reiterate a controlled asthmatic has no symptoms, does not need their blue pump, and can do the same as their peers (without having to reach for pump/call 999). But if he can say ‘ok today I did x and needed to take pump y times. Yesterday...’ then it’s just a case of getting it written. You don’t have to track him, and if he can’t remember just record ‘about x puffs maybe cause y’. And if he really can’t remember set him a task to record just this weeks usage before seeing the AN. But going back over the number of pred courses he’s had in 12 months and then highlighting how much bent should highlight he needs more (cause leaving it unchecked can lead to further issues and possibly make it harder to treat later on).
Thanks, yes we are at Southampton it is our local but a big territory hospital. His general paediatrician had to refer him to his current resporatory specialist to prescribe the ciclesonide I think.
Hes quite good at relaying on the day so just need to get in a routine of jotting it down each evening I think. He'll probably not be too bad at his appointment next week due to the oral steroids hes on now which is good but not great in terms making the point hes been pretty rubbish all winter if that makes sense.
Silver lining at least the school seem to have taken on board how unstable ge is currently and being much more reactive! 😂
You’re possibly seeing a spec resp doc, but they may be wearing a local resp doc hat (it sounds odd but it is a thing 😅).
Oh yes. I get the frustration! Being on the drugs that mask the issue can make them think there is no issue! Just tell them that it’s his x course of steroids since Feb last year and that he often struggles and uses vent so you don’t think he’s meds are balanced correctly yet and think he needs more. I’m not sure what type of asthma he has (atopic/eosinophilic/non-eosinophilic etc) but it definitely sounds like he needs more than he’s currently on. And maybe treatment for a comorbidity would also help (ie if he’s allergic - daily antihistamines, if he gets reflux - anti-reflux meds etc etc) if he isn’t already on them. But there comes a time when you as parent and he as patient has to be blunt and drop our british politeness... tell it how it is and let the cards fall as they may.
I am glad he’s school are on the ball with it all now and are hopefully helping him out now too if he needs it
Thanks for replying. At 14 life insurance isn't an issue. You are right they work quickly and well for him just think the regularity hes needing them means increasing his preventative therapy may be worth pursuing.
I have raised two boys , now grown with serious asthma. I also have issues. I swear that nuebulizers are best. When they were little we put 2 squirts of beconase AQ steroid nasal spray in the nuebulizer cup with the albuterol or intolerance or whatever was prescribed. This was from the head of US F medical center before it was legal to use the spray steroids. It saved his life. No more steroids pills which I’m sure your know have horrible side effects in children. Make sure you know what peak flows are and how to use them. Very helpful. Also. The American allergys asssocistion has great products. What are his triggers. Mine are dogs and dust mites mostly. I have a service dog but I treat the carpet for dog allergen and dustmite. I refer the product from amazon about 14.$ every 3 weeks. I use dog shampoo from the allergy association. About 12. $. I have two Levite’s air filters also awesome. It’s work but it works and I can Jeep my dog. And though I take allergy pills I don’t use the nuebulizer much anymore unless it’s grass season
Thank you Bjkjc, we used to have a home nebuliser when he was a toddler but they dont really seem to like you using them at home on the whole here in the UK anymore. We've been told if he needs a nebuliser he needs to be in hospital, plus get the message 10 sprays of ventolin through a spacer is as effective (not sure I agree on that, especially when you are so short of breath).
He has several (loads) allergies but they are mainly mild (apart from cats which we dont have and he knows to avoid like the plague). He seems to suffer when the weather changes which is pretty much a daily occurrence here for most months of the year and as soon as he picks up a virus it goes straight to his chest.
Sorry to hear he struggles so. Nuebulizer Use is pretty common in US. 10 puffs in a spacer ! Wow. Never heard of that. Can you change doctors if this one isn’t working? My boys were on nebs q 4 and meds until they got about 8. Had tounciland one also had nasal polyps and adenoids removed. Then a short period of inhaler until about your sons age. They got very tall after that and the asthma demised. I suspect there’s some trigger your missing somewhere. How about humidity? When the heat is on the air dries out and coughing begins. I have to run the humidifier all the time inside. Good luck. It’s awful to watch your child suffer. Mine started doing triathlons and running when they got better. They’re 6’4” and very healthy at 28 and 30. The older one has completely altered his diet and doesn’t do processed food, fast, food, soda,etc. and is more athletic then nerdy now. They do grow up. Also allergy covers on pillow and mattress no stuffed or real animals. Was bedding once week 170 degrees or above. There’s also allosearn laundry soap on amazon that kills all alllergens.
Hello HaydiesMum. Sorry to hear your son is having so much trouble with his asthma.
I've had asthma since a toddler and in my experience not every asthma medication has suited me and some even made my asthma worse.
It's important that a review of how well a medication is doing after first introducing it, say 4 to 6 weeks. Hopefully this was done after introducing each inhaler and tablet.
