Brittle signs

[yaf_user681_15459]

Hi,

Due to my daughter recently struggling with her asthma, we ended up having a long frank discussion with my gp. Maddies colour has been going and her sats dipping but no obvious respiratory symptoms. I showed my gp a picture of maddie when this happens and she pointed out to me the recession in maddies neck. We've noticed it during an attack before but I hadn't really looked for it at other times. I was unaware but she explained that brittle asthmatics don't always show outwardly respiratory symptoms but it can all be going on under the surface.

Does this happen to any of you??

Since then however , her symptoms are now clearly obvious to us and she's struggling. We had been reducing her maintenance pred but it seems she just can't manage it She's only just turned 5.

Apart from maintenance pred, does anyone know of any meds she could try?

I hate the pred and she's been on a maintenance dose for over 2yrs now. .

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Ah no Emily, so sorry your little girl is having such a rough time!!

I have a brittle diagnosis also, so I'll try and help!! But adults and kids might be different!

My days range from good to dreadful. When I am going downhill, it tends to be over a few days. Outwardly I look fine (I've learned to be able to look ""ok""). But when struggling my heart rate and resp rate goes up. It's not always in direct correlation to salbutamol either, for me it's a marker of how much I'm struggling. When I'm getting to an acute stage of an attack, I find taking deep breaths very difficult, so it looks as though only the top part of my chest is moving. My finger nails start to go a blue/grey colour, even if I have good oxygen sats. I start with a wheezy cough which then turns to really short of breath and then get to the point where I can't talk well/at all.

This doesn't happen all at once, not all my attacks are the same, it's just some of the things I notice that I am very good at hiding from others.

Hope this is in some way helpful and that things improve for your little girl!! xxx

[yaf_user681_15459]

Laurs - thanks so much for your reply. I really wanted to know what it feels like to be brittle. I have moderate asthma myself but its nowhere near what my daughter contends with daily. She was diagnosed as a baby so she hasn't known any different. I think that's why she is so good at 'getting on with it'. She is also a bit young at articulating exactly how she feels.

Thanks so much x

[yaf_user681_15459]

Does anyone know of any meds that could be possibly tried instead of maintenance pred?? She has adrenal insufficiency due to the pred so I would love a different line of treatment.

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Hi Emily

I also have a brittle asthmatic diagnosis have had it since I was 19 and I am now 36, for me I have become unaware of the day to day symptoms and probably don't notice things when they start to go off a little as I am used to it...does this make sense...when I was in hospital recently one nurse described my symptoms as going into free fall, which she described as I go along day to day and then all of a sudden my symptoms take a nose dive and I don't have a parachute to stop them a good analogy I felt. I was also told that I can feel fine when others would be asking for help as I have got used to it, but for me some of my early warning signs of things going down hill are yawning repeatedly, it has been described to me as air hunger, I can't seem to get enough air in because old air is stuck in the inflamed tubes, so I yawn loads. I also become less able to concentrate and my temper becomes more fragile. I am a primary school teacher and I noticed in one of the asthmatics in my current class he becomes easily distracted, he also gets ""panda eyes"" dark circles before he has an acute attack, He is quite a severe asthmatic. He also become more fractious and less tolerant, his mum puts this down to lower quality sleep. I am not sure if any of this helps. I am able to ride most attacks out now with home nebs and increased medications, but I still end up needing help in hospital if my symptoms catch me unaware or particularly ferocious, the last 8 weeks have been a case in point, I too struggle with pred reduction have been on the blasted tablets since I was 15.

I am not sure if any of this is useful, I was trying to put myself in the shoes of a five year old, and have found it really hard to explain. Sometimes I can now just feel things aren't right...

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There are other meds but I am not sure if any of them would be suitable for such a young child...perhaps a word with your GP or specialist I am sure you have thought of that, sometimes it does feel that you become stuck in the asthma mud

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I stretch a lot, and sit/stand with my ribs kind of pushed forwards, it makes it feel more like ive got more room to fit all the air in my lungs. I also get irritable and do a lot of nothing, keep flicking from task to task, but not really stopping to do owt, can't really sit still, but keep going to sit for a bit and then getting uncomfortable. I fidget when im sat still and will rock my ribs (one of my consultants wont discharge me if im sat on the bed and moving!) i clench and unclench my jaw (but this might be hard to spot in another person) and will mouth breathe, and refuse to nose breathe (i normally mouth breathe but cant nose breathe if im struggling). erm......throat clearing is a common one, but not that i notice! I tend to be quite quiet, and often want to be by myself (someone said an interesting ecolutionary basis for this, where we dont want to be around other people as they may present a threat and when we're ill its harder to defend ourselves - no idea if its true - but its interesting). . No idea if it is the case, but i could imagine a child becoming more compliant about taking inhalers when struggling as its associated with more relief. I know a sign to look for is intercostal recession and tracheal tug in kids, i think this is more associated with a more pressing attack, but im not sure. I think some kids complain of stomach ache. Obviously things will be different for everyone, but those are the outward things i sometimes do!

in terms of meds, the only ones i think are usually used in kids are inhaled/oral steroids, LABAs, montelukast, antihistamines and possibly ipatropium. im pretty sure uniphyllin is for much older kids/adults, and then i guess there are things to treat specific triggers (ompeprazole/domperidone for reflux issues, nasal sprays for post nasal drip stuff, xolair maybe for allergies - no idea abouit age of xolair), but its really hard in kids, i suspect that its hard to keep meds to a minimum whilst looking after symptoms, i would have thought that pred is going to be your best option, its a shame as there are such nasty side effects, but the docs will be considering everything thats needed!!

