New and looking for help please!!

Hi, my little girl will be three tomorrow and we have been told that she is ?Asthmatic. It all started a year and a half ago when she developed a chest infection, ever since then she gets a chest infection roughly every 6 weeks which are treated with antibiotics, prednisolene or sometimes both and has been admitted to paediatric ward on a few occasions for nebs. We see a consultant every 2 -3 months and over the last year and a half she has been given a brown, blue and green inhaler along with montelukast sachets. Throughout the day she is always full of mucus on her chest to the point you can hear it rattling and she appears quite out of breath at times. Night times are awful as from about 10:30 onwards she just coughs constantly to the point where she is sick most nights and brings up lots of phlegm. I'm just wondering if this sounds like asthma to those that have been given a definite diagnosis for children of a similar age and if anyone can give me any advice on how to go forward with our consultant as we are both exhausted after months of broken sleep!

Thanks x

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  • Hi!

    My son has just turned 3 and he is also on quite a few different medications. He was finally diagnosed as being asthmatic in August last year, although this was only reluctantly and because of my history - I have asthma, hayfever, had eczema when i was little and have allergies. My sons asthma is different to what you describe your daughter being like, although I can sympathise because it sounds like she is going through exactly what I used to with my asthma. Thomas sees his consultant every 4-8 weeks at the moment and as they are struggling to get his under control his consultant is referring him to the RBH for more specialist care. We have warned that Thomas's hospital admissions may be unavoidable despite all the medications, hes had 7 or so admissions in 7 months now. I have to admit since Christmas Thomas has been coughing a lot more especially at night but his is typically a dry unproductive cough which stops or at least lessens when we use the blue inhaler. We tend to give 2 puffs, wait 2 minutes, give 2 puffs up to a maximum of 10, and if hes no better by this time whether he be wheezing or coughing we should take him to A&E.

    What is your consultants plan going forward? Do you feel the inhalers are helping? It is very difficult and scary at times with a child with breathing problems. Have you called the Asthma UK helpline? The nurses are really helpful and I would highly recommend calling them for some advice.

    Jenny x

  • Oh bless him, that's a lot of admissions in such a short time, and must be so scary for you! I haven't called the helpline actually but now you mention it that's going to be a good idea before our next appointment. Like you I have to give her numerous puffs of her blue inhaler and eventually it helps, some night I am tempted to take her to a&e, but I'm never sure if the cough is classed as an attack or if its just something that w e have to deal with if that makes sense? Our last admission was because i took her to the out of hours surgery thinking she just had another chest infection but seemed to be ok, by the time i had made the 15 minute trip to the clinic she was really working hard with sats of 84%, followed by a nice little trip in the ambulance. it just scares me how quickly things change with her. Our consultant just seems to plod along without really making any plans and even had the cheek to ask if I actually give her her meds!!! He had her tested for cf, and various other blood tests which were all normal apart from a raised crp but she was just getting over an infection at that point. I just feel at a loss as to what to do next!

  • Haha that one is a favourite of mine, ""do you give him his meds"". Do they really think anyone wants a poorly child, seeing your child suffer and having to stay in hospital really isn't something anyone wants to be experiencing! Thomas's consultant came out with that one at the last appointment. Thomas has just had blood tests for just about everything - liver function, kidney function, cortisol levels, immunoglobin levels, celiac screen amongst loads of other things. Still waiting for quite a few of the results at the moment. He has an MRI tomorrow now they want a scan of his brain and pituitary glands. His consultant seems completely puzzled by him. He is on Seretide 125, Nedocromil, Flixonase, Montelukast and Ventolin at the moment althought this combination doesn't seem to be working as well now.

    I was told by the respiratory nurse we see at every appointment with the consultant, that wheezing or coughing can be a sign of respiratory distress so should treat both as seriously. I wasn't sure as the coughing is one of the newer symptoms with Thomas, in the past he has just wheezed and a lot of the time he quickly passes that and doesnt wheeze at all. To work out how bad Thomas is I tend to look for pulling in between his ribs and around his neck as he can be happily running round and playing even when he is bad (unless he is really really ill).

    Is is a paediatric respiratory specialist you see?

