Lots of questions- sorry!

hi im new here. my son is 3 and a half and has had symptoms of asthma (wheeze and persistent cough)since 6 months old. We saw a consultant years ago as my son had a chest infection which would not clear and were told by the consultant it was post nasal drip and nothing to do with his chest, finally a year ago I saw a GP by chance who was an asthma specialist who confirmed what we were already thinking- that it was 'suspected'asthma. We were managing well with ventolin and clenil 50, until last November when the cough increased at night. Then a cold set it off even more and were now on the 3rd course of steroids since then. The problem is every time we go to the GP we are repeatedly told his chest is clear, then they delay giving him anything therefore making him worse, also he seems to improve better with a combination of asteroid and antibiotics rather than just one or the other, they don't seem to listen to what were saying about him being awake all night with a horrendous cough. Anyone else experience this? We've never been referred back to see a chest consultant but am thinking of asking for this, I notice a lot of people on the forum say they are under consultants- what have they done for you? My other question is whether anyone has cut out dairy foods and processed foods to improve symptoms or tried any alternative therapies/ holistic therapies with their kids? Sorry for all the questions, very grateful for any advice!!

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  • Sorry i'm not really going to give you any advice but if your doctors are not believing you about how bad your son's cough is through the night is there any chance someone could video him while he's suffering with his cough. You could then possibly show your doctor - if he / she is willing to be reasonablw

  • Just as jinglfairy said, I'd video him.

    We did that for my daughter and it had an amazing effect with regards to attitudes. We have also taken photos of the colour she goes. All these we use when we see the consultant.

    As for care, consultant led care is more specialised. They will also test for triggers along with other causes for his symptoms.

    As for diet etc, that's something you could discuss with a consultant or hospital team. It's tricky cutting things out of their diet when they are so tiny as it can have an impact in other areas. All we have done is decrease carpets in our house and swap them for wood/tiles. I don't use sprays or aerosols. I Hoover every day throughout the house and empty the Hoover daily too. I wet dust their room too daily. As for diet, we went to organic dairy products as apparently they aren't as bad for congestion.

    I hope you get somewhere with this. I remember being where you are now and feeling the helplessness of no one fully understanding what you're facingevery single night. It's exhausting and can feel lonely. That's why this site has been a true life saver for us as a family.

    Take care and let us know how you get on

  • Some of this brings back memories. My asthmatic son is grown up now and currently pretty much clear of asthma, though some of the issues you raise bring back memories - those concerning bad nights in particular. As Emily say, hard flooring is a good idea - we put wood tiles down in our sons's room, but there other things that can be done. Keep his room cool - do not put the heating on in there - even in winter. If you want to take the chill off before he goes to bed, open the door perhaps an hour before bedtime. Every morning, after he's up, open the window and air the room and bedding out thoroughly (ideally for at at least an hour), even if it's sub zero outside. Turn back the sheets, duvet, quilt, whatever and hump up the pillows so that air can circulate over and through them as much as possible. For the same reason ensure that nothing is stored under his bed, air needs to circulate around as much of his bed as can be achieved. When you change the bedding, turn over the mattress before you place a new sheet on it; I used to hoover the surface of the mattress too before I did so. In winter, if you are getting condensation on the windows of his room overnight, wipe them down in the morning with a towel before you open them to reduce the risks of getting mold. Regular hoovering is a must, in particular under the bed and along the edges of any skirting boards; you'd be amazed at how much dust can accumulate there.

    Hope this is of some help and that things improve with your son.

  • Sorry to see the hassle you are having, my son is 2 and a half and totally understand where you are coming from. Since he was 13 months my son has had numerous bouts of ""bronchitous"" as it was labelled, each doctor I seen in the children's ward said the exact same think all signs point to asthma ""but we don't diagnose before 3 unless neccesary"". When he was 22 months he had another so called attack second one that ambulance was involved as he was so bad. When we were kept in I pushed for diagnoses asked them if he had to totally stop breathing for them to recognise it. I eventually got the diagnoses I needed an the support. My son had a serious attack on Tuesday which had him rushed into ressus on arrival as he was blue around the mouth. He got home yesterday but was oxygen and nebuliser dependent for 4 days. Asthma is a scary experience. Push for your diagnoses. I would suggest next time he is bad skip the docs and go to the nearest paediatric hospital and hopefully you will get support you need.

