Need some advice please :)

hi this my first post here so hope iv put it in the right place. I'm getting a bit worried about ds2 he's just coming up to 3 and last October we finally got a diagnoses of asthma (I am asthmatic also) and some treatment. When he was 10 months old he started with feeding issues on days when he was wheezy & chesty this has lead to him being very underweight and no matter what food I give him he's just not gaining in 2 years he's put about 2lbs on and actually only weighs 6lbs more than my dd who is 6 months old. Around this time the night tune cough started and struggling to get over a cold he also started to go blue round the mouth when he is poorly or running around :( he was sent to paeds at about 15 months who checked his heart (luckily this was fine) but told me no way could it be asthma. anyway last October the night time cough started again with the cold weather and he was still going blue so back to gp who gave salbutamol to see how we went for 2weeks then after the 2weeks he was still up coughing and going blue so the gave him clenil 50 2 puffs twice a day and things started to improve. He has also been given an antihistamine over the summer as I noticed he was struggling more with the pollen and itchy eyes and nose was also told that at first sign of a cold he's to b seen by a gp as his inhalers don't seem effective and ends up having a lot of blue inhaler with little to no effect. I have also noticed that this week when he's running round his mouth is blue but now when I stop him he's very out of breath and is obviously working quite hard to breathe. I give him his blue inhaler and sit him down and this has so far done the trick. I should also mention that when we started the brown inhaler the blue mouth stopped. He's a little soldier bless him and just wants to keep up with his big brother (age4) so doesn't slow down when he's starting to struggle he doesn't complain (except for with the night time/cold weather cough but that's only when it's so bad hes being sick) he's starting preschool in a couple of weeks I know the staff as my oldest has just left but I'm just concerned about him soldiering on and not letting anyone know he's struggling. I'm also concerned as the weather is likely to change soon if anyone has any tips that might help him? He has a scarf for cold days and a v shape pillow to help him stay a bit upright at night and we have an air purifier also do the wet rag on the radiator but just in case I'm missing something. Also does is sound like we need to go to asthma nurse as he's started getting blue mouth and put of breath when running round? His weight dropped down the graph again this week health visitor is still weighing on Drs request but she wanted to leave it another month and weigh again before getting gp involved I'm not sure if I'm over reacting by thinking that by end of sept the weather will likely already be damp and cold and he's likely to end up catching something which will make his weight drop further?

Sorry if that's a bit long winded hope iv not waffled and u can understand it also I appologise as this prob sounds v trivial as I know some kids really struggle and have multiple hospital admissions I would just b v grateful of any advice. Tia x

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  • Hi

    I thought I would reply my son Thomas who is 3.5 goes blue a lot and he has also been checked over and there is nothing wrong with his heart. He doesn't seem that bothered by it either although it can happen when he's not breathless as well as when he's struggling.

    Thomas's bad season has already started, we have found the weather changes can really affect him.

    Is your son under a consultant at the hospital? I am assuming you are as you have a diagnosis - when is your next appointment? Thomas attends the respiratory clinic to see his and there is a specialist respiratory nurse who we also see every time we go.

    It scared me about letting Thomas go to nursery as he doesn't stop until he is really really ill and I was terrified the staff would miss it. He only goes mornings though and that is usually his better time and if I am worried I don't send him.

    One of Thomas's consultants referred him to the dietician because he was underweight and we see her every 6 months. He is 12kgs and to be honest I am not worried I know he puts on weight when he isn't ill. I think they got a bit carried away with that referral. No matter what you can't make an ill child who isn't feeling like eating want to eat. She did advise us to feed Thomas full fat foods, with snacks in between meals to help. I use to give petit filous yoghurts but she told me to find some creamy ones as they have higher fat content.

  • hi Jenny thanks for replying im sorry to hear ur son is suffering.

    my son isn't under a consultant gp made diagnosis but being asthmatic myself it's something I'd known for a long time I was just waiting for a dr to agree which of course they don't like to when they're so young. His triggers so far seem v similar to mine cold weather, colds etc, exercise & pollen so I'm keeping him well away from hazelnuts and hamsters to b on the safe side. He's been lucky and managed a good run over the summer but seems to have struggled this week saw gp yesterday who said pollen count must have gone high again as lots of ppl have struggled this week. Ds2 doesn't put weight on even when he's well we have recently discovered that he's lactose intillerant but can manage a v small amount of cheese & yoghurt but no milk as iv cut the milk out and his stools have firmed up we r hoping he may take more from the food and put some weight on he's been on a high calorie diet for 2 years now but has hardly put anything on at all(was 19lbs at 9 months is 23lbs at almost 3) he generally eats v well and isn't fussy and if he's off his food I can usually get him to eat homemade bacon & lentil soup he loves it anyway but it's just easy for him to eat if he's bunged up. Gp is hoping a bit of weight may go on him now he's not drinking milk so food spending longer in his bowel and has said if he gets a cold he's to come straight in same for if the cough returns when the temperature drops.

    He's only going to preschool one morning a week and ds1 has just left there to go to reception (he's not asthmatic) so I know all the staff I'm just worried they will think he's ok when he's not as he can b running round fine one min then u look a min later he's still soldiering on running round but hrs out of breath and got blue lips the next. I'm just bracing myself for the winter iv booked his flu jab which is actually a nasal spray hopefully this will b less traumatic for him

  • Is the nasal spray for flu a new thing as Thomas had injection last year?