  • I know I'm sure they must think we like to see our kids ill the way they speak to us sometimes!! Sounds like I was as impressed with that comment as you lol! Do ghey think Thomas's symptoms are linked to something else as well or are they just being extra cautious? I've not heard of the seretide, nedocromilor flixonase, are they all inhalers or other medications? I had no idea that I should treat her coughing as seriously as that maybe I should have taken her the other night when she was coughing for about 5 and a half hours straight!! I just feel let down by my consultant as he just brushes me off and makes me feel like I'm worried over nothing, when perhaps at times I am right to be worried! Maisy is the same as Thomas by the sounds of things, she just keeps going and you don't realise how poorly she is until she just suddenly drops, I think that's one reason drs etc don't seem to take s that seriously as she always seems so happy and playful! I don't think he is a respiratory specialist, or at least it dosnt say that's one of his areas on our hospitals website! x

  • He was previously on clenil but that wasnt working for him so they changed him to the seretide inhaler about 7-8 months ago. The Nedocromil is an inhaler which hardly seems to be used and the flixonase is a nasal spray.

    They are concerned Thomas's asthma symptoms may be linked to something else as he excessive drinks as well it was about 4 litres per day but we have managed to reduce it to 2.5-3litres a day. I was told for ages it was habitual but now they are concerned there may be more to it. We only give him water.

    Thomas is seen in a specialist respiratory clinic so his consultant is an allergy and respiratory specialist and we see the respiratory nurse who is fab and gives us advice on taking inhalers best techniques and also things we can try to help.

    At the hospital today for his MRI. Just waiting now not looking forward to him having another GA.

  • That's a lot to drink every day, I thought maisy drank a lot lol! Hope everything went ok with the MRI, do you get the results straight away or will you have to wait for your next appointment ? After hearing the support you get at your appointments, as in seeing a specialist nurse and consultant, I think I'm going to give my consultant one last chance at our next appointment and ask for a referral if he still dosnt take me seriously! x

  • We should have the results at his consultant appointment on Tuesday along with the results of all his bloods hopefully. I don't know what the next plan is, maybe a broncoscopy? I just feel so helpless it doesn't help when his consultant sits there and says he has no idea what's going on with Thomas but he is extremely concerned. Don't get me wrong I appreciate his honesty but its almost as if you expect doctors to have all the answers. He has also been re-referred back to endocrinology so it maybe that more is going on with him. Just find it all scary.

    Just a thought, has your daughter been allergy tested? They haven't managed to do Thomas's skin test as yet because he needs to be well with no cold, steroids or antibiotics but they have done a allergy blood test. If you don't mind me asking where is it you are seen?

  • Fingers crossed you get some answers soon, it's good that you don't have too long to wait for the results, although anything when you are waiting feels like a lifetime! She has not had any skin allergy tests and it is something I mentioned a while ago but again was just brushed off saying at that point it was unnecessary, when she had her original bloods they tested her immunoglobulins, so I think that was something to do with allergies!? But if they have to be clear of antibiotics/ steroids etc I think we may have the same problem as you in getting it done! We are in Boston, Lincolnshire. x

  • Argh one of the things I have dreaded for a while happened earlier, Thomas's nursery called to say the child he was playing with Thursday has come out in chickenpox over the weekend. I will be on high alert for the next 3 weeks, the last time we discussed it with his consultant he recommended we get anti virals as soon as Thomas gets any spots.

  • Oh no chicken pix are horrible, hopefully he will get away lightly with them, at least you've got plenty of warning to keep an eye out for those dreaded spots! x

  • Yep I will def be keeping an eye out for them! How's your daughter now? Thomas's latest cold doesnt seem to be getting any worse but doesn't seem to be getting much better either his cough at the moment is awful.

  • Yep I will def be keeping an eye out for them! How's your daughter now? Thomas's latest cold doesnt seem to be getting any worse but doesn't seem to be getting much better either his cough at the moment is awful.

