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Hi

I’m so glad for you and him! I hope the xolair keeps him stable, and that he can stay off the steroids!

Sorry to hear he may have something else going on - hope you find something that helps the IBS too x

Shellc

Try a good probiotic as it maybe from antibiotics in the past,

mintypol

I buy Buscopan tablets, sorts my IBS brilliantly.

Asthmagenie

Hi all thanks for your replies. For IBS he takes Colofac (meberevine) when the pain is bad. Sometimes it works within half an hour and sometimes it doesn’t much at all. Sometimes rest for a few hours works. We’ve had 2-3 years of looking for triggers...diaries etc and giving a few foods up without anything clear coming out, so have been resisting doing anymore of that.I guess I find the pattern strange, sometimes he wakes up with it and no idea why-general tiredness???? Other times he can have a break from it for a week. A strong trigger is strenuous exercise but he won’t give up he’s football especially now he is breathing well! All I know is it’s not school related as can happen in holidays. Not impressed with paediatric gastroenterologists who automatically try to link it to emotions. Seem a get out clause to me. IBS seems a bit of a catch all too. He didn’t have any investigations except for coeliac and a poke of his tummy. Looking back he has probably had symptoms since a baby but was busy dealing with all the allergy asthma related stuff then!

digdig123

IBS is definitely a catch all & all too often stress is sited.

Have you heard of the FODMAP diet? If you ever decide to go down that path again I can recommend it.

Asthmagenie

Dear Dig Dig, sorry to hear of your problems with hearing and asthma flare ups. This is a long message but hope it helps a bit.

I don’t think Symbicort contributed for my son because of the timing...the damage was done before then and also he has been on daily Symbicort since October and adrenal function has recovered. Probably the things that caused it were the 2 triamcinolone injections, numerous courses of prednisolone and the very high unlicensed dose of fluticasone in Seretide 250 inhaler....probably in that order. An adrenal consultant said it wasn’t surprising!! I did try and read about the systemic absorption of inhaled steroids. It was very complicated about size of particles and binding but it did seem fluticasone has potential for systemic effects more than first thought -high dose especially an issue. It seemed to say steroid in Symbicort was better at staying in the lungs. Oral steroid is a much much stronger hit so you are right to stick with the Symbicort and avoid prednisolone.

My son didn’t have any hearing issues I was aware of....except the usual not listening and poor volume control! I checked through the data sheet (smpc) and couldn’t find anything obvious.

medicines.org.uk/emc/produc...

I was told that adrenal insufficiency is hard to diagnose due to the symptoms overlapping with other conditions. I disagree because if you are prescribing high dose frequent courses of steroids and know it happens you should look!!! Had an argument with Consultant about why they don’t measure cortisol as routine check for these patients and that didn’t go down well. Probably money related and a feeling that the steroids are needed so what can they do but give them when breathing is bad. The trouble was the courses of prednisolone weren’t working in the end. As for who raised the adrenal issue in first place ...me, after GP supernurse reiterated it wasn’t good that he had been on so many courses of prednisolone...GP had given something like three 5 day courses in a month! When I raised it with Consultant it was a kind of throw away, we should probably check but can’t do it until he has been off oral steroids and then off the injections...so raised it in June and measured in November. I had been telling them about symptoms and we were seeing gastroenterologists and food allergy but none of them recognised adrenal insufficiency as cause. I’d say of the list of symptoms below the weight loss, nausea and vomiting and tiredness were the ones that came on at his worst times, also dizziness. He was very pale...slightly green at times. He still has the headache and abdominal pain but guess that’s overlap with IBS???. Getting up in the morning was hard as that’s when you really need the cortisol. He did collapse once after cannula injection went wrong, he also said he felt confused a couple of times. Another time I got him checked for possible concussion but it may have been symptoms. Adrenal function was about 40%. Really I think we were lucky he wasn’t worse-we never had to give hydrocortisone injection. The crises that people with Addison’s have to deal with are very difficult.Looking back his weight bounced back quite quickly after month or two. He went on hydrocortisone tablets 3x a day but actually I think starting Xolair was key to recovery as it took the stress off his body allowing recovery. It sounds like Symbicort could do the same for you. Obviously the hydrocortisone was there to replace the steroid he was missing but at the same time you can’t give too much as need to kick the adrenals into making their own. Hydrocortisone isn’t treatment really but replacement. It’s also very difficult to replace the natural rhythm of when the body makes cortisol.

‘Symptoms and signs which might be seen in acute adrenal crisis may be somewhat vague but may include anorexia, abdominal pain, weight loss, tiredness, headache, nausea, vomiting, decreased level of consciousness, seizures, hypotension and hypoglycaemia.’

