How is your son getting on now?

<<touchwood>> Thomas seems to be better at the moment on his new medications although he hasn't picked up any colds or viruses for a while now that will be the proper test. Unfortunately, getting repeats of the medications the consultant prescribed at the hospital are turning out to be a bit of an issue. My GP doesnt seem too happy prescribing them as 3 of his medications are unlicenced for children under 4-5yrs old. They are the Seretide, Flixonase and the Nedocromil. So waiting to hear what is going to happen about getting them now they are going to contact the consultant and then let me know. For the first time in months I am not having to give him the blue inhalers regularly so something is definitely helping him. Its been almost 6 weeks since his last hospital admission and the longest he has avoided hospital since the beginning of August has been just under 7 weeks so I am more positive than I have been in quite a while. I have to admit the amount of medications he is taking at such a young age does worry me but if its what he needs to stay well there isnt much that can be done.


38 Replies

  • Thanks for asking.

    Glad to hear Thomas is doing good on the new set of meds. Great news about not needing as much ventolin. Hopefully things stay settled now especially for his adenoid surgery coming up.

    We are now on seretide and we had a problem with the pharmacy needing to vet the prescription as like you said it's not for 2 year olds but my GP has been fab. Ryan's resp nurse discussed it with him I think. He's a good GP anyway thankfully. I still feel a little uneasy about that but as his consultant said we don't really have a choice and so far it is helping. We've had a bad run recently. Since November he's had tonsillitis and then croup which needed pred and now a chest infection so am thinking it might be best to pop to the GP tomorrow before the weekend. Despite the chest infection he isn't coughing as much now he's on seretide (I don't know if its a coincidence but before it'd be constant coughing) he is quite wheezy and very breathy though.

    Do you ever worry about the amount of pred your son has? My son's consultant has warned us they are very restricted by what else they can do due to his age and whilst I still hope once we have a good illness free stretch of seretide the flare ups won't be as often or bad seeing as we've hopefully got the chronic side of things under control between flare ups. I just worry that history shows he often needs pred to fully overcome flare ups. I will ask his nurse when she comes next as we've not really discussed it. Just wondered how you felt?

  • Yeah fingers crossed he stays fairly well, although haven't heard anything since the letter saying they will put him on the list so have a feeling we may be waiting a while.

    Our GP is usually very good. I think the problem is she is concerned at what effect all the unlicenced drugs could have on him as obv they havent been tested on small children like him. Even the asthma UK nurse admitted she had never come accross a child of his age on the Nedocromil before and its this one and the nasal spray the doctor isnt happy prescribing. I have spoken to his consultants secretary today and she told me not to worry something will be sorted out.

    Thomas has had 1 x 3-day course and 4 x 5-day courses since August. It is not just the pred I worry about though as both the Seretide and Flixonase are both steroid based as well. I asked about the Chickenpox and if he does catch it I need to take him straight to GP to be started on antivirals as he has had high doses of steroids. Will your consultant not prescribe anything in addition to the seretide? Since my son started ont he Nedocromil I have noticed quite a difference tbh. It apparently works by preventing the release of substances that cause inflamation in the air passages of the lungs. I think he has been given this because he mouth breathes he doesnt get the nasal hairs acting like a filter so concequently and pollution, allergens in the air go straight down his airways and trigger the attacks.

    Has your son been allergy tested? Thomas is being tested on the 19th, they dont think there is an allergy link but at the moment need to rule it out.

  • I'm sure your GP is just being cautious and hopefully the consultant will sort it all out. Glad to hear they help him you must be pleased and I can imagine your concern if they are hesitant to prescribe them again if they help him. I think my son does suffer with a lot of inflammation but I think his is more linked to the fact his airways are just so hypersensitive. Have they said they hope that once Thomas has had his adenoids removed that should help solve the problems and he might not need the nedocromil? Or is it a long term thing? I never realised how hand in hand upper respiratory is to asthma. I mean logically it makes sense as it's all connected but I do think if we didn't have so much upper respiratory stuff going on that his asthma wouldn't be so stubborn. We shall see what ent have to say. I'm a little nervous about that meeting as the last time the consultant saw him to perform the operation he had to check his airways he was quite abrupt and didn't seem like he wanted to listen to us. I'm preparing myself this time to make sure I'm listened to!