    Sorry for delay in replying, hope there's no sign of those spots yet! Thought we had turned a corner the last couple of days but last night back to the same old story.... Cough cough cough.... Vomit .... Cough cough cough!!! She just seems to have so much mucus it's ridiculous! I really don't think this constant change of weather is helping!! Just hoping and praying our consultant listens to us this time and can come up with something that works! Hope Thomas' cold is starting to clear up now x

  • Hi, my little girl will be three tomorrow and we have been told that she is ?Asthmatic. It all started a year and a half ago when she developed a chest infection, ever since then she gets a chest infection roughly every 6 weeks which are treated with antibiotics, prednisolene or sometimes both and has been admitted to paediatric ward on a few occasions for nebs. We see a consultant every 2 -3 months and over the last year and a half she has been given a brown, blue and green inhaler along with montelukast sachets. Throughout the day she is always full of mucus on her chest to the point you can hear it rattling and she appears quite out of breath at times. Night times are awful as from about 10:30 onwards she just coughs constantly to the point where she is sick most nights and brings up lots of phlegm. I'm just wondering if this sounds like asthma to those that have been given a definite diagnosis for children of a similar age and if anyone can give me any advice on how to go forward with our consultant as we are both exhausted after months of broken sleep!

    Thanks x

    Hi Andy here as a 53 year old asthmatic I have diagnosed myself after 30 years as being

    a celiac I think thats how you spell it . I work seasonally at as a hotel chef so for 4 months I,m out of work any way getting to the point ; I stopped eating bread then milk then cheese plus no tea or coffee. My asthma has stopped all together no attacks no wheezing no heavy sweating when playing sport and no snoring at night . All the time my job was making me ill. where I was dependant on inhalers about my person I can now go out in the cold weather and my upper respiratory is clear as a bell TRULY A REVELATION AFTER 30 YEARS . PLEASE GET YOUR CHILD CHECKED FOR MILK WHEAT GLUTEN ALLERGY, ALSO CHEESE GAVE ME EXCEMA. DO AN INTERNET SEARCH, ASK; DOES MILK AFFECT ASTHMA . It is the protiens not the sugars that are the problem. Be aware that milk is in everything including maltodextrin . CHEERS ANDY IN CORNWALL

  • Hi Andy, great to hear that your asthma has improved, but Im curious, have you just stopped eating bread, or all products containing gluten (its in just about everything, from sauces, to sweets, and condiments as well as the obvious baked goods and pasta etc.

    I was diagnosed as coeliac about eight years ago (aged 32) and my health improved immeasurably on a gluten free diet, but it had no impact whatsoever on my asthma. I also dont eat any of the other things you mention as I am fed by tube, and do not eat food. The difficulty with allergies, is that they are individual - what affects one person is absolutely fine for another, this goes for food allergies as well as environmental allergies - hence I have a house full of cats and dogs with no problem! Its not really helpful to make sweeping causal links based on individual experience without clear evidence (not anecdotal) to back it up. Im not aware of any research or randomised controlled trials which demonstrate milk being a cause of asthma, but if you do know of any I would certainly be interested to see them.

    btw, not sure if you know, but in typing, capitals is usually considered to be shouting ;) lol

    Lynda :)

  • Hi Andy, great to hear that your asthma has improved, but Im curious, have you just stopped eating bread, or all products containing gluten (its in just about everything, from sauces, to sweets, and condiments as well as the obvious baked goods and pasta etc.

    I was diagnosed as coeliac about eight years ago (aged 32) and my health improved immeasurably on a gluten free diet, but it had no impact whatsoever on my asthma. I also dont eat any of the other things you mention as I am fed by tube, and do not eat food. The difficulty with allergies, is that they are individual - what affects one person is absolutely fine for another, this goes for food allergies as well as environmental allergies - hence I have a house full of cats and dogs with no problem! Its not really helpful to make sweeping causal links based on individual experience without clear evidence (not anecdotal) to back it up. Im not aware of any research or randomised controlled trials which demonstrate milk being a cause of asthma, but if you do know of any I would certainly be interested to see them.

    btw, not sure if you know, but in typing, capitals is usually considered to be shouting ;) lol

    Lynda :)

    Hi Lynda I have stopped all gluten and all milk products pleasse go on ask jeeves and put in question does milk affect asthma your answers will be found there . The american site confirmed what I had diagnosed myself that the portiens cassiene and whey cause upper respiratory asthma restricted airways . Let me know what you find . Sorry about the capitals but my asthma is not just better but cured I know what causes it so I want TO SCREAM I WANT TO SHOUT you know the rest of the song . Its in the milk the bread the beef you heard it here first cheers Andy.

  • Thomas's consultant put celiac forward as one of the potential causes for him being so uncontrolled but a blood test has now ruled this out. I was hoping on Tuesday they may be able to do the skin test for the allergies but as he is ill again I doubt that is going to happen now.