A simple way to test the efficacy of an inhaler is to take a peak flow reading then take the inhaler, wait 15 minutes and retake the peak flow. The PF results should improve, if not then you can question the efficacy of the inhaler. Re testing the steroid inhaler, PF should remain the same but if it gets worse then tell the Dr. Doing these PF tests before you see any asthma nurse or specialist will help identify any problems with current meds. There are a range of meds and a change may help.
Has your son been checked for aspirin allergy? Any sensitivity will mean a change to dry powder inhalers in order to avoid irritants in the wet inhalers. Sometimes these allergies don't show up until puberty or later. Something to ask for.
Hormones can play a part in changes in asthma control and at 14 your son will be bang on track - a good time to review what asthma medication he needs now for his teenage years. It can be a challenging time.
Inhaler technique is another important thing to consider - getting as much meds down into the lungs is vital. The asthma nurse should regularly check the patient's inhaler technique.
I agree totally with the other posts - a total review with a respiratory specialist is necessary. And go armed with the info that they'll need to address any medication changes. As well as how many times your son is taking his blue inhaler, is it after eating or exercise or at times he's sedentary? These clues will help identify triggers he's now experiencing.
I'm often reminded how cyclical asthma can be - annoying when you think you have things sorted then bang, something comes along to upset everything. Sometimes it's like starting over. But the sooner we tackle changes, the better.
Your son is very lucky to have such a great mum - you've definitely got his corner.
It's all good fun isn't it, we have had so many med changes over the years but does seem to be taking a while to get things right for him this time. He is having regular spirometry he just seems to bounce about so much.
He hasn't been tested for aspirin allergy and hadn't heard about the need to move to dry powders, hope he hasn't as cant tolerate the dry powder inhalers, it all just seems to get stuck in his throat.
They are hot on reviewing his inhaler technique, he always uses a spacer which definitely helps.
Going to keep a good log and see where we get. Thanks
That’s a sorrowful story, I can relate to all of that, no doubt he gets emotional when you comfort him or he sees sympathy from others, that never goes away. I was on 40mg of prednisalone daily for 2 years, I did put on weight in that time and came out in spots and boils, the benefits outweighed the side effects. That was 40 years ago, He will get totally used to living with it
Thanks Philgn. Hes so good about it and pretty stoic most of the time but it does get to him, he just wants for it not to have such an impact on his life.
Hes tiny at the moment (both height and build) towered over by most of his friends so weight gain isnt a massive concern but they do effect his sleep and temperament which isnt nice.
Thanks for the reassurance he'll get used to it, just wish he didn't have to.
I was smaller than my friends up until I was 16 then shot up a foot, I could never play games at school or do anything that was moving faster than a walk. I think the emotional part was the worse. His chest and back will ache when he has a bad attack, rubbing his Back will make him feel better, arms above his head holding onto something like the headboard will help. The older he gets the easier it will get. I was diagnosed at 18 months old, I’m 76 now and have had a good life,I still get embarrassingly emotional at times. The preventative medicines are improving all the time. You have been told that 10 puffs of ventolin inhaler is on par with being put on a nebuliser if the attack is bad, check how often in a day you can do that. Wishing you both well.
Thank you. I keep telling him he will probably shoot up at some point, his brother is 4 years younger and only an inch or two shorter and they wear the same size shoe which I think irratates him.
Yes he does get uncomfortable and worn out when he is having a flare up, it's the only time I get loads of cuddles now. Will remember the headboard tip!.
The 10 puffs at a time thankfully isnt a really regular thing and if that doesn't last 4 hours before hes needing it again we head straight to A&E (unless hes just come out of hospital and we are in 'recovery' phase). To be fair if he needing the 10 puffs it's a good sign he either needs to be seen or has been.
Im only 20 and I have had stints of 40mg pred for 9-12 months for the last couple years. Although it SUCKS and he will gain weight it’s better than not being able to breath. I found it hard to process initially that I wasnt very well but I’m sure he is thinking about it internally, just encouraging open communication has helped me loads.
If he ends up on steroids for long periods like I did definetly worth questioning doctors about other options. That’s what I’m doing rn and hopefully I won’t need any more steroids after I sort this. Hope your son gets better soon 👍🏻
Thanks apink, sorry to hear about your own long stints on high dose oral steroids and glad you are making progress with the doctors. Thankfully a weeks course normally sorts him out just unfortunately not for long before it seems to start building up again. Will see what they say next Friday and go from there I guess.
A detailed diary would be useful and , whether different times of day are worse, any allergies. I use Asthma MD app which is a good way of documenting things. I would be asking for referral to tertiary centre. I wish that all blue inhalers had a counter so that us asthmatics can know how many puffs are left. In presume its due to cost basis that they don't. I would phone the respitatory nurses at Asthma UK they are very knowledgable and may be able to make some suggestions that you haven't thought of. Have a frank discussion with your son about your concerns and ask him what he feels about everything. I saw somewhere online an asthmatic had all of his medications listed on a laminated card. On the other side was his best peak flow, worst peak flow. His symptoms when unwell, what medications have helped stabilise his asthma. I thought it was a clever way of having something to hand.
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