Thomas is getting through a lot of ventolin at the moment, approximately 2 inhalers in the last month. Its rather frustrating considering I thought we were finally starting to get somewhere. Its only really in the last month... has anyone else found the changing weather a problem lately? I am trying to work out what affects him and not really having much luck so far.
On a plus, got a phone call today, they are bringing his MRI (of his brain and pituitary glands) forward to tomorrow. I may be a bit hopeful but am keeping my fingers crossed they will have the results for his appointment next week.
Thanks
Jenny x
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The change in the weather - up and then back down again - has really affected me. Also the temperature and humidity seems to be quite variable at the moment. So, he's not alone in finding things awkward with this weather!
On the MRI - they should have the results in time for his appointment. Fingers crossed for you all - though I'm not sure what the best outcome would be. Given how unstable he is it might be better if they find something they can treat!
Well MRI all done, although they wanted to get a closer look at part using a dye. Unfortunately, due to his uncontrolled asthma it was decided this was too risky. I am wondering why they wanted to do this. They confirmed I should get the results at his appointment next week.
Hi Jenny, I think the use of contrast for pituitary scans is quite usual, but it can make you feel a bit weird (it makes me feel sick and a small but significant number of people are allergic to it). So if you just mean that they were umming and ahing about using contrast, I wouldn't read much in to that.
For a pituitary scan they usually scan once without and once with the contrast - it just shows a bit more detail on specific areas, but if he has a significant problem then I'm sure it'll still show up on the non-contrast scan.
Good luck getting the results,
C
Seasons change definitely affects my eldest. Especially,as curiouser said, when it goes up and down. Like at the moment where one day is warm and rainy then cold and dry).
Hope the mri results go well.
All this up/down weather is affecting my daughter too. And me and I haven't suffered with asthma since my teens (i'm 34 now!).
Hope things settle down for him. Have you had the results yet?
Well we had his appointment this morning, wasnt quite what I expected! First they didnt have his folder with his notes as apparently that was missing and would probably turn up hmm. Then we had to see the registrar instead of his consultant, who as there were no notes didnt really have any clue what was going on so had to go through his whole history. His MRI results arent back, the blood test for allergies was negative for airbourne allergens, nothing else major on his bloods apart from he needs a booster of his hib vaccine as he for some reason hasnt developed the immunity to it despite having all his injections as a baby. Well their latest idea is I have to take him in for overnight observation because as they put it, parents sometimes have different views to whats going on to what a doctor does?! Ok then so is that their way of telling me I'm making it up? Feel quite disappointed after that appointment tbh, ok so my son may not fit what typically happens but its not right! I give him his inhaler as I have been directed. They are also arranging an x-ray to check his bone age or something. The appointment was so all over the place I feel completely bewildered about it all.
A question for anyone with cough type asthma.... when you are coughing a lot and require your inhaler do you get intercostal recessions or pulling in around the neck? I have been giving Thomas the ventolin when he starts coughing which is typically during the night, after running around a lot and after tantrums. He doesnt have intercostal recessions or pulling in around the neck but the inhalers stop the cough, is this wrong? I am now doubting everything feel as though I am doing something wrong.
Jenny x
Jenny, I can't really help much. I don't get the intercostal recessions (maybe more a thing in children?) but my understanding, and I might be wrong as I am not a dr or anything, is that this is a symptom of a severe attack in a child so if he's not got that but is still coughing it doesn't mean you shouldn't do something like give him his inhaler, just that it's not so much 'call an ambo now' as it would be if you did see that, though obviously you'd need to if he's really struggling - but then you probably know all this already!
But just wanted to say I do completely get where you're coming from with the post-appointment feeling! tbh it sounds like a bit of a shambles on their part and I'm not surprised you're feeling confused, but that's their problem not yours. I had a bad appt on Wed and came out of it feeling very similar with the 'can't they just DO something productive?' and feeling confused/bewildered and rather like they were blaming me, so I just wanted to say you're not alone, it's completely understandable that you're feeling like you're doing everything wrong but from my massively inexpert view as neither a doctor nor a parent, you aren't! I think they just need to get their act together but like you said on Soph's post, it's so easy to think of things you wanted to say later because at the time you feel confused and wrong-footed and not able to be coherent. Sometimes it helps me to hear someone else say yes, it is reasonable to feel that went badly and I have no idea what to do now so you know it's not just you.
Best of luck and I really hope they do get their act together and sort Thomas out. If not, and this may already have been suggested (I have an idea you mentioned it), perhaps it's time to ask for him to be referred to a specialist centre?
Well I thought at this appointment his referral was being done and it was mentioned about it but I don't think anything has been done.
