Ok long story short - my daughter has been suffering with asthma a symptom since birth as well as allergic to dairy and soya which she grew out of. Treated and diagnosed by our local consultant but as she's got older she's having more attacks, hospital admissions and needing more meds.
We were referred to the brompton earlier this year for her asthma as it was deemed difficult to manage and they suggested doing a full work up and going back to basics - which I was pleased about as she's missing so much time off school and quality of life.
Got the results a few of weeks ago and they found nothing other than acid reflux which she'd already been treated for they've just added another med to go along with it.
They found no lung disease or signs of severe asthma so are hoping the reflux meds will help. My only concern is the meds didn't help before and whilst I know this can cause an issue with breathing and wheeze - when she's got a sniffle it goes straight to her chest normally causing pneumonia then an hospital admission days of pred. When the weather changes this causes her to wheeze and become unwell needing more pred, exercise etc. Can all of these things be the cause from gerds? One itu admission , 3 lots of aminophylline and 2 lots of iv salbutamol which I'm sure any parent would agree is horrible seeing your child on those drugs.
Since getting the results she's been taking the new meds but has had a wheezy episode requiring time off school due to a viral infection of the throat and continued to have what I'd call a dry asthma cough. Now my gp said not to get too excited thinking the gerds would be a miracle cure as they felt the level of prednisolone she takes would potentially cause the tummy issues - this year to date she's had 55 days worth
When I went to get the results of the broncoscopy etc they said they'd forgotten to do ige testing and rasts so did them that day - now I've received my copy of the letter from our appointment and it says all the stuff they told me apart from in biro at the bottom it says
Ige 82
Cortisol 33 (165-660)
I thought due to her having hayfever and food intolerances as a child she might be allergic to something or have immune issues as she always gets chest infections when having an asthma episode as it were
But I have no idea what they mean. Any thoughts or advice would be great because I'm feeling really low at the moment after hoping to get something concrete and now feeling like it was something trivial all along
to me (an untrained person who is looking only at those numbers in comparison to mine - id check with GP as they will understand) it sounds like high ige (meaning shes an allergic type person - within a certain range og ige's they can treat with Xolair - no idea what those ranges are but worth discussing) and possibly meaning that treating with higher doses on antihistamines or montelukast (is she'd not already on one or both).
The cortisol sounds a little low to me. My understanding was that morning cortisol should be above 50! How often is she on pred? does she take a high dose of seretide (of fluticasone - the steroid in seretide)? If she's adrenally supressed then she should be under an endocrinologist and might need replacement steroid therapy. I don't know if GERD can cause as severe symptoms as that, however i know that as steroids control the bodies inflammatory response, inflammation can be a bit dodgey in people with adrenal insufficiency! (I know Curiouser on here found her asthma greatly improved once on steroid replacement therapy) and also as if she is having adrenal crisis off steroids then that will make her acutely unwell so you could be dealing with a child having a mild asthma attack but who is very very ill because there is also a crisis going on. I don't know that is the case, but worth discussing with the GP as adrenal insufficiency is reasonably easy to treat and test for, so if it is an issue then it would be useful to check what is asthma, what is GERD and what is adrenal insufficiency.7
I also find it confusing that they are saying the asthma looks controlled. as far as i understand there ae no clear tests for asthma (well - i think there are positive results, but no negatives) as on any given day an asthmatic can have lower inflammation as they are not struggling at that particular time, and it can still be asthma! High inflammation and air trapping and things are clear indicators of issues going on that many difficult asthmatics will show, however not everyone does!
Hope this is clear and in some way helpful - always hard to know how much you know so i hope this isnt either patronising or too complicated - if it doesnt make sense just let me know and i'll clarify! I hope they can find a solution to help your little girl get better! it sounds like you've both had a bit of a rough time!!
Thank you so much for replying - it just doesn't make any sence to me.
She currently takes seritide 250mg morning and evening, omeprozole 10mg daily, montelukast 5mg daily, domperidone 7.5ml three time a day, cetirizine 2.5ml twice daily and obviously salbutamol inhaler or nebs when needed and atrovent.
With regards to the prednisolone she takes on average about 2-3 courses a month varying between 3 and 5 day courses and 20-40mg depending on the severity of the attack. She's always been very steroid respondent as in with a day of being on them she's great but then a couple of days after finishing a course she's back to where she was before them.
To be honest when they said she had gerds the consultant at the brompton said someone should have called me to say she needed new meds but no one did - and if you say the ige and cortisol aren't as they should be then I'm shocked at having a little footnote at the bottom of the page and then wait for us to come to clinic again in August.
And no you've not patronised me at all - I personally feel like the 'powers that be' are by implying there isn't anything wrong - I haven't seen my local consultant since receiving the results but am due to see him in 2 weeks, so am keen to know his thoughts as he put her on omeprozole years ago.