    I don't think his consultant is happy to prescribe anything else st the moment, we really need a clear run of being illness free to fully see what the seretide can do for him. We mainly liase with his community nurse now as I didn't want to lose her so she's co-ordinating his care and then dealing with the consultant as and when we need. Sounds an Irish way of doing things but she really is fab. She has a lot more time for us and is so much easier to get hold of. All the consultants and his GP really respect her opinion and pretty much do as she asks so I kind of like it this way as we still have access to the consultants expertise but also a lot more support.

    We didn't have allergy testing as his allergies are all obvious. When he's near cats he reacts, when he has anything with animal milk in he reacts, he has obvious hayfever and we already do everything we can to reduce dust mites so allergy testing would just tell us what we already know and he takes antihistamines twice a day anyway. It would be very useful if we weren't sure though and it might just be the missing link for some as to what causes their flare ups. I hope it goes well for you guys.

  • In some ways it would be easier if Thomas had an obvious trigger like an allergy as your son does. I think if there is no shown allergies it will just continue my fear of his asthma. It terrifies me sometimes there is no warning it is going to get as bad as it does. We think we are in control and then we will be rushing him to hospital. The consultant hopes that the adenoid removal will lessen the severity of his breathing problems. It would be good if his medications could be reduced at some point. Like I have said the number of different steroid medications does cause me concern. Although I doubt it will be in the winter months as we have been warne the cold air being breathes through his mouth straight down the airways could trigger a big attack.

    I like the sound of the way you have it, sometimes I wish I had some one like that who I could speak to to allay some of my fears. I would be interested to hear what the nurse says about all the steroids if you ask let me know what she says.

    X x

  • I will do Jenny. I completely know what you mean about always being wary of the next attack. I'm on full alert with every cough, sneeze or runny nose and am only a notch of full alert every other time!

  • Awful isn't it being so wary at something normal for most children such as a cold or cough. We have decided not to go abroad in February because we were worried about him being ill especially after our last holiday being so close to ending up with him in hospital. Not sure about a summer holiday either we may go without going abroad this year.

  • Uh oh Thomas has a cold again and despite the seretide, nedocromil, flixonase and montelukast we have been back using the ventolin in the day and night for the past two days. Typical my son has impeccable timing any big event and he seems to take a turn for the worse, he managed to get taken in by ambulance 10 minutes before my grandfathers funeral on one of his last admissions. I just hope we can stave this off as I really don't fancy being in over Christmas.

  • Didn't get far at all went to the GP in the hope of a course of pred this morning and was sent straight up the hospital. I'm sure we will end up staying tonight at least :(

  • Oh no. I hope you are both home soon and he's better for Christmas.

  • Lower respiratory infection this time, want to know more about what type of infection it is when the doctors come round in the morning.

  • Any updates?

    Unfortunately my son had food with milk in which he's had a reaction to and is wheezy. Doesn't seem too bad thankfully but last time it took him a long time to recover. We were just starting to do so well as well.

  • Frustrating isn't it Thomas was doing really well although we saw his consultant and he seems happy as Thomas wasn't as ill this time so he reckons at least that's a bonus. Not sure what the infection is definitely but poss very very minor pneumonia. We home but he's still quite wheezy and not great 3 hours after last large dose of salbutamol but I not gona take him back just yet.

  • Hope he's ok.

    Ryan isn't wheezy now thankfully. Asthma has now decided to pick on my eldest and he had an asthma attack in the early hours. Thankfully I prepared as I always am with asthma now!

    Thought best to get him checked over and typical we get the doctor who is hung up on wheezing (or lack of) despite me saying he doesn't wheeze. He has cough variant asthma hence the constant coughing. It makes me so mad when you don't get listened to. Thankfully he has responded well to the ventolin.

  • Some info about the use of nedocromil (tilade) in paeds, including randomised clinical trials here:

    I hope Thomas improves soon..