On a positive I think we may be turning a corner there was hardly any coughing last night and he only woke up once which is a massive change from the previous night. Although he has been coughing again since he woke up but not too much. So I may look like a nutcase Friday but I don't care now I know what he's been like and although it would be nice for them to see I'd rather he wasn't still suffering. It's all mostly since his cold at the beginning of march he's just taken so long to get over it, infact every time he gets ill it seems to take ages for him to get past it. It's horrible to be made to feel like a hypercondriac parent been here so many times and it is awful.
Sorry you didn't have a productive appointment.
I've been told to give my eldest his Inhaler if he's coughing constantly. If he can't talk in sentences because his coughing is so constant he can't catch his breath that's when we would get an ambulance. If the Inhaler doesn't help at all we call an ambulance. His chest is nearly always clear and he doesn't wheeze but coughingIis his symptom that his asthma is bad. I had one dr at a&e tell me not to give his Inhaler just for coughing which I ignored after speaking to his asthma nurse. I can tell the difference between his asthma cough and an infection cough not only by the sound but by the amount he coughs.
My youngest has been well controlled for a couple of months now *touch wood* but infections still take him ages to get over. A simple cold causes him to be extra tired for about 4-6 weeks.
His cough is very similar to what mine gets like when my asthma starts up so I just assumed I was doing right. His cough is like something is irritating him, he coughs quite a few times stops and then it starts up again and repeats until I give him his inhaler and then it calms down and stops. He mostly gets it when hes been running, screaming etc in the day time or during the night just lying in bed. Its not like an infection cough its very dry.
I think this is Thomas's problem his recovery from any deteoriations in his asthma take so long to get back up to what is ""normal"" for him. He was ill over his birthday 2.5 weeks ago and his breathing is only just getting back to the stage where we aren't using the ventolin so much, until the beginning of this week it was 2-3 times a day the dose varying. I wish I had taken him to the doctor sooner and got pred as I think he would have picked up sooner as he has done in previous esacabations.
Hi I am new to this forum, but my son who is now 11 has had asthma since he was about 2 years of age. It used to be well controlled but since Septemeber we have had constant battler. He had been taking pulimcort for many years, with montelakust and ventolin as required with predisclone steroids when needed particularly when he was younger. But over the years, we have been able to reduce down the medication and during the summer months, he was medicine and symptom free. However, this year has been a totally different story and I am really worried about his asthma. The doctors told us that pulmicort was no longer being made as an inhaler but was now in a powder form - this was last July. My son started taking this and then developed an allergic reaction to the powder, sore throat, rhinitis and is now on a nasal spray for this too. Since September, they have changed his medication twice more, onto flixatide and more recenlty, seretide. However, although during the day his asthma is ok, as soon as he exerts himeslf in PE, sport or any kind of exercise he cannot breathe and has to take ventolin, sometimes up to the max 10 puffs. This is getting more frequent and to be honest until this year, he has never ever had a problem with any form of exercise and has never had to take ventolin to carry out any sporting activity, unless he has been unwell with a virus. This is really frustrating for my son, and upstting for him. He is starting to believe that he is unfit and is worrying about now doing the sports he loves. I feel so frustrated also, really hard to get a GP appointment and had to fight for his hospital appointment to be moved forward because of his asthma not being well controlled any more. This year has been the worst ever. Sorry I don't have any advice or positive input, but just wanted to let you know that I feel that this year - maybe the climate also has had an impact on my son. ALso I have had a chest infection for the past 6 weeks which I have had 3 lots of antibiotics for and it is not going. I have had predisclone stereoids too and I have never suffered from asthma, So don't know what's going on - or what's in the air.
Well for the first time in months Thomas's asthma actually seems to be under some control now. Since July 2012, we had been in and out of hospital and didnt seem to be getting anywhere until the last 2-3 weeks or so. We havent actually done anything differently or changed anything so all seems a little bizarre considering hes been tested for environmental allergens as well. BUT I am not complaining its been a long 8 months!!
It does concern me a little that despite being much better than he has been in months he wont walk far. He will usually walk for about a minute then demand to be carried then after a while he will have another attempt at it before asking to be carried again. He doesnt seem wheezy. Before his asthma got worse in July 2012, he used to run everywhere never wanted to be in the buggy or be carried.
I have been on an upward struggle with the hospital today. Turns out Thomas never developed the immunity following the hib injections all babies have with a booster at 12 months. I have been waiting for the hospital to send a letter to the GP, as they wont do it without this. I know its only been 3 weeks but to me its quite important, the HiB vaccine is for things like Epiglottis, Pneumonia and Meningitis (i believe). They dont know why Thomas didnt develop the immunity as most children do but if he has the booster and still doesnt have the immunity they will go back to looking into problems with his immune system. We still dont have the results of his MRI either nothing is ever quick!
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