Like the things they were saying just didn't apply to my daughter - she'd be worse at night due to the acid coming up the airways - when she's bad she's coughing and wheezing is all day and night but potenutually can become worse at night but then as an asthma sufferer you'd also expect it to be worse as your sats naturally drop whilst sleeping - just all seems very contradictory
When I asked if I should stop giving her salbutamol before playtime, exercise, bedtime etc they said no keep on with that if those things make her wheezy. Well if its the gerds how would that somehow kick off because she's running around like any other 5 yo!! Argh lol
To be fair all they did was lower the seritide by 1 puff morning and night which is what we normally do during the summer anyway and then up it in the winter again but they have said if she's not had any episodes in the next 6 weeks they will lowers it again - trouble is during July an Aug it's rare she does have any episodes as its her ' good part of the year'
I will contact my gp and see if they can share some light on the results of the blood tests
Thanks again for replying
I wouldnt necessarily compare paediatric results with an adults results.
I have severe reflux - and I was getting recurrent pneumonia. It turned out that laying flat in bed meant I was refluxing and aspirating (contents of stomach ending up in lungs) which was playing havoc with my lungs. Difficulty breathing and wheeziness is also a symptom of aspiration. My suggestion would to be trialling raising the head end of the bed (i.e. putting two housebricks under each bed post at the top) to see if this helps. Due to my anatomy, the only way I can avoid aspirating refluxed stuff was to get an electric bed, as this stops me sliding down a raised bed. I need to sleep at a much higher angle (45 degrees or more) to avoid aspirating refluxed stomach contents.
Sleeping more upright has made a significant difference both to symptoms, and infection rates so could be worth a go
Lynda
• in reply to
I wouldnt necessarily compare paediatric results with an adults results.
Lynda
Good point! Hadn't even thought of that! lol!
I suspect it is the same as its done per volume of blood and i can only imagine kids needing more cortisol not less, but yeah, as i said check with GP as it also depends on the time of day the sample was taken and whether she'd *just* come off a course of pred or anything weird like that! It would make sense with such high doses and consistently rapid response to stopping and starting the pred that her body isnt doing its own thing, not sure but could believe kids might be slightly more prone to adrenal supression as i guess their adrenals have less time to get out into the habit of making cortisol?? maybe! lol! i don't know - im just making stuff up now! hehehe! but like i say, its not a hard test, morning cortisol which is the thing they use to decide if short synacthin test is done (usually - my cons couldnt believe i might not be so we went straight for short synacthin) and that is a really early morning blood test (well - 9am is probs fine! but to me thats early) and they look to see if levels are below 50 (if i remember correctly and if numbers are the same for kids) and short synacthin is done at the hospital, its a blood test, and injection of synacthin into bum, a half hour wait and then another blood test, if they are worried they'll ring within about 24hrs.
Do think they're being a bit confusing telling you both that there are no significant asthma elements, and also that you should pre-treat for any activities! sigh! hopefully GP will have some answers, or mine has even written to my cons asking some Qs that were unclear - i find it hard to remember Qs at the time which is frustrating tbh! but yeah, GP helped a lot to work out what was going on and i know my GP better so can talk more easiely to them!
Lynda knows much more than me about refulx!! I was wondering though, am i correct in thinking that in terms of reflux you were completely asymptomatic for reflux (as opposed to the obviously significant effect that refluxing had on lungs) so thinkgs like bad taste, burning throat? It just seems so strange that they dont test for it more when it can have so few symptoms! I have discussed this before, i do get reflux-type-symptoms, although not major ones, but the thingy (tecnhical term lol) which closes the top of your stomach, mine didnt work when i was born, so could believe i was more 'at risk' but cons is uninterested in investigating that further. I much prefer to trust the cons, but you do have to wonder sometimes!
Lynda,
Thank you for your reply
I have these little feet under her toddler bed which raise the top end about 4 inches do you think that's enough to have an effect?
I had no idea reflux could be so bad - did you suffer with any other symptoms ie stomachs aches or anything? I just feel bad that it could possibly have been this all along as my little one has been suffering in silence. As I said earlier she was treated with reflux meds anyway due to the connection between asthma and gerds but didn't realise it could be so severe
Thanks again
• in reply to
Hiya, I dont know if 4"" would give enough of a raise but its worth a try. You essentially need her head to be higher than her stomach so that stuff can't travel uphill from her tummy to her throat.
In my case, I had NO other symptoms of reflux apart from the respiratory difficulties. It was only when I went to Papworth (specialist heart and lung hospital) that it was picked up - and I didn't believe them at all. But they were spot on. They said that a huge %age of people they treat have silent reflux like me, which when treated posturally and medically improves respiratory symptoms.
I hope it helps. If not try the house bricks or books/yellow pages at the head end!
Lynda
Hi, just reading you post and making an understanding of this, when your daughter has had these bad cough episodes has she ever been made to do a sputum test by the doctor (basically a spit test) where if she is bringing flem up from the chest the sputum (spit) is collected then sent of the a hospital laboratory and bacteria growths are conducted and then resilience test are carried out to see which anti-biotics can fight the infection
Only just seen this thread and apologies if late response but....
My daughter was 2 and a half when diagnosed with Adrenal Insufficiency. Her first cortisol level was 16. They said they were expecting it to be 600-700. It was classed as severe. Her next test was 21 and the third was zero!!
She had been on nebulised steroids at the time in addition to maintenance pred for a couple of months by then. Her adrenal glands were shrivelled and not identifiable on scan.
I'd definately query the cortisol results as if left that can be dangerous if she is poorly etc.
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