    Lynda :)

  • Lynda - Thanks for that article was interesting reading it. Thomas is only 2yrs 10mths so is a lot younger than the paediatric patients in the study I haven't come accross anyone else with a child of a similar age on these medications. He seems a bit better than he was at the moment but definitely not back to normal. I may get him checked over by the GP tomorrow as he still seems quite wheezy.

    mumto2asthmatics - My mum would be able to relate to you I always had cough varient asthma when I was younger she said medical opinions were very frustrating!

  • Hi Jenny, hope Thomas is doing better today - I hadn't realised he was quite so young bless him. That must be so stressful for you all :(

    Take care,


  • Desperately trying to avoid a&e at the moment. Saw the out of hours Drs yesterday and he's got an infection on both lungs. Both sound very crackly and consolidated. Dr agreed to give oral antibiotics so we could stay at home as his sats werent low enough to need o2. He's had nearly a day and a half so hoping we see an improvement tomorrow.

    Hope you had a good Christmas Jenny and Thomas.

  • Oh no :( I really feel for you is that your older son or Ryan? Thomas still isn't quite right either he's still coughing away so am giving ventolin during the day if he's still like it Monday I will def be seeing the doctor.

    We had a lovely Christmas and I am extremely thankful we avoided being in on the big day I have been worrying about it for weeks.

  • Glad you managed to have a lovely christmas Jenny, though sorry to hear things aren't great. Lets hope things improve over the weekend. :)

  • It's horrible to see him like this he probably wouldn't be half as bad if he could sit still and rest but someone as young as him shouldn't have to do this. I wish some family would understand more i am getting fed up of certain attitudes perhaps if they came to see him when he was in hospital they would understand my caution and fear I have. He has a temperature again (yesterday was last day of his anti biotic) so am wondering if his lower respiratory infection hasn't quite gone.

  • its not fair is it. Poor boy :(

    I know where you are coming from with attitude. Nicks family have spent years not believing us with regards to how ill I have been despite recurrent pneumonia and almost being ventilated. We visited his mother in the summer and I had a massive asthma attack on the way there, by the time we got there Nick was ready to ring an ambulance (hadn't been able to use plug in nebuliser in car!!). Thankfully after 5 nebs things settled slightly but I still couldnt walk all day. It frightened the life out of them and she has been very different since - but never apologised for her attitude!! LOL. She was convinced I was just lazy and sponging off her son. Lovely lady ;) Unfortunately she had spread her views across the rest of the family. Its the one asthma attack I've had which actually did some good, we dont get any grief now..

    I hope his temp doesnt continue to escalate. He must be so fed up, its hard when they are so young and dont understand.

    Take care,


  • I am sure if certain members of the family could be bothered to come to the hospital they would understand how serious his asthma is but they don't and then expect me to take my son to visit them in an unsuitable environment (they smoke indoors but think its ok as long as they don't smoke while we there). I have been talking about how bad he's been and it being likened to a cold another family member suffering from hmmm.

    People's attitudes and understanding of asthma from what I have experienced are very poor. One more can't you just give him his inhalers comment and I think I will burst. Do they not think I do that, if only it was that easy!

  • I was just about to say exactly the same! Its Ryan (eldest has bounced back to pretty much normal after a couple of days) and like you say. It is hard seeing them wanting to be active and play but being limited or having it affect them. Ryan is probably better at night at the moment probably for that reason I think. We did end up in a&e as he was so wheezy. His wheezing is quite intermittent at the moment which is odd. I've not really had him like that before. Lungs were still crackly, left more than right so I'm hoping that means the antibiotics are working. We are giving him 10 puffs 4 hourly and that's keeping the wheeze at bay but he's still coughing constantly. He's really frustrated as he has to stop talking to cough.

    Its a shame people don't seem to understand. I still get people telling me to just give him an inhaler. Like its that simple! I wish it was that simple because I'm pretty tired of this all the time we shall get through it and do what we have to do and surely one day it'll get easier! I too have found such a poor understanding of asthma on so many levels. Even with doctors. The a&e Dr we saw with my eldest was so obsessed with the fact he wasn't wheezy. He's never wheezed. He has cough variant asthma the clue is in the name! If he's not wheezy he can't be that poorly seems to be a very wide view unfortunately they don't think about the effect on their lives. Ryan's probably used to it. Its all he's known but he does know he can't keep up or that he gets tired quickly. If he's too exhausted just coughing and breathing that's not ok!