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I am also a real fidget and restless like soph says...hadn't really thought of that

[yaf_user681_15459]

Thanks guys so so much.

It's so wierd how you have both explained symptoms you feel.

Maddie stands with her chest puffed out. When I look at photos of her with other children her own age, her chest seems puffed and her chin almost sits on her chest. She also has black/purple circles under her eyes. Her skin colour goes grey/blue.

She's quite an active person but stops regularly and sits and regains composure. I've been told she's catching her breath. If I hadn't been told that I wouldn't have realised this is happening. She is so good at getting on with it!!

She also gets grumpy and fractious too. My husband says all she does is cry!! :-(( She daily says she has tummy ache too. We've recently tried giving her ventolin when this happens and it always works so it seems its her chest, not her tummy after all.

As for tracheal tug, this is what the gp pointed out.

All the above symptoms are before her respiratory signs become apparent!! (Resp rate, wheeze, cough, mucus, breathless)

Asthma is horrid!!!!

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Hi all,

Reading all your comments about symptoms (or signs really) apart from the main asthma ones like SOB/wheeze have been really interesting! I was a healthy non-asthmatic until late 2009 when it all kicked off and now I'm brittle. As you can imagine, everyday seems like a learning experience and looking through all the comments above makes me realise how many of the signs I have that I didn't even realise I was displaying! Someone at work once told me he knew when I was struggling because even though I was still continuing with my work, my throat was moving when I breathed. When SOB and a little panicky, I tend to rock (more side to side than back and forwards but I do both). I also get really quiet and don't speak unless I really have to but without drawing attention. In my mind, the more attention it gets, the more panicky I become.

Honey - thank you so much!!! I have asked the GP and asthma nurse about this before but I seem to yawn constantly some days and tried to relate this to the asthma, but they said it was probably nothing. Despite this, I remained convinced that I was yawning more than other people!!

Apologies if this seems to take over the post, it's just a relief to see others displaying signs similar to mine!

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Hi Emily,

So sorry to hear that your little one still isn't doing to well!!

Just briefly, with being a strange brittle myself, my signs can vary from, going very pale to very red, breathing more than usual, having a wheezey cough, not being able to mobilise as much as what I usually could, talking is very limited let alone laughing, I can also become very sleepy. This isn't all during and attack, this can also just been on days that I am struggling. There is also the usually that I have like using extra muscles to breath, nasal flare, Tracheal tug, etc etc.

I guess your little one could present with any of these, but I have also seen it with children where they go in the complete opposite direction in that they could be having an asthma attack but be screaming at the top of their voice. So each case I guess can be completely different. Just wondering, can your little one do peak flows as this will obviously be a good indicator for whether or not she is dipping a little!? If not, have you ever though about turning something into a little game like on a good day, try and see how far she can blow a ping pang ball a cross the table in one big sharp breathe, Mark this point and then, on days that you think she may be dipping you could get her to do it again and ultimately if she can't blow it as far you can instantly know that there is restriction. Ok yes this isn't the best way to accurately read her lung capacity at home, but surly it's better than nothing and its also something fun for her to do with being such a young age.

Medication wise, I'm not really sure if there is a medication that she could use at such a young age, the medication that I have been offered as a steroid sparing drug, it has been decided that it is safer for me not to have as I will get a lot more infections and they will also come with nasty side effects, so currently I don't think there is a whole lot of choice in that sense. Does she have allergic asthma, could you try a different antihistamine like fexafenadine, hydroxyzine, citirizen or Loratadine. Has she also tried montelukast!? What about a steroid inhaler like symbicort or seretide if you having tried these already as the steroids in these are more localised to the lungs so the steroids themselves don't actually effect the body like pred does. Is her asthma effected by reflux at all, could she try a anti reflux tablet or if her asthma is effected when she lies completely flat, could you raise the top end of the mattress so it us a little elevate or could you give her some Davidson pre bed to keep the tummy acid neutral. If you could try any of these alternatives, it could mean that her asthma could become a little more controlled and in the long run her pred could become reduced to a lower dose, obviously with here having adrenal insufficiency she wouldn't be able to come off it altogether without transferring over to hydrocortisone.

Ok so I think I have totally rambled massively now and I hugely apologise about that. Though I hope it helps.

Xx

[yaf_user681_15459]

Aw thanks so much guys,

Charlie, thanks so much. Maddie has had a 24hr test for reflux and came back negative. Also she has no allergies. She is merely triggered by environmental factors such as cold wet windy weather!!

I may try the blowing technique to see how she's doing. Whenever she does spirometry she does really well and seems to have good lung function....this confuses me?? Yet she couldn't blow her birthday candles out last week! Does anyone else have good spirometry results yet still suffer daily??

The meds she is on include: pred, flixotide, Atrovent, montelukast, serevent, Ventolin, azithromycin, and then she has saline nebs and physio. The azithromycin is 3x a week.

It's a real difficult task. I'm so grateful for all your replies though as it gives me an insight into the symptoms you guys have. Thank you so much.

I hope you all keep well,

Take care,

Emily x

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Just a quick add-on to Charlie's suggestion of the ping-pong ball - my cons always gets me to imagine I'm blowing a malteser across the table. Maybe a malteser (being smaller) would be better for a little mouth, and she could always get a second one to eat as a reward?

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Sorry to hear of Maddie's struggles (still!).

Spirometry in the lab is often normal for asthmatics - the episodic nature of asthma means that one can be fine for now and then not so fine when triggered.

Also it depends what numbers they are looking at: sometimes the problems show up in numbers other than FEV1 % predicted - for example in resistance (sRaw, sGaw, Raw, Gaw) or in lung volumes.