Feeling like a failure: My 12 year old... - Asthma UK communi...

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Feeling like a failure

aileenc1 profile image

My 12 year old daughter has really severe asthma and because of it she suffers from terrible anxiety. She started high school this year but because the anxiety was triggering her asthma symptoms they gradually reduced her timetable to just the first two periods each day so she is only there for an hour and a half per day. Most evenings she is up most of the night she just seems to spend her whole night doing peak flows checking her sats on her watch and just generally struggling her sats are variable between 86 - 92 most nights then she takes her 10 puffs of salbutamol and it still seems rubbish peak flo is usually 190-210 her best is 320. This goes on most nights between 12-3:30am before She comes into my bed and my husband goes into hers and then once she’s in and assured I’ll keep an eye on her she goes to sleep. It starts again in the morning when she gets up Same sort of sats and peak flo as during the night . The thing is I suspect she isn’t blowing the peakflo correctly deliberately and making it low. Because she carries this on until just after school starting time then seems to calm down sometimes I make her go in late and sometimes I tell her to go back to bed. And once she knows she isn’t going to school she seems to relax and her breathing settles as well. I know advice is generally take her to a and E with the symptoms she has and sometimes we do but if we took her every time we would literally be living there. I just feel totally crap as I have no idea what to do. She doesn’t have a single friend in the world she talks to no one outside my house and I’m feeling really angry about it all and also really terrified that I will miss a severe asthma attack which she has had in the past. I feel like I’m being bullied by a 12 year old. But because of how crap she has it at school I think she is taking her feelings out on me and I just have to let her. But sometimes when I’ve had less than 2 or three hours sleep. I can’t help being a bit grumpy with her and then feel awful about it. I’m just really struggling with it all just now.

16 Replies

This is quite a complex issue and goes beyond asthma treatment, which you don't go into but is the first step in assuring confidence for both you and your daughter. As far as that goes I think you should talk to Asthma UK to assure yourself that your daughter's treatment is up to date. 0300 222 5800 (Mon-Fri, 9am-5pm).

I can understand anyone being anxious once they've experienced an asthma attack, but daily anxiety is going to affect your daughter's asthma and can lead to dysfunctional breathing which causes breathlessness. I get the feeling that you haven't had enough support as a parent of a child with asthma and anxiety.

Ask your GP for a referral to a respiratory physiotherapist so that your daughter, and yourself, can learn a range of breathing exercises. These will tackle any dysfunctional breathing but also introduce a routine that can replace the peak flow routine; I stress replace. Breathing exercises are calming and can be meditative (you can use music and a special space or item other than the peak flow) which is necessary when addressing anxiety. I'm not saying this is the whole answer, but a good first step.

We can adopt behaviours that are unhelpful, but they are an outward sign of someone trying to take control, especially after a trauma, such as an asthma attack. Your daughter feels safe at home, and especially with you, so she has developed a way to get that safe experience as much as possible and to avoid situations that she finds stressful. Now her world has shrunk to a degree where it's going to take a concerted effort to affect change. Your GP and asthma nurse should be your first port of call; just articulating the issue concisely to get them to understand the support that you need as a family to help your daughter open up her world can be a challenge, but writing down bullet points of your concerns and your expectations will help.

You may also want to consider having a chat with Mind, who understand what services are available and pertinent to your situation. Maybe have a chat with them before the GP and asthma nurse? mind.org.uk/information-sup...

Many of us on here have experienced asthma as children and recognise some of the challenges that your daughter and yourself and your husband are facing. I often reflect on the challenge my asthma was on my parents, especially my mother, both in terms of sleep deprivation and emotional pain. As a kid my instinct was to stay home but I was constantly told, "you'll feel better once you go out (to school etc)". I still have to remind myself from time to time of this truth, as rarely has the mantra failed me.

aileenc1 profile image
aileenc1 in reply to Poobah

Thank you that is very helpful you have actually managed to give me a bit more insight into why she feels as she does. She does have a referral in for psychology but who knows how long she will wait. She did see someone from psychology before but to be honest it felt a bit like once she had gone through a few coping techniques she was discharged even although she wasn’t coping much better. She has been put onto relvar Ellipta 184/22 2 weeks ago and I think it may have caused her anxiety to feel worse as well although I’m not certain she certainly seems a bit more emotional. I also know a huge part of it is that she has been on oral steroids for just over 2 years so her weight has more than doubled in that time and she has had some bullying s as bout how she looks. . As well as this she fell at school before the holidays and fractured both wrists this was her last day of primary school so I know that she is terrified of something like this happening again as well especially as there are much larger groups of kids moving from class to class. It just breaks my heart and I wish I could take it for her. We have been trying to do regular meditation at night as well but not sure it’s helping much. Any way I’m sorry for the long posts just sometimes feel like I need to just get it out to hear someone else’s opinion. Thanks again for the reply.Aileen

Poobah profile image
Poobah in reply to aileenc1

Definitely getting everything off your chest in a safe space is necessary for you and we are here to listen, even if we don't always have an answer, there's usually someone who knows what you're going through.

