Well tomorrow is results day

Well tomorrow is results day (hopefully as long as they all back). I am feeling quite nervous tonight about what they may or may not show. I wonder if we will get a reason for why they cant get his asthma under control, and if there is something else they are overlooking.

He still isnt great and yesterday let the kids play out in the garden and he just coughed constantly and even asked to go in, not like him he loves playing out with all his toys and playhouse. Since I started giving the montelukast less his aggression and temper have improved so wondering if I should stop giving it all together. To be honest since I started giving it less frequently things haven't changed that much so wondering if it was making that much difference.

I am still contemplating asking to be referred to a more specialist centre like the Royal Brompton but dont want to offend his consultant as he has been brilliant!

Sorry a bit of a ramble on but just need to get it off my chest.

Jenny x

18 Replies

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  • Hoping you get some answers and possible better orientation for the best treatment your son needs. Let us know how you get on. Take care.

    Rose xx

  • I feel incredibly nervous and worried already I just want to get this out of the way. For the last 3 weeks I've constantly thought about it and worried its so stressful. If the tests don't show anything I think it will mean he will have to have the MRI :(

  • Hi Jenny,

    Really, really hope you get some answers (we were at GHSH with my son for tests and have to wait for results so know how that feels) and are able to move forward treatment wise. If not, i'm sure cons would understand that you just want whats best for your child and wouldn't be offended at you asking for a referral to the RBH.

    Best of luck, let us know how it goes.

    xxx

  • GOSH not GHSH!! lol x

  • Does ur son see respiratory specialists at GOSH? I am not 100% sure where is best hospital to ask for a referral to as he's only going to be 3 next month.

  • Sorry Jenny, should have said its not asthma related (he only has mild asthma, i'm the one with awkward lungs)! He has reflux and cows milk protein allergy, just trying to find out why!!

    I can't rate GOSH highly enough, his previous local cons was rubbish but they really think outside the box and llok at the big picture at GOSH and needless to say all the staff are amazing when dealing with your child, makes everything much less scary.

    x

  • You are being referred to RBH aren't you? I think tomorrow I will enquired about a more specialist centre with his consultant.

  • Hope you get the answers you are looking for Jenny. What test results are you getting?

    Lynda x

  • He had blood tests for full blood count, urea & electrolytes, thyroid function, liver function, ca/phosphate/Alb, blood gas, immunoglobulin levels, mg, celiac screen, CPR, ESR and cortisol levels. Also urine tests for something else can't remember exactly what but its more to do with his excess drinking.

  • Well the celiac screen, liver, kidney and thyroid function all came back fine and he couldnt see anything too worrying on the results that have come back so far but there are still a few outstanding. One of those still outstanding is the one I am a little concerned about, the cortisol levels. He is still concerned though and has asked us to get some more blood tests done and he has also referred Thomas for an MRI of his brain and pituitary glands bit scary as it will have to be done under GA. If he does not get to the cause of the difficult to control asthma soon he says he will refer Thomas to RBH. He has also been referred back to the Endocrine clinic as he was borderline on the water deprivation test they completed in February 2012 and feels it needs to be looked into more with the problems hes still having. He hasnt grown in height in well over 8 months now and this could also be related. x

  • Hi Jenny,

    Have you any more news re results??

    I haven't been on this site for a while but can empathise massively with your worries..

    My daughter (now 4) has had the last couple of years filled with tests. She has had all the tests you have mentioned, along with CT and bronchoscopy under GA. I can remember the fear leading up to the GA but I'm so pleased she had it as it was useful.

    Maddie had inflammation and scarring on the lungs shown. All the other tests came back normal. Apart from cortisol. I was told the levels should be approx 700 for an early morning cortisol test, however Maddies result came back at just 16!! We were shocked and devastated. It has since reduced further to 0!!!!! Her adrenal glands have shrunk and are not even visible on scans now either.

    It is a hugely scary process and one I often reflect on. I will never forget that initial fear and darkness when we were told. (We had a call at 10pm from the hosp and told to go straight in!!) I spent many a late night crying on here. At the time I had support from other AUK members saying we would get through this and it would become more manageable. I didn't believe it then, but sure enough it is easier now to deal with.

    Your son sounds so like maddie was. She would give up playing despite wanting to. It's heartbreaking to watch. :-((

    However, now..maddie is on maintenance pred and has been nearly 2 yrs. she has just gone onto prophylactic antibiotics too. She has a referal to RBH too.

    I really hope things settle for you, and become easier to face/deal with. It's so traumatic feeling so helpless as they test your child for all these things. So many 'what ifs'.

    Just wanted to send you massive hugs. Sorry I I've rambled.

    Lots of love xx

  • Hi

    No I won't get any further answers now until his next appointment towards the end of march. It's the cortisol I am quite concerned about to be honest. Has your daughter been diagnosed with addisons?

    I asked for a broncoscopy as it was previously mentioned but his consultant wants to do one thing at a time for the moment, so the next thing is the MRI and another set of blood tests. I thought as he would have to be under a GA for the MRi they could just get both done, oh well.

    Is your daughter also seen by an endocrine specialist?

    Jenny x x

  • Hi Jenny,

    Maddie hasn't been diagnosed with Addisons as yet. Apparently her diagnosis at present is 'Adrenal Insufficiency/failure'. They are unable to fully test her for Addisons or any linked Endocrine complications until her Asthma is stable enough to reduce her Presnisalone dose. It doesn't look like that will be done in the near future unfortunately. (She was born with a thyroid issue which is obviously linked but they still can't fully investigate the endocrine system while on her current pred dose)

    It could be merely that her steroid dose has damaged her adrenals. She's had Presnisalone regularly since 6mths old and then constantly for nearly 2 yrs. She also has had nebulised steroids regularly too.