  • Jenny, has Thomas ever had blood tests to check for allergies??

  • That's the results we should be getting on Tuesday although I think its only for a limited number of environmental things like tree pollens rather than food allergies. They were testing his blood for quite a few things I know we are still waiting for cortisol, immunoglobulin, can't think what else but its a fair few.

  • good luck for Tuesday Jenny, I hope you get some answers even if its continuing to rule things out. Waiting is no fun is it..

    Lynda x

  • It's def not fun waiting. I am keeping myself as busy as poss this weekend to avoid time to think about the what ifs. It is frustrating that nothing has shown up so far and I have a feeling it will be the same Tuesday its awful to keep putting him through all these tests. He just takes it all in his stride though and is so good most of the time. Just wish they could find something to make it all better :)

    How are you now?

    X

  • I've been better since being nil by mouth food wise (Since Christmas Eve). My lungs have been more stable - still crap LOL but stably crap! 8 weeks is the longest I've gone without additional antibiotics since July last year so its definitely helping.

    Go back to papworth on 4th, for results of latest CT scan, heart echo and lung function tests, and having bone scan on 4th to see if osteoporosis has deteriorated any more.

    Fingers crossed results show something and I dont have to go through bronchoscopy!

    x

  • Nope no spots yet (touch wood), knowing my luck if hes gona get them they will appear over the bank holiday weekend!

    Well we had the appointment today, but have come out knowing no more and have been made to feel like a liar. The whole time at the hospital upset me to be honest, first they didnt have his folder with all his notes, then we had to see the registrar instead of his consultant who obv with no notes didnt really have a clue! Basically over the last couple of weeks I have been giving Thomas an increased amount of ventolin typically 2-3 times per day, the number of puffs will vary depending how he is. It is lessening now but I still feel he needs it quite a bit I usually give it in the morning 2 puffs 5 mins before I give all his other inhalers and then again in the evenings/nighttime when he seems to have this horrible dry cough. I told the registrar this today and then when his consultant popped in I repeated it. They now want him to go in overnight for observations so they can see what he is like for themselves as apparently parents sometimes have a different view on what is going on to what doctors do!? I thought I was meant to give it for the cough, once I given the inhaler it calms it down and then goes, is this wrong? He never coughs til hes sick but its awful. Apparently Thomas also doesnt have a typical looking chest for a child who has required that many hospital admissions, whatever that means. He was quite well for the appointment as he had been asleep for 40 mins prior to it and had sat still for most of the morning. I am sure if I had chased him up and down the corridor like I usually have to do because he gets bored and tries to escape things may have been quite different. Infact on the way out running up the corridor he was coughin away haha!

    The MRI report hasnt been done so no news on that. The bloods dont show anything out of the ordinary although he does need a booster of his hib vaccine as apparently he hasnt developed immunity to that?

  • Hi Jenny, Im sorry you are feeling so upset about Thomas's appointment, its never nice when that happens. But it sounds really good that they want to have him in for observation, it gives them an opportunity to see first hand how Thomas's asthma affects him, and will hopefully improve things in the future. I hope you get the MRI results soon. For what its worth, my chest doesnt look typical either, the reality is that we dont all fit into little boxes and sometimes we will be something outside of the wide normal range that doctors and specialists see. I've been going to Papworth a couple of years and while things have improved, they are still struggling to get to the bottom of why things have deteriorated so much. Not because they are rubbish, far from it - just because my chest is complicated by a multitude of things, and its hard to work out what causes what.

    I dont blame doctors for questioning at times. Every time Im admitted to Papworth, it never fails to astound me, the lies and behaviour of some patients. They lie about doing their physio, lie about taking their meds, lie about smoking... etc etc. And many find it amusing for some strange reason. I dont do that, and Im sure neither do you, or a lot of people, but it must be difficult as a medic when you know that it happens.

    I wouldnt worry too much about their comment re having him in - look at it as a real opportunity for them to gain some first hand experience of Thomas's situation. That can only be a good thing right? Good news that his bloods are normal, does that include his adrenal function?