Your daughter has had a rough ride of it, just with her asthma and the treatment, let alone breaking both wrists at school - her anxiety is understandable.

Changing inhalers is a pain and it can take at least 8 weeks to see the benefits. There should be a review at that point to ensure that the treatment is working as expected and to enable tweaks in doseage etc. And if the medication isn't working as expected then it's good to consider another inhaler- sometimes it takes a few tries to get the right inhaler/treatment. Asthma treatment isn't one size fits all.

Waiting times for most services are interminable but what to do in the meantime? There are a range of books that can help parents and/or children and teens to some extent. psychcentral.com/health/boo...

Your daughter has changed schools plus heading for her teens so must be experiencing a range of physical and emotional changes. It would be difficult enough without her health challenges, but it's not impossible and she has yet to find her feet. Confidence is learned, very few are born with it and life's challenges can make us stronger bit by bit. I'm wondering if your daughter had a mentor, maybe through a hobby or sport, she would start to see herself as someone who can rather than someone who can't. Despite my childhood asthma, which was brittle and unpredictable, I was allowed to take up riding at 7. I was allergic to horses and exposed to bad weather all the time, but I was unwittingly learning self reliance, about risks, how to be responsible for something other than myself and deal with all sorts of unexpected issues.

I can relate to the long term steroids. I have photos of myself as a bean pole but then when I was about 10 everything changed as I was on steroids and putting on weight, all reflected in photos. I remember a nurse on the children's ward telling me I couldn't have ice cream as I was on something called a diet, which I assumed was another word for punishment.

I think my biggest childhood trauma was losing my dad when I was 12. I ended up on the asthma ward then missing so much school I had to repeat a year, moving away from familiar faces (again) and being the new girl (again). God I missed my dad. But despite those horrible days I came through it. Life can throw everything at us, but looking back I can now see the lessons I learned because of those experiences.

I hope you find the support that you need.

aileenc1 profile image
aileenc1 in reply to Poobah

It sounds like you have also had a tough time of it I’m so sorry for the loss of your dad. I lost my mum three years ago and it was tough so can’t imagine going through that at such a vulnerable time. You sound like you’ve taken lots of positive things from what you’ve gone through so hopefully Maddison will do the same. She is a tough cookie much more than me I’m afraid.x

I can imagine how tiring and scary this is for you. I would say the anxiety element is what needs to be addressed, as she calms down once she knows she isn't going to school. It may be that anxiety about something happening in school is triggering asthma symptoms.Peak flow should be done twice a day, so doing it more than that is just going to cause more anxiety. Try to have her do her peak flow in front of you before preventer morning and night, then take away the meter. If you're concerned she's having an attack, ring the doctor or hospital and they will do her peak flow, which means it will definitely be done properly.

Sats is a funny one, because asthmatics shouldn't really rely on it as an indicator of problems.

healthunlocked.com/asthmauk...

You need to chat with the doctor about what figures her sats should be. They should give you an asthma action plan which would help you understand when to take her to hospital and when to treat at home.

If anxiety is the driving force here though, she really needs to talk to a mental health nurse or mind to help her deal with the anxiety. That will only make things feel worse, even if the reality is that they're fine.

Best of luck to you

Thank you for getting back to me if we followed the asthma plan we would be at the hospital every day honestly. We have just had it updated but it honestly isn’t practical to go to hospital all the time as it is based around peakflo being at certain levels. Usually we would take her in if she is really obviously working much harder and the salbutamol doesn’t seem to be having much of an impact but I couldn’t count the amount of times we have driven half way to hospital and she has started to feel much better so we’ve taken her home instead. Then there’s the times we are certain a nebuliser is required and we take her in as is they just watch her for five hours. It’s awful…. We try our best to separate the anxiety and asthma out a bit but it is very difficult. X

I’m so sorry you and your daughter are having such a rough time and I really feel for you. There isn’t much support for us parents. My daughter is the same age and had counselling last winter which we paid for privately, as the wait on the NHS would have been too long. If it’s something you feel you can afford, perhaps worth looking into?

Other great mental health resources for children are the MindNinja app, the Childline website, and you yourself could chat to the helpline at Young Minds for further ideas.

When things are tough with my daughter, I get support for myself too. Are there any free mental health services on the NHS in your area that you can refer yourself to? I had some online CBT last winter to get me through a rough patch.

