Hi, I'm Aimee's mum, she was diagnosed in may as being intrinsic brittle asthmatic.
Aimee currently takes 2 x puffs of Seretide 125 twice daily, 5mg Montelukast, 5ml twice daily of Ceterizine antihistamines.
I have no experience of asthma, my ex husbands family have asthma, but as ex husbands go mine is probably worse than useless, so no advice or support. Aimee has been taken to hospital twice by ambulance and a separate visit of paramedics within the last 3 months.
I finally have Aimee's follow up appt with her consultant on Mon 1st September, what should I expect? Can I be fairly vocal with him? Aimee isn't at all well managed, and has a 'small' asthma attack at least once a week that we manage to get under control at home. She also seems to be experiencing side affects from the drugs, signs of aggression, sleep walking when she does sleep or insomnia, continuous sore throat and throat infections. I'm considering asking for a referral to the Royal Brompton, does anyone have any experience with them? Is she likely to get better support from a specific Brittle clinic?
I'm sorry that's lots of questions, and I've probably left lots of info out!!
Is Aimee using a spacer device with her seretide (if not this can be prescribed from GP) and thoroughly rinceing her mouth out after taking the seretide! Those are the best ways to prevent sore throats - although I know for some people it's not enough!
Aggression and sleep disturbances are commonly side effects of montelukast in children. I believe there is an alternative that works in a very similar way to montelukast that has different side effects for some people.
What treatment does she usually receive from paramedics and then A&E?? How many courses of prednisilone has she had in the last 3months? How often does she use her salbutamol inhaler each day?
Do you know what usually triggers Aimee's asthma?
It would be helpful to discuss identifying triggers with her consultant. Allergy testing (ige, skin prick tests etc) can be useful, in some children GERD triggers a lot of their asthma symptoms (and would also potentially cause a sore throat) and so there might be value in doing a ph study or sometimes they simply trial a PPI. He may want to do some kind of lung function tests, although I am not sure if these can be done on a child as young as six as it might be a bit complicated! He may also want to do things like 'exhaled nitric oxide' which measures inflammation in the airways. There may be value in doing a chest CT scan, as well. In many cases, the initial appointment doesn't make many actual medication changes, or changes to management, however the consultant will want to build up a clear picture of Aimee's asthma before he starts treating, and it's important to have a 'before' snapshot, to measure improvement afterwards.
You would probably want to ask him to give you an ""asthma action plan"" if you have t already got one. It might be worth having a short course of prednisilone at home to start when she becomes symptomatic (although he may prefer that she is always seen). And for your own peace of mind it might be helpful to ask him what his ideas are for future management, however personally my consultant was unwilling to say until he had done all his tests. Another useful thing at many asthma clinics is the resp nurse. I can contact mine anytime and she can give me advice about what to do in different situations - she's very informed and helpful, so if your clinic has an attached nurse that mig be helpful for you to manage Aimee's care at home!
I would expect them to be reluctant to refer her to a tertiary centre (is the brompton the closest one to you?) until they've ""had a go"" at managing her. In some children it is a case of a few simple changes and suddenly symptoms greatly improve, and only if the more standard treatments fail would a tertiary centre referral be appropriate!
I hope so,e of that is helpful, feel free to ask questions!! Must be very difficult not having asthm yourself to try to look after someone with brittle asthma!!
Wow, thank you Soph!
I'll reply in order of your message....Aimee dose use a spacer, and we do rinse her mouth afterwards, usually we brush her teeth a few minutes after or she'll have a drink.
Do you know the name of the alternative to Montelukast? I'll ask on Monday if she can be switched over.
The paramedics give Aimee 3 Atrovent nebulizers back to back,then A&E have given a fourth, she doesn't respond completely to Salbutomal, the Atrovent works but again seems to take a long time to kick in. We have been sent home whilst she's still coughing and gasping for breath but her stats have risen to an acceptable level. The cough can take upto 8 hours to calm. In the last 3 episodes she has only had pred once but a six day course and it took 7 days for her to stabilise, with her being seen every other day by the gp. She was on ventolin every 4 hours, 4 puffs then reducing to 8 hourly 4 puffs. I had a phone consultation with the hospital consultant after 4 weeks as her stats were consistently dropping daily, he took the ventolin out and increased her seretide to the dosage that she's now on.
Aimee has had ige blood tests and skin prick tests, apart from penicillin she's not allergic to anything and has been confirmed as intrinsic trigger, emotional triggers basically. As for GERD I had no idea what this was so Google it, Aimee sleeps sitting up, she has 3 pillows to prop her up, and none of the symptoms 'fit'. She's not had any of the other tests, but they all sound like a sensible route to be looking at. This is our 2nd follow up, I'm going to sound neurotic, but I feel we're slipping thru the system, we're going thru this blind and unsupported, our GP can't help as her dosages are so high and we're told everything has to go thru the consultant, we can call the hospital and ask for the consultant to be paged, and he'll call us, but if she's in enough trouble that I need to speak to the consultant she needs the paramedics. I've had to fight to get her follow up, it should have been after 8 weeks, we're at 15 weeks. My concern is that I can manage the attacks at home to an extent, but am I doing the right thing, should she been seen each time even tho I've managed it? Aimee is fairly wobbly after each episode at home, and has missed an inordinate amount of school. I'm concerned I'm doing it wrong!!