    I just assumed you were under a consultant as we found most GPs reluctant to diagnose Thomas and even treat the asthma symptoms because he was so young. I am asthmatic too, and also have hayfever, ezcema and allergies but even with this being known it was a struggle to get a firm diagnosis. It wasnt until one admission when the Respiratory Consultant happened to be on ward round we finally got it and have been under his care ever since.

    Have you had allergy testing? Do you think he could have other food intolerances?

  • Everywhere else seems to do the 2jabs a month apart but my surgery has gone for the nasal spray I'm a bit concerned as iv read it's a live virus in the spray where the jab is deactivated and can't seem to find much info on it other than what's on Nhs website but I know if I quiz the Drs they're just going to say it's this or flu which obv I don't want him to get. My gp is not keen on referring other ppl I know whose children are at a different surgery in the same town r under respiratory consultant but my surgery seem happy to treat him. Think as it's Drs that treated me growing up and kept ummming and ahhhing had me ? Asthma until I was 10 by which point really poorly they thought they'd nip it in the bud as it was the second winter same symptoms and he was visibly struggling when I took him down that day. We have nebs at our gp surgery which was good for me growing up as meant I avoided hospital admissions also I'm literally a 2 min run from Drs so I can get him there much quicker.

    Me & ds2 have hayfever too but luckily so far escaped the eczema we do local honey for the hayfever and ds2 had benedryl which seems to help noises if the honey does anything but certainly doesn't hurt to try. It would surprise me if he had other intollerances/allergies same with me but neither of us have either had allergy testing I would feel happier if they could tell me thing he is to avoid as I only found out I react badly to hazelnuts when I was 14 on holiday in Belgium and ate nutella very scary experience as was last day so we were driving home and I had to be seen at Calais as by the time we got there I felt like I could hardly breathe at all. But don't suppose they can refer for allergy testing just cos I'm scared to give him stuff lol I did c a paediatric with ds1 when he was about 7 months old as he had reflux and lactose intollerance noises how true it is but he said to me pale ppl r more prone to allergies & illness me and all 3 of my dc r pale so hoping that was tripe :) ds2 is being weighed again at end of sept and they will do dietician referral if no improvement in his weight by then. Obv I don't want him being poked at with needles etc if he doesn't need it but I am struggling with this wait and c how he goes

  • Thomas had allergy testing at the respiratory clinic to try work out what it was that affected his breathing but doesn't have any allergies. We are still at a loss to explain some of his attacks, we have identified weather and cold/virus illnesses but sometimes he can just be set off by unknown reasons. It is really difficult and scary having an asthmatic child at times.

  • Awww bless him ds2s attacks have so far been explained exercise cold air illness pollen it must b awful not knowing the cause. It is very scary tho my dh doesn't seem to worry too much but then he's not asthmatic so has never had the experience of struggling to breathe think cos I know how awful it can b it's worrying me even more, we have been lucky and not had to whip him to hospital yet so dh just thinks my preventative measures r an over reaction. I'm petrified of him being given something with hazelnuts in as most of our family both sides don't really understand I'm the only asthmatic until ds2 (there's eczema and hayfever on my mums side) I still won't let ds1 eat them as even tho he doesn't seem symptomatic he's only 4 so I'm not 100% it's not going to crop up dd had croup at 3 months old and is very snotty and has been all summer so hoping she will outgrow this as her tubes get bigger no one warns u about the constant worry when ur having ur first do they

  • Haha nope but luckily my first was ok after her initial SCBU she has been mostly fine. She has no asthma, allergy or hayfever symptoms although has slight ezcema. Since Thomas has even born its been quite a wake up call he is under 5 different hospital departments s we always seem to be up there for something. Although it seems to be a constant battle for everything. When he was a baby I insisted to the GP and health visitors there was something wrong with his breathing and was made to feel like a complete hypercondriac. Turns out he probably actually had primary bronchomalacia so perhaps they should have listened to me I was the one up with him all the nights I was too scared to sleep.

    Gosh my OH still doesn't think it's serious and in the past year Thomas had 8 admissions including 2 on HDU and 1 on IV salbutamol. I think it's just a man thing! He seemed shocked when I said I wouldn't take Thomas to his mums cos she smokes in the house ha!

    I have to admit I don't come on here that often anymore as I chat to two other mums i met on here about any concerns I have via Facebook. It got a bit quiet on here recently. So apologies if I don't reply straight away :)

  • My parents don't get y I'm so funny about smoke cos in their words ""we smoked and ur alright"" yeh worked out well that one my dad has copd and iv spent most of my life struggling with my chest tho I'm my own worst enemy I hate letting anyone know I'm struggling I'm either just stubborn or an idiot lol so when I do say I'm bad I'm really bad but then everyone will just say ahhh ur alright it's only a cold my dh didnt even take me seriously when I had pneumonia last December and was heavily pregnant I think that's wots scaring me with the winter colds just go on ur chest so quick with asthma worried about him ending up like I was last year :(

    Bless u sounds like ur had a hard time my ds1 was born by section and was so full of fluid I was convinced he had asthma luckily tho he grew out if it and has touch wood seemed fine since he was 2 so I get y they say to wait and c but Some children really struggle and they should at the very least refer to respiratory specialist if they don't want to treat or make a call on it. They left me til I was 10 by which point my asthma was massively out of control it's prob y I'm on it with the kids and paranoid about ds2. It's so frustrating when ppl don't listen to u should never underestimate mothers instinct!

    Don't worry about delayed replies :) I'm just grateful to hear from someone feel like I'm starting again as my asthma was under control for about 8years until I got pregnant with dd then it's just gone haywire so I should know what I'm doing with ds2 but I'm starting from scratch with both of us if that makes sense feel like a fish out of water lol

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