    She is under 3 consultants; a respiratory consultant, an endocrine consultant and a general paed. She was referred to the endocrine team when she went into Adrenal crisis 18mths ago.

    Was it an early morning cortisol blood test he had?? I'm sure if it was a dangerously low reading, then they would contact you. We had maddies done on the Tuesday morn and was told to call on fri for the results. However 10pm on the Tuesday evening, the hospital called and admitted her immediately.

    Hope that helps. Feel free to ask any questions. I can remember how it felt when maddie was getting the results back and the uncertainty around it all.

    Xx

  • I would hope they would but when my sister had hers towards the end of 2012 she didn't get a call for several weeks following her blood test, but when she did it was similar and she had to go in immediately. I can't see to be honest that they will be able to test Thomas for much his asthma is so badly controlled. Even brushing his teeth this evening set him off but 4 puffs of the ventolin seems to have settled him. He is suffering really badly with the cold at the moment. We are away for the weekend at center parcs but every time we go outside he is coughing really badly.

    What medications have they got Maddie on for her asthma. Thomas's consultant hasn't put him on a maintainance pred dose yet but he takes 250mcg seretide in morning 125mcg at night, Nedocromil inhaler twice a day, flixonase in evening, montelukast and ventolin. He just doesn't seem to have any immune system and always gets ill.

    I find the time its all taking very frustrating I have said for ages his drinking isn't habitual and isn't normal I mean how many children would happily drink 3 litres a day of water? If we don't give it the result is scary and terrifies me he's like a child possessed! We have been perusing all of this with various consultants and doctors for probably 15 months now.

  • Maddie drunk, and still does, loads!! We measured it and it was 2litres just through the night. At least another 2 during the day. She was so desperate for fluid that she even drunk out of the dogs bowl on one occasion. She would lick condensation off the windows too. It was like a drug to her bless her. :-(( In the end they admitted her for a fluid monitoring 24hrs. They measures what went in and what came out!! She was in nappies then so they literally measured her nappies!! She was borderline so discharged!!

    She still drinks loads but we are strict with her and monitor her carefully. I think montelukast can make them thirsty. Pred definitely can!! As do all the inhalers.

    At present (and it changes regularly), just for her asthma, maddie takes; maintenance pred, prophylactic antibiotics, fluticasone, atrovent, serevent, montelukast, salbutamol, saline nebs and physio. These are all daily at present. During the summer, a whole host of antihistamines are thrown into the equation too. We also measure her blood sugar levels. It takes forever several times each day. But it's worth it as I can now say, that mostly she has a quality of life.. A couple of years ago she was merely existing!!

    I hope you manage to have a good time at centre parcs. I'm sure the weather will be warming up soon. Xxxx

  • Thomas was drinking 4l a day they noticed it when he was in hospital the first time and that's why they decided to do the water deprivation test. He was only 22 months at the time so they also had to weigh nappies. He wasnt allowed fluid for the duration of the test and they measured his urine osmolality and sodium but he stopped weeing after a certain amount of time so they had to stop the test but because of his results said it was inconclusive. He was only on a ventolin inhaler which was very occasional back then as well so it can't just be the meds he's on now :( we have cut it down a bit but can't seem to get much less than 2.5-3 litres a day.

    We now only give the montelukast every other day as we found Thomas had bad mood swings having it every day he became a mini jekkyl and Hyde and it was awful things seen much better now. I do wonder if the meds Thomas is on are the best for him hence my asking what Maddie is on. I feel now I need some reassurance and maybe being seen at RBH where they have specialists used to seeing difficult to control asthma I will get that.

    Bizarrely Thomas's asthma has only been so severe since August. Before that he hasn't been taking his brown inhaler since April and barely using his blue one either. But since August his meds have just been upped and upped and still we have no control. He hasn't been well enough in between being ill to have a allergy test so now they are doing a RAST blood test for the allergies which will hopefully tell us more but I'm not sure his is allergy related.

    This is my third time up with him tonight and he quickly goes back to sleep after I fill up his beaker and change his nappy but I can never get back to sleep very quickly. I always feel so tired and bad tempered at the moment, probably another reason I'm not finding things very easy to deal with. Does Maddie still wake up a lot in the night now?

  • Hi,

    Yes unfortunately Maddie still wakes up. :-/ She coughs and coughs until she finally brings up mucus. This can take up to a couple of hours. Sometimes a couple of times in one night!! It's exhausting. My other daughter is asthmatic too so if they are both bad, it's a nightmare!! Thankfully, due to the saline and physio, it's really helped Maddie with the mucus and she seems to be sleeping a bit better than before....touch wood!!!!

    Can u call your cons and talk things over if you are not happy with things?? I'm sure they would be ok with that. Or try the nurses on this site.

    Hope things settle soon and you get answers. Xx

  • My sister saw her consultant yesterday and they said she has got adrenal insufficiency which they are pretty sure is addisons. On a plus her consultant feels it would be pretty unlikely for Thomas to have the same but he wants to know what his results do show.

    We have talked to his consultant a lot but as he doesn't know what's going on with Thomas its difficult for me to feel reassured. I only have 4 weeks til his next appointment so just need to be patient they should hopefully have some more of his results back by then. Hate the waiting part. They don't think his asthma is allergy related but hopefully the RAST blood test will prove this so they can move onto looking at other things.

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