    Lynda x

  • i've never understood why people lie about meds and physio and smoking etc. its surely only gonna mean they get put on more meds that they dont need!?! Which is only going to make remembering to take them more of an effort, and make side effects more likely! The only thing im occasionnally a bit rubbish about is my physio (for a number of reasons) and im always honest about times i have missed/days ive needed to have a break from doing it because then my physio can help me work out ways i can do the exercises that cause me less problems, makes it much easier if you're honest! I have seen loads of people go out 'to get coffee' but my lungs really dont like cigarette smoke and i usually end up dying when they come back stinking of smoke - i cant understand *wanting* to smoke when you're lungs are bad, surely it'd just be completely misrerable!!!

  • I cant understand either, surely for smoking especially they must realise how obvious it is? I only use a ventolin inhaler now as am very very rarely affected, but two things guaranteed to set me off are cigarette and bonfire smoke.

    I really hope from the nights observation they get to see what I do and it gets us somewhere. I understand that things aren't always obvious but I feel disappointed we still aren't any closer to knowing whats up. If his asthma isnt allergy related does he really need to be taking the nedocromil?

    The appointment was so all over the place all I got was all his results are normal, I dont even know if that means all of them are even back. As his consultant is on ward rounds on saturday morning I will be fully prepared with a list of written questions for then. No more fobbing me off now! If its not asthma what is it!?

    The ventolin does help him and once he gets over the esacabations then his inhalers, the montelukast and the nasal spray seem to keep him on an even keel until the next thing sets him off. When he was first put on this combination of meds it was really good to begin with from the beginning of November until nearly Christmas we seemed to be getting somewhere. I think half the problem is since Christmas he seems to have picked up various things one after another, even my friends children who don't have breathing problems seem to have had illness after illness. There is so much going around.

  • Hi any chance someone can reply to my posts I have posted the fact that im clear of asthma

    after 30 years and I see you all suffering with inhalers just like I did . So I want to post this question if your dog or cat is ill sick runny poo lathargic what is the first thing you ask yourself , what have I fed him what has he eaten . I believe its the same for humans .

    I saw the asthma nurse today and told her my good news blew 475 instead of 250 on the peak flow she was pleased and then said at least you are taking brown inhaler correctly ; well I said yes but really im allergic to milk . And diagnosed my self on the internet as a celiac aswell . So I eat no dairy or wheat and feel like a new person maybe I was expecting a bigger reaction but what I cant understand is why people are not discussing or thinking of going without dairy just to try . Remember if your cat is coughing or trying to be sick its fur balls not dust mite . From Andy down to one puff of brown inhaler 2000 pounds spent over 30 years hopitalised twice on awful predisolone red tablets three times and now cured .

    ITS IN THE FOOOOOOD PEOPLE DISCUSS.

  • Hi any chance someone can reply to my posts I have posted the fact that im clear of asthma

    after 30 years and I see you all suffering with inhalers just like I did . So I want to post this question if your dog or cat is ill sick runny poo lathargic what is the first thing you ask yourself , what have I fed him what has he eaten . I believe its the same for humans .

    I saw the asthma nurse today and told her my good news blew 475 instead of 250 on the peak flow she was pleased and then said at least you are taking brown inhaler correctly ; well I said yes but really im allergic to milk . And diagnosed my self on the internet as a celiac aswell . So I eat no dairy or wheat and feel like a new person maybe I was expecting a bigger reaction but what I cant understand is why people are not discussing or thinking of going without dairy just to try . Remember if your cat is coughing or trying to be sick its fur balls not dust mite . From Andy down to one puff of brown inhaler 2000 pounds spent over 30 years hopitalised twice on awful predisolone red tablets three times and now cured .

    ITS IN THE FOOOOOOD PEOPLE DISCUSS.

    Its great that this has helped you, like Thomas I have been specifically tested for lots of food allergies, including wheat and milk, and as I am not allergic to either it would be silly for me to cut so many foods out of my diet. I am very very prone to lots of deficiencies and in order to be healthy and off suppliments I try to eat a wide variety of foods. In my personal opinion it is never a good idea to self-diagnose food intolerances, if nothing else, going without dairy 'just to try' can make you lactose intolerant - even if you weren't before, so its far better to be actually tested by a doctor if you suspect food intolerances may play a role in your asthma, it also means that if you are allergic to something very specific there will be no confusion (for example are you sure you havent cut down on something else by cutting out dairy and wheat, and it is this something else that you are allergic to?). Like I say, its a great thing that this has helped you but everyones asthma reacts differently to different things and on a website full of people with difficult to control asthma its possibly best not to describe a 'cure'. My asthma responds incredibly well to nebulised atrovent - often better than nebbed salbutamol, but i know most people respond better to salbutamol, and I know there its lots of evidence saying IV magnesium is only effective in a few people - but for me its my 'miracle cure' it completely fixes my asthma attacks almost everytime, but im not saying that it will help everyone. The food intolerances is no different, and whilst you may argue that you are not proposing that people use specific chemicals, cutting out food groups can have serious consequences for your health too. Especially cutting out dairy if you are on oral steroids as you will loose out on valuable B vitamins and Calcium which could damage your bones and/or make you anemic (i think B vits are the ones that improve iron absorbtion - sorry if im wrong). I would agree that allergy testing is very important, however diet will only help certain people!