    Fingers crossed thomas isn't getting poorly again and you can start the new year well. Start as you mean to go on as they say! It sounds like Thomas takes a while to get over these set backs like Ryan does. We will be doing well and then we hit a bump and it sends us off track again. Very frustrating.

  • Thomas does take a while to get over things it's such a shame as it leaves him vulnerable to catching something else. Thomas is always better at night too but its the same it's the only time he keeps relatively still. I'm just finding it very hard at the moment I'm usually so strong but feel so down I worry 24/7 and it can't help how I feel.

  • Omg just when I didn't think it could get any worse Thomas swallows a sweet whole and was going blue despite repeated whacks on the back bloody thing wouldn't budge. Was scariest moment ever but luckily just as my OH was confirming address details to ambulance it moved and he could breath again. He's back running riot while I still terrified.

  • Oh gosh how terrifying. Glad he's ok. What a nightmare for you.

  • Nursefurby - do you get affected by smoke on people's clothes? My asthma is very minor but whenever I encounter cigarette smoke whether it be from someone smoking or even on clothes of someone who's been in a smoky environment it really affects me. What can you do when it's close family and friends :(

  • It's awful they don't/won't understand. I'm not a smoker and never have been so don't understand the hook of it but I would like to think I could put a child's health as something important enough to be cautious or at least courteous around them. It's tough as its not illegal and their right to smoke but its also you/your sons right to be in control of their own health. I think would be limiting his exposure to that environments if I could. I grew up passive smoking and I hated it which is probably why I hate it now and even now I don't take my boys to certain family homes unless essential as they smoke indoors and fair enough it's their house and their choice and we dont visit often so I wouldn't expect them to never smoke in their own home because we might pop ground every couple of months so I made the decision not to take them there and see the family elsewhere.

  • I will not allow my son to go in houses where people smoke indoors but this causes problems because certain people don't seem to understand why. I don't know what more we can say. It's not like these people come visit us when he's even in hospital perhaps if they did they would understand my reasons for not wanting to expose him to anything that may make him ill. I don't expect people who are smokers not to smoke just to understand how it can affect my son and to at least wash their hands after they have been out smoking rather than just coming back in and touching all his toys, dummy etc!

  • I totally understand what you mean. Ryan is allergic to cats although its getting better as he gets older, when he was younger he would be very badly affected and some people just didn't understand. It wasn't until one of my friends who had just got cats saw how quickly and badly he was affected that she would always let them out when we came over and vacuum before hand. I really appreciated that and it wasn't a lot of effort on her part but made a difference to him.

    He's still wheezy and crackly and we finished the antibiotics today so he's on another 7 days of oral pred. Not how I wanted to start the new year. We started 2012 off with weekly GP appointments and a huge course of pred and I didn't think we would be doing the same in 2013. Honestly I am finding things hard. My eldest is bored of being home now the excitement of Christmas is over and Ryan is struggling to walk far so going out isn't as easy at the moment and we all know steroids and toddlers aren't the greatest mix! I find the more he has them the more he's affected. I'm really hoping he's back to normal for his birthday in 2 weeks.

    He's such a monkey too and isn't happy to let anyone listen to his chest which is difficult at the moment with this infection etc. Yet we managed to see our GP today and he had lifted his t shirt up all ready for him and sat beautifully!

  • I am finding things hard too I'm struggling to remain positive about things at the moment. I was doing ok but just feel that again we will just be waiting for the next admission they have been every 5-7 weeks regular as clockwork. I never imagined 6 months ago things would be like this, the last 6 months have just been so stressful for all our family. Thomas still isn't quite right but not bad enough for me to take back to the doctor yet. I have noticed on the forums a few people have home nebs.. I asked about this but they won't allow it for Thomas :(

    How is Ryan now? I wish our GP was as good as yours sounds. Don't get me wrong ours are good but they seem scared of Thomas and send him to the hospital most times I take him when I feel all he needs is a course of pred!