  • Eileen, I was actually quite depressed reading your post: not because of your suggestions, but because of the ""we don't diagnose before three unless necessary"" attitude. I had a similar experience eighteen years ago with my younger son. Our local surgery knew that there was a possibility of my children developing asthma; I'm asthmatic and my husband suffers from seasonal rhinitis. The first warning signs for my younger son came when he was eighteen months old when he started to get eczema - not badly, but it was there, and I had already been told by my parents that I suffered from eczema when I was very small (first twelve months). I was three when the asthma symptoms started: wheezing at nights, much more susceptible to infections, and getting secondary infections on top - everyone reading this will be probably be familiar with the signs. Fifty years ago it took my mother five years to get the referral to a paediatrician for a second opinion, as the family GP was quite clear about what he thought it was: I didn't have asthma, I had a tendency to bronchitis. I had five years of missing school on a regular basis, being tired, being put on diets, having to take the most revolting yellow medicine (I can still recall the taste of it even now) all of which did absolutely no good at all. I can remember being on my mother'slap in the middle of the night, trying to breath, sometimes crying because I was frightened (which of course didn't help with the breathing at all) whilst my mother rubbed my back because she had realised that sometimes it helped me to relax. Eventually, after a particularly bad week when I was eight she had had enough; she went into the GP and gave him an absolute blistering. She never told me what she said, but it worked: she got the referral to a paediatrician, who had no doubts as to what it was and I was put on medication for asthma that changed my life.

    Twenty six years later when my son developed symptoms I was told that yes, it was probably asthma (a big improvement there) but they did not like giving the inhaled steroids that would help him when he was so young and small. There was a version of the medication I had been put on available, but I don't think it was the same one and it certainly was not as effective. Things got worse until eventually, after four emergency situations in four months it was agreed that he needed to be put on inhaled steroids. It changed his life just as getting the correct medication had changed mine. From missing nursery every two or three weeks, we went to missing nursery perhaps twice a term, and then just once a term. And the local surgery was brilliant and very supportive whoever he was ill. Fantastic!

    I suppose I was lucky because the doctors knew that there was a family history of Asthma, so I didn't have to fight for the right treatment as my mother had done. Fifty years on, it's a little sad to hear that some parents are still having a difficult time getting the right diagnosis.

  • Maggie, sorry to hear of your experience. I know in some cases some kids do take bad bronchitous and they don't want to push it on as asthma but my son had excema from birth an egg allergy coughing bouts during the night also very restless during the night, I have controlled asthma but the history was always there to as my brother and brother in law had childhood asthma and still suffer now in their 30's and 40's so it wasn't as if the signs were not there. My son is 2 and a half has a consultant and asthma plan however since this attack it has now been stepped up a notch he has an asthma nurse now who he will attend. medication upped he is now on seritide 125mg which was 50mg before this week. He's on the mend now, wish they could make it easier for diagnoses for people. xx

  • Hi I'm a new member and really glad to discover its not just me struggling to find solutions.my daughter has terrible allergic asthma we have had to stay in hospital alot and unfortunately had to have ambulance admitions many times because sometimes it takes us by supprise!at the moment and I'm just settling for another night watching her like a hawk because that dreaded cough is back!I'm so hoping to learn something new off you guys and stop it for good.

    One thing I have to share is that last year we discovered that giving our daughter piriton at the first sign of trouble stopped an attack by stopping her coughing.I have mentioned this at several hospital appointment and been told that it is not possible.they really arnt interested.they also tell me piriton is responsible for asthma reactions which fair enough and must be true for some people but what about those with the type of asthma who it can save all that steroid taking and 2 hrl nebs.it totally breaks my heart watching my daughter suffer that.

    So I was wondering.does anyone else have a child who only seems to wheeze as a result of continuous coughing or has anyone else had success with piriton?

    It would really help to know.and although I want to share this please remember what they told me about piriton being bad for asthmatics.apparently they are studying it now and advising against it .that just makes me think they have diagnosed my daughter wrongly tho??so confusing xx

  • Birdyven, you say your daughter has allergic Asthma, have you managed to work out what she is reacting to? Has she had allergy screening?