    By the way Jenny, do you know whether Thomas' general ige was elevated? Mine was which apparently indicated im an 'allergic type of person' but they couldnt find any specific allergens - to me that would suggest im reacting to something obscure, but my consultant seemed to think because not of my obvious ige's were up that there was nothing of interest - bit strange! :-) how is T dong re spots today??? x

  • Hi

    Thanks for the suggestion but for Thomas his asthma is not because of allergies. He has had many blood tests including one to test specifically for Celiac and more recently one for environmental allergens both of which were negative. I can understand where you are coming from but for my personal view as its my son who has the asthma I wouldnt cut out dairy unless there was a proven link and only following advice from a doctor or dietician.

    Its good you have managed to improve things for yourself though, out of interest did they do any tests to confirm the diagnosis? :)

    Jenny

  • Hi

    Thanks for the suggestion but for Thomas his asthma is not because of allergies. He has had many blood tests including one to test specifically for Celiac and more recently one for environmental allergens both of which were negative. I can understand where you are coming from but for my personal view as its my son who has the asthma I wouldnt cut out dairy unless there was a proven link and only following advice from a doctor or dietician.

    Its good you have managed to improve things for yourself though, out of interest did they do any tests to confirm the diagnosis? :)

    Jenny

    Hi jenny I have been on the websites again and if you read them you would snatch the milk bottle away from your child very quickly . go to ask jeeves and put in the question does milk affect asthma come back to me when you have read at least the first three sites .

    Did you know that we are the only mammals that drink another mammals milk doesnt that sound horrible. Going for test for celiac next week I dont think that involves milk anyway let me know what you think of the data youll find . cheers Andy.

  • Jenny

    Hi jenny I have been on the websites again and if you read them you would snatch the milk bottle away from your child very quickly . go to ask jeeves and put in the question does milk affect asthma come back to me when you have read at least the first three sites .

    Did you know that we are the only mammals that drink another mammals milk doesnt that sound horrible. Going for test for celiac next week I dont think that involves milk anyway let me know what you think of the data youll find . cheers Andy.

    Andy, please listen to other people's views and experiences. Not everyone with asthma has allergies. And not every asthmatic with allergies is allergic to milk. Ask Jeeves is NOT a well recognised medical or scientific - or evidence based source of information. It does not show randomised controlled trials. As I said previously, I am glad to hear your asthma is improved. I also said previously that I am nil by mouth, and my diet does not include the things you mention as I am tube fed. I still have severe asthma. It is simply not appropriate or responsible to come on a forum and state views as fact particularly when you are telling people to cut whole food groups out of their childs diet.

    Like I said previously in my other post, I am interested in whether you have any medical or scientific evidence based research to back up your claims. If you have, I would love to read them - genuinely. But that means evidence as described above, not a collection of views which anyone with a computer can post on the web.

    Lynda

  • Jenny

    Hi jenny I have been on the websites again and if you read them you would snatch the milk bottle away from your child very quickly . go to ask jeeves and put in the question does milk affect asthma come back to me when you have read at least the first three sites .

    Did you know that we are the only mammals that drink another mammals milk doesnt that sound horrible. Going for test for celiac next week I dont think that involves milk anyway let me know what you think of the data youll find . cheers Andy.

    Andy, please listen to other people's views and experiences. Not everyone with asthma has allergies. And not every asthmatic with allergies is allergic to milk. Ask Jeeves is NOT a well recognised medical or scientific - or evidence based source of information. It does not show randomised controlled trials. As I said previously, I am glad to hear your asthma is improved. I also said previously that I am nil by mouth, and my diet does not include the things you mention as I am tube fed. I still have severe asthma. It is simply not appropriate or responsible to come on a forum and state views as fact particularly when you are telling people to cut whole food groups out of their childs diet.