We don't have an action plan, nor a respiratory nurse. I think Brompton is our nearest, we're east Herts, I think there's one at Addenbrookes?? I don't know if there is one at Chelmsford, we're pretty much bang in the middle of all 3. What could they do as a specialist centre that our local hospital can't?
It's hard seeing Aimee struggling each day, she just wants to be running around like a mad thing with her little brother.
Thank you so much for replying.
Kelly
Sorry to hear that Aimee is feeling unwell. There is a respiratory clinic at addenbrookes, which is where I go. They are generally very nice and kind there (I am 14 so still go to the children's clinic) however if Aimee is struggling that much maybe Brompton would be better as they are a specialist centre?? They would be able to prescribe higher dosages and monitor her closely while on these I think.
We hadn't had much luck getting a referral to RBH yet. Instead we were referred to St George's for a second opinion, they have been pretty good so far.
My son is 4 and currently on seretide 125, nedocromil, flixonase, ceterizine and ventolin. Summer is generally better for us, he has had 4 admissions this year and are currently trying to avoid one now. It is difficult with children but I think sometimes it takes time to get the right combination of meds.
Thomas has had a lot of tests and nothing has shown up. I think we are just at the stage where we have to accept hospital admissions are going to be part of things for now and I'm just pleased we haven't had any High Dependancy admissions recently.
I have to admit we had to stop montelukast due to behavioural problems. I know some people have had issues with consultants refusing to believe it causes it but luckily ours was really good and agreed Thomas should be taken off it. Tbh I wasn't sure it was actually making any difference for him.
Do you have an asthma or respiratory nurse you can contact? We have found ours to be really helpful. Do you see a general Consultant Paediatrician? At our local hospital we see a Consultant Paed with special interest in respiratory illness and allergy in a specific Respitory Clinic in which you see the respiratory nurse before you see the consultant. May be worth asking if this is available at your hospital. At St George's we see a Consultant Respiratory Paediatrician.
Thank you for the replies.
Aimee had an attack this morning, which I couldn't manage enough at home. I called the paramedics out, but she was very dismissive. Said it's only asthma and as she's sat up I should have taken her by car. She did all of Aimee's obs which after being very low at 88% with ventolin they came up to 94% when the paramedic arrived. I was advised to take Aimee to hospital by car to get her checked. After 3 hours we were seen by the paediatricians and Aimee is back on ventolin 4 x puffs every 4 hours for next 24 hours. Her stats may well have risen but she's definitely not 'right', she's a very waxy pale colour and has barely said anything all day, which is rare for my chatterbox. I'm just grateful that she has her consultant appt on Monday.
Jenny I'm sorry your son is suffering too. I agree that it's a case of getting the medications and dosages right. I'm interested that you stopped the Montelukast, did stopping cause problems?
Bubbles, thank you for the advice, Addenbrookes would actually be easier for us to get to. I'll speak with the consultant on Monday.
Nope stopping hasn't made any difference apart from improvements in behaviour back to how he was before. He was having regular admissions on it and still is having just as many off it. As you have consultant Monday I would def discuss the options with them
I'll definitely discuss it with Aimee's consultant. Thank you for the info.
Kelly x
Can I add to this?
As a recently retired (I am fairly young really!) nurse specialist in this field & I still work but now part time on other children's wards, I think I know a bit.
I agree with much of what has already been said.
I would say that in the team I worked in I have never heard any of our patient labelled as brittle it is uncommon in children & I have my doubt about it in adults as there are many many asthmatics who are not controlled for one reason or another. We had some very very serious asthmatics who where on shed loads of drug in inhalers & via pumps & as injections so I think we would have had them labelled as brittle if they were.
Insists on seeing a specialist as if Seritide is needed at this age they should at least have her reviewd by one. Professional must take this illness seriously. Last year I did a small survey with Asthma UK & local respiratory group with children at school & many of them said exactly that. No one realised how serious it can be if not.
That paramedic should not have said "" its only asthma"" & sats in a child below 92% needs to be taken seriously & acted upon. Most paramedics I have taught or spoken to have said they would far rather the child be not so bad when they arrive as they know it is better to get seen sooner rather than later.
I agree you need a plan (see my other post to new asthmatic mother where I outlined an AMP) in which case I would say if she was in the red zone never take by car alway call 999. They have oxygen & drugs plus if she got worse you would not be able to drive & help her.
Also don't let them send you home after a nebuliser as this could make you better at the time but the late phase of asthma can be up to 8 hour later ( usually in the night as well) if they are bad enough to get a neb they are bad enough to stay even if it is only 8 or so hours.
A large spacer is as good as a neb for getting the blue med in but if they need oxygen or they are struggling to hold the spacer or distressed then a neb will be needed.
I know that our team would rather see a child a couple of time to fine tune the GPs work rather than get the child via intensive care or years down the line when they have had years of poor health.
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