Sorry this is very very long but it’s kind of therapy to write it down! I think it’s a case of keeping your asthma under control and if there is any adrenal suppression it will recover. If tiredness is more of afternoon thing than morning then that to me is sign it could be another reason. My son had a lot of steroids so hopefully his case is unusual. Try your GP for Hearing issue..all the best of luck

Mogget in reply to Asthmagenie

Hi, very interesting read and I'm glad your son is doing much better on Xolair! I'm in the process of being considered for it. How did you get your son's adrenals tested? Through the NHS or private company?

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Asthmagenie in reply to Mogget

NHS organised Synacthen test. You have to turn up at ‘opening time’ as cortisol is higher in the morning. They put in a cannula then take blood (time =0) and that gives you baseline, then inject the Synacthen that simulates a kind of physical stress on the body so that cortisol production is stimulated, they then take a blood sample at 30 mins and 60mins then they go away and measure cortisol. Results were given a week or so later when appointment was made by them to return to the clinic when it was bad news.anyway..My son didn’t experience any pain or any kind of feeling from it. The actual results are a bit arbitrary in that you are considered to be normal if above a number after the stimulation (450 or 500 dependent on the lab I think) and to have adrenal insufficiency if below. I skimmed through articles arguing these numbers shouldn’t be considered in an absolute way and people can respond differently on different days, or have a normal reading but not respond to the cortisol effectively- in other words it’s complex. There are other ways of measuring cortisol in saliva I think but some medics consider them reliable. I don’t know about the value of measuring cortisol occurring naturally, but seems sensible to measure it to me. Respiratory consultant was against anything except Synacthen test. Do you think you have symptoms ? Treatment of adrenal insufficiency is pretty rubbish and old fashioned in my opinion. It makes asthma measurement and treatment look really high tech. Hydrocortisone is a weaker steroid (about 5x less than prednisolone) but its got side-effects. When do you find out about getting Xolair? The weird thing to me about my son’s application was he needed a reading of IgE in the correct ballpark only once, (one of the horrible steroid injections brought it down) it didn’t seem to matter that it rebounded to its normal too high level before he started treatment!! Wishing you best of luck.

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Asthmagenie in reply to Asthmagenie

I meant saliva test considered unreliable by some Drs.

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Mogget in reply to Asthmagenie

That's interesting - thanks for the information. I experience nausea, dizziness, tiredness and struggle to put on weight... some or all of these may be connected to my thyroid problems however. I haven't had many courses of oral steroids throughout my life but have had 3 in the past 5 months as my asthma worsened in May. I may ask my GP about the Synacthen test.

I say I'm in the process... my consultant is referring me to a more specialist unit and he said one of the options they could consider is Xolair. So we'll see! I'm sure it'll be a good few months before I even get my first appointment...

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Asthmagenie

Thanks Dig Dig, our messages overlapped. I had heard of FODMAP from same great practice nurse who got me thinking about the steroids but then wasn’t the time to try. I had a look will mention it to Consultant when see her next week (general paediatric at same hospital, don’t ask). Ironically his oral food allergy means he doesn’t eat much fruit-literally just bananas, oranges and dried mango! Also hasn’t had any legumes etc as according to blood test he has allergy to a protein in them which explains peanut allergy.

The thing I may try is removing/adjusting onion and garlic as we have a fair bit of that....good antimicrobial I thought

digdig123

ThankYOU so very much for taking the time to reply to me. I accidentally deleted my first message when trying to edit it 😂

Your poor boy has been through so much. As a parent you become the expert and the advocate. Trying to make sure of the very best result possible.

So much of the asthma related medications have side effects. I Haven’t read of one that doesn’t.

I just looked up the side effects of symbicort again for the one thousandth time. Head ache ( which I suffer from badly) and nausea are listed.

I bet it is hard for you to determine which Sudetenland effect is from what exactly.

Removing the onion and garlic one by one trying to determine which may be a possible culprit is a good idea.

My GP throws he’s arms in the air when I aske about the startling easy and hearing sensitivity. I think it’s time for me to resquest some blood work. Deep down I actually think it’s the side effects from the prednisone withdrawal syndrome, three wks on. A beautifullly helpful yet nasty drug. I wonder if there is an alternative to it?

picboy

I have ibs with o er 30 years on a good day its like a pulled muscle ona bad day its murder got adtult asthma 7years ago .ibs milk kills me eggs mayonaise or too much greens I live with it it stops me from nothing except on abad day the farts are like chemical weapons

Asthmagenie

Thanks picboy, anything help you when in pain? PShave you thought of applying to M15 as your naturally produced organic chemical weapons could be useful!