    Like I said previously in my other post, I am interested in whether you have any medical or scientific evidence based research to back up your claims. If you have, I would love to read them - genuinely. But that means evidence as described above, not a collection of views which anyone with a computer can post on the web.

    Lynda

    Lynda I can tell you havent read any of the sites or you wouldnt be saying what your saying . Dont you find it funny that a lot of foods are linked dairy products gluten eggs nuts beef

    what chemicals are being injected or sprayed on crops ect ect could that not be the cause I,ve even invested in a britta water purifier maybe it was that and not milk in fact thinking about it I got that before stopping milk . Its in the water everyone stop drinking the water I,m going back on ask jeeves I reckon theres a link ....see ya Andy.

  • Apologies if this is getting off topic - hope it's still relevant! But just seeing Soph's last point about IgE: when my total IgE was tested about a year ago it was massively high at 1024, yet I didn't think I was an 'allergic' type of person (no hayfever, no allergic triggers that I know of and all my skin tests were negative). It may have come down since - I don't know if RBH tested for it but they did do a lot of tests and didn't mention it being high, though this doesn't necessarily mean it wasn't, they just vaguely said everything was ok.

    It's a bit rubbish that they've done nothing about Thomas's referral to RBH. I guess you can see what happens with the observation and if they're still being disorganised and getting nowhere then really push them on it (though if it happens - you may need to nudge RBH for an appt, they are not always the best admin-wise). I hope you manage to catch his consultant on Sat and get some answers!

  • Apologies if this is getting off topic - hope it's still relevant! But just seeing Soph's last point about IgE: when my total IgE was tested about a year ago it was massively high at 1024, yet I didn't think I was an 'allergic' type of person (no hayfever, no allergic triggers that I know of and all my skin tests were negative). It may have come down since - I don't know if RBH tested for it but they did do a lot of tests and didn't mention it being high, though this doesn't necessarily mean it wasn't, they just vaguely said everything was okay

    Hi Philomela

    I remember having a coversation with my consultant about this last year. He was explaining that allergy stuff is quite difficult because the clinical picture often doesn't correlate with the numbers on test results. He said he's known people with v high IgE levels have no or minimal clinical signs of allergy - and people with much lower IgE levels be really suffering with multiple allergic responses (ie nasal, eyes, respiratory). Could explain your lack of symptoms...

    Lynda :)

  • I have no idea whether Thomas's IgE was raised when I asked about the blood results I just got a sweeping nothing of concern type answer.

    We still have no spots but now we are onto day 14 so I think we have another week until we should be clear and out of the typical incubation period. As I know he has been in contact with someone who got chickenpox I phoned the hospital to check he could still go in Friday and they said no, but he can be seen Saturday during the day. Obviously if he develops and spots between now and then I have to phone back.

    I had an asthma attack for the first time in years this morning. I have cough varient. We have a pub near our house being converted to a tesco and they have been having bonfires every day. Despite us keeping the windows shut you can still smell the smoke indoors and its really been irritating me. Perhaps Thomas is affected too. Off home this afternoon to try for a nap I feel shattered.

    I now have a note book and am compiling everything I want to ask. Luckily Thomas's dad should be off Saturday and able to come with me it will be nice to have him there for support.

  • Hello Andy,

    I notice that you live in Cornwall.

    When you do your internet searches, are these UK websites that you visit or US ones?

    Just curious because your spelling of Coeliac is the US spelling - Celiac.

    It can be dangerous to self diagnose such a serious illness.

    If you have excluded all wheat and all other gluten containing foods (quite a challenge) for more that 6 months then a test for coeliac disease will not show anything as the digestive system will have started to heal itself.

    I don't have cow's milk or gluten in my diet yet, I am a severe brittle asthmatic, on permanent steroids, yes those horrible red prednisolone tablets, all the time, and lots of other specialist medications for my asthma - I am in a steady state of instability. I am chronic all the time and I am prone to sudden severe asthma attacks which are life threatening. there are quite a few of us here in the same situation and wish a change in diet would 'cure' our asthma.

    Currently, there is no cure, only very good control and in some people they can grow out of it or it may become dormant for a while......

    I cut out milk and gluten due to digestive issues, not really connected with my asthma.