  • Hello again.yes she has had tests .Dust mites and horses set her off which is really rotten as she loves horses and even has a tiny pony of her own she can't go near. I am however a bit suspicious about food being a culprit also so I think its time for further tests.

  • Hi birdven,

    Does your daughter see a respiratory or allergy specialist or both? I have found that being under the care of a multidisciplinary team has really helped control my allergic asthma (I am an adult with severe allergies and asthma though). For several years I was under the care of both teams but once they started talking and making plans together I started to receive better advice/treatment. While the respiratory team are very good at treating the asthma, in my experience the allergy team investigated the allergies and helped me to pinpoint them with food/symptom diaries and them blood tests. I am also under them because of anaphylaxis. I take Piriton at the first sign of an acute reaction (have done for over 10 years) which can sometimes mean I can avoid using an Epi-pen so am very interested in what you say about that. I am not experienced with children's meds but does she take anti histamines to prevent reactions?

    I assume you have looked at ways of reducing dust mites. I found anti allergy mattress and pillow protectors which totally encase the mattress/pillow to be most effective as well as a good Hoover. I can sympathise with the horses. I loved to ride as a child but always had to run straight to the shower before my eyes went puffy. I had to stop when I would be wheezing about 5 minutes after getting on a horse despite anti histamines and inhalers which was difficult being from a family with 3 horses!

  • I used to have guinea pigs as a child - and turned out to be allergic to them. I'm allergic now to any soft coated animal, so cats, rabbits, guinea-pigs etc, are a no go - which is not just sad for me, it was sad for my children, who would have loved to have a pet like that when they were small; one of them is also asthmatic - ironically the one who would most have liked to have had a pet.

    I'm interested at what you say about piriton being bad for asthma. When I was a child I was put on piriton for hayfever. Back in the 1960s there was no paediatric version of it; I used to have half an adult tablet morning and evening (I think) and I was very small for my age. Looking back on it, comments in my school reports on how I seemed to live in a dream world at times were probably not far off the mark, given the known side effects of the medication; as far as my hayfever was concerned it was completely ineffective. Whether it had any impact on my asthma I can't really say as the GP we had when I was a child refused to acknowledge that I was asthmatic for five years - until eventually we got to the stage when I was so unwell one week that my mother insisted on a referral to a consultant paediatrician, who went on to make the diagnosis.

    As Kayla's says, there are things you can do to help with dust mites. We put hard flooring down in my sons's bedroom, and I was also quite strict about not storing stuff under the bed, because of way it can trap dust, but you probably already know all this.

  • I hope you get somewhere with this. I remember being where you are now and feeling the helplessness of no one fully understanding what you're facingevery single night. It's exhausting and can feel lonely. That's why this site has been a true life saver for us as a family.

  • Good luck.....

  • I know that this is probably irrelevant but I've been diagnosed with asthma as a 6 month old baby and now I'm 16 years old an still living with asthma. I know so many people living with asthma and so my friend and I have been coming up with designs to create a flavoured asthma inhaler but we can't create anything because we don't know how many people would like one. If you'd like one please reply telling me your name, age, inhaler type, whether you've used a metered dose inhaler, describe the taste in two words, if you'd buy an inhaler and the flavour you'd prefer. Thank you all in advance.

  • Sorry to see the hassle you are having, my son is 2 and a half and totally understand where you are coming from. Since he was 13 months my son has had numerous bouts of ""bronchitous"" as it was labelled, each doctor I seen in the children's ward said the exact same think all signs point to asthma ""but we don't diagnose before 3 unless neccesary"". When he was 22 months he had another so called attack second one that ambulance was involved as he was so bad. When we were kept in I pushed for diagnoses asked them if he had to totally stop breathing for them to recognise it. I eventually got the diagnoses I needed an the support. My son had a serious attack on Tuesday which had him rushed into ressus on arrival as he was blue around the mouth. He got home yesterday but was oxygen and nebuliser dependent for 4 days. Asthma is a scary experience. Push for your diagnoses. I would suggest next time he is bad skip the docs and go to the nearest paediatric hospital and hopefully you will get support you need

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