  • I really hope for both your sake things go smoothly for a bit. The living on edge is awful and things were going so well before I put his hospital bag away (just had some spare bits in, list of medications and a spare spacer and reliever ready to grab if needed) and it was nice going to bed relaxed but now this has hit. It has been a nasty one so hopefully things will just pick up again once we are finally over it. Do you think this combo is working for Thomas?

    His lungs are frustrating at the moment as he can vary in how bad he is a few times a day so we may see someone in the morning and managing ok but by the afternoon he's incredibly wheezy but they can only treat what they see so if they see him and he's doing ok that's all they see even if I tell them differently. My eldest has just got his peak flow meter and I want to try and get Ryan used to how his brother does it so in the future we can use it to show he's getting bad before he gets too bad but also that he's still struggling if he happens to be seen when he's not at his worse. He is the same with his sats they never go too low until we are in very dangerous territory which is obviously good that he can keep them up but also puts Drs off as they don't see how much he's working or struggling because he's managing to keep his sats up. Whereas the GP won't usually take his sats until he's thoroughly looked at him and spoken to me about how I think he is. Does Thomas drop sats often? And do they stay low for long?

    I know what you mean about being scared off, we saw many out of hours Drs who as soon as you said he is ex prem, ventilated etc etc they'd be reaching for the phone to cau when all he needed was an increase in ventolin or some pred! We managed a 15 minute bike ride yesterday before having to come home but it was nice to get out even if it was cold. He had a bad night last night and is still just as wheezy and crackly. He hasn't had a temperature all day yesterday so I think its just the asthma being a pickle now. Come on prednisolone. The race is on for his birthday. I want him running around soft play with his friends!

    Sorry that was a novel again! Has Thomas had his allergy testing yet?

  • I think on a day to day basis when he is well it works fine and even when he was bad it seems to have stopped him getting as ill as he has. But it doesn't seem to prevent the admissions when he does catch a cold or virus :(

    Thomas's sats have never been above 96 when we have had them taken. Usually after an admission his sats are around 92-93 on discharge. I want to get a monitor for at home so I can keep an eye on it as usually by the time we get to hospital it's 88 or less, lowest has been 77.

    Allergy testing is on the 9th January... And.... This morning I got the call we have been waiting for he has been booked for his adenoids op on the 17th January. I'm scared now its not far away and have to keep everything crossed I can keep him well in the meantime.

    We are going to try going for a walk today have to see how that goes Thomas has wanted to be carried everywhere lately.

  • Fingers crossed the allergy testing goes well and all the best for the adenoids op. Hope he stays healthy between now and then. Its natural to be apprehensive but I'm sure he will be well looked after and just fine. The only tip I have is try and get them to use a cannula to get him to sleep as it's a lot lot nicer than the mask. Ryan had to have the mask as they couldn't get a cannula in due to the scarring on his hands and although it was quick he really hated it and it meant I couldn't hold him as he fell asleep.

    Hope it makes a huge difference for him.

  • I really hope it makes the difference his doctors have said it will but not getting my hopes up as so many things have been said previous to this.. Popped into the doctors today to see if the prescription for fortini was ready as dietician wrote to them about it and they haven't even received the letter yet. While I was there asked about my foot X-ray as dropped a ladder on it 2 months ago and its still swollen and bruised. Had an X-ray a month ago and doctor said they would ring me if X-ray showed anything not heard anything so assumed it was all ok. Found out while I was there that no one has even reviewed the X-ray so am now waiting for a doctor to call me. I don't think it's broken but if its still hurting after 2 months surely there must be something they can do?

    Thomas didn't do much walking today it involved a lot of carrying by daddy again.

  • Well bloody typical turns out I have a stress fracture on my foot just my luck. Got to go to GP Friday and then will prob be referred to specialist. All a bit of a joke really did it 2 months ago, X-ray a month ago and only find out about X-ray today cos I asked no one at the surgery had reviewed it. Not impressed. Hope I haven't done more damage walking round on it all this time.

  • Gosh hope you're ok.

  • Well should find out later what the action plan for the foot is. It's not mega painful although I am having trouble sleeping cos it throbs at night.

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