    The only food I must avoid is eggs - I am anaphylactic (severely allergic - and yes I was properly tested) to eggs and yes, this would seriously affect my asthma.

    Just some food for thought.

    Kate

  • Hello Andy,

    I notice that you live in Cornwall.

    When you do your internet searches, are these UK websites that you visit or US ones?

    Just curious because your spelling of Coeliac is the US spelling - Celiac.

    It can be dangerous to self diagnose such a serious illness.

    If you have excluded all wheat and all other gluten containing foods (quite a challenge) for more that 6 months then a test for coeliac disease will not show anything as the digestive system will have started to heal itself.

    I don't have cow's milk or gluten in my diet yet, I am a severe brittle asthmatic, on permanent steroids, yes those horrible red prednisolone tablets, all the time, and lots of other specialist medications for my asthma - I am in a steady state of instability. I am chronic all the time and I am prone to sudden severe asthma attacks which are life threatening. there are quite a few of us here in the same situation and wish a change in diet would 'cure' our asthma.

    Currently, there is no cure, only very good control and in some people they can grow out of it or it may become dormant for a while......

    I cut out milk and gluten due to digestive issues, not really connected with my asthma.

    The only food I must avoid is eggs - I am anaphylactic (severely allergic - and yes I was properly tested) to eggs and yes, this would seriously affect my asthma.

    Just some food for thought.

    Kate

    Hi Kate I,m a bad speller reading everyones posts perhaps I was a mild asthmatic . If you go on ask jeeves you will get different sites . I guess I am agry that it wasnt picked up earlier from all the asthma nurses I,ve seen over the years . Where theres blame theres a claim . I dont know what brittle asthma is but if you can isolate what is restricting your airways which , okay in my case was milk , then surely its best to stop . But my intuition tells me that asthma and cancers are linked to food ; you only have to watch embarrasing bodies or read gillian mckieth the poo doctor to find out . get on ask jeeves and tell me what you think cheers Andy.

  • Oooh that's what I forgot to ask today about the IgE levels.

    Well today found out next test is sweat test to check for CF but his consultant says its more to rule it out than thinking he has it he is also going to make sure that the X-ray for bone age is arranged. He says the endocrinology consultant will be discussing the cortisol and other endo results with me and thinks she will do a synacthen test. The MRI results aren't back they have been sent to a specialist at a London hospital to look at.

    I feel a lot more reassured after today that his consultant does believe what I am saying, am fed up of being made to feel like a hypercondriac.

    I spoke to him about allergy testing, after the RAST test confirmed he is not allergic to environmental allergens he doesn't feel there is any need to do food tests as he doesn't think his asthma is allergy related at all.

  • Hi Jenny, good to hear they are covering all bases and doing the sweat test. Hopefully they have also done the CF blood test - I only had the blood test, as the sweat test didnt work on me LOL they were all completely perplexed! From my understanding, the sweat test is more sensitive.

    Im not surprised they are likely to do a synacthen test, its sounding like they really do want to sort this out for him. Hopefully soon you will be a bit closer to knowing what is or isnt happening when you have the rest of the results.

    Believe it or not, not everyones asthma is allergy related....! ;)

    Glad youre feeling a bit better about things,

    Enjoy the Easter break,

    Lynda x

  • Jenny - glad to hear it seems like Thomas's consultant is actually taking on board what you're saying; for me personally I do find even if you're not sure what's going on it's better when you feel you're getting through to them and being taken seriously! I hope they find something useful from the tests to move things along, though nothing bad.

    I remember having a coversation with my consultant about this last year. He was explaining that allergy stuff is quite difficult because the clinical picture often doesn't correlate with the numbers on test results. He said he's known people with v high IgE levels have no or minimal clinical signs of allergy - and people with much lower IgE levels be really suffering with multiple allergic responses (ie nasal, eyes, respiratory). Could explain your lack of symptoms...

    Lynda - thanks for that, I hadn't realised! I have to say I was very surprised when it came back so high because of my lack of allergic symptoms and also not having severe asthma, so this does explain it. I was a little relieved mind you because it was making the consultant stop and think about what was going on and I felt like it was something concrete and meant they weren't going to dismiss it as being all in my head! I now can't remember what he said exactly but think did suggest to him that there was some form of immune reaction going on though he wasn't sure how it all fitted together.

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