I hope you can find some help. All the best.

aileenc1 profile image
aileenc1 in reply to BlueHut

I’ll look into he apps you suggested the psychologist she saw last year showed her some app so look at but they were all aimed at much younger kids and she is at that in between stage of not quite being an adult I’m sorry your daughter is going through a similar time of it. Unfortunately the pandemic has put access to mental health services in high demand. I know we will get there eventually just sometimes I feel like , she’s had enough it’s someone else’s turn. Not thatI would wish it on anyone else but just feel like we are did a break . 😂

BlueHut profile image
BlueHut in reply to aileenc1

I understand that 100%. I see happy healthy children skipping out of school and I wish my daughter could just be one of them. It’s so hard.

One thing I forgot to mention, does the school provide any support? Ours has a school counsellor and also a ‘safe’ room for when the kids just need some time out.

aileenc1 profile image
aileenc1 in reply to BlueHut

Thank you for getting back to me yes her school has her on the waiting list to see a counsellor as well she has been waiting a while so I’m hoping not too long to wait now. I think talking to someone and getting out some of the fears and frustration she has will do her a world of good. I feel much better for just typing this out last night and getting some of the frustration out.x

Sorry to hear your troubles but I think this is less about her asthma and more about her anxiety. Clearly her anxiety about her asthma is very much the issue. Is she being referred to CAHMS for mental health support? I hope the waiting lists she is on are for services to support children and young people, who will be aware of specific issues that young people have and expertise to support them.Finally am surprised that school is reducing timetable for her. Doesn’t this give her more time to worry? Less time to make and keep friends? And also if she was more active during the day possibly she would sleep better? Finally this could be psychological confirming to her that her asthma is so bad she can’t attend school full time? Obviously I don’t know your situation but I would have thought it would be better for school to give more support to keep her in school.

I’m currently training to deliver low intensity CBT to children (part of the government program to reduce wait times and CAHMS referrals) and this feels very much like this is more of a mental health issue than an asthma issue. I know the two can be intertwined, but I would really look in to asking school what kind of support they can offer as there are lots of different services throughout the U.K. that work with young people in school or even online to help them through these types of issues. She may require more specialist support, but school should be able to point you in the right direction. I would also follow up with the GP to make sure her asthma is in fact under control and see if they can also possibly refer you. This sounds really difficult for both of you to be dealing with, please don’t forget about support for yourself if you need it.

It’s worth having a look around for therapy in your area. I’m currently having therapy with an organisation that’s part lottery funded, it’s on a ‘pay what you can basis’. Anything from £10 a session.

If it’s appropriate and available for children you might be lucky? Unless it’s just too complicated and needs a psychologist rather than a therapist?

I feel so much empathy for you both.

It sounds like your daughter is being robbed of an innocent, carefree childhood with friends, sleepovers (well, in non-covid times), consistent schooling, and good health.

Her behavior is quite normal in my opinion. I think it's common for severe asthmatics to constantly take our readings when we're miserable to give us some semblance of control over an otherwise frightening and unmanageable condition.

Asthma is often the worst in the middle of the night when our cortisol is lowest (it's an anti-inflammatory chemical in our bodies). It makes sense that she feels safe and protected by your side and can only sleep that way.

I can attest to how scary it is to go to sleep alone when you are having severe asthma. It's terrifying to wake up unable to breathe and especially so when you're by yourself.

She could definitely benefit from talking to a therapist regularly about how to manage a chronic illness, her feelings of anxiety, her fears around going to school, and her grief at not having a 'normal' childhood compared to her peers. The recommendation above for her to see a respiratory therapist is excellent. Do you all have an asthma management plan from your GP you follow carefully? (I'm sure you do but am just checking.)

As for you, I can only imagine how helpless you must feel seeing your young daughter fight such a frightening illness. It sounds like she is scared and miserable and needs her mama even if it feels annoying to have her waking you up every night. It's totally normal for you to have a wide range of emotions--fear anger anxiety grief denial--and none of them are right or wrong, they are just how you are responding and coping. It sounds like you could benefit from talking to a therapist too, separately from her.

Have you ever heard of the website Better Help? It is a platform for video therapy sessions. That could be a good way to start getting the support you need in a covid-friendly way while you figure out the rest.

I'm so sorry your daughter, you, and your husband are going through this. It sounds like it's been difficult and robbing you of the joyous times you deserve as a family.

I hope you can find the support you need to keep hanging in there and taking it a day at a time. When I find myself spiraling I really try to remind myself to just relax and take it easy as worrying only seems to worsen the situation. The best way to cope is to get as much medical advice and support as possible and to try to figure out how the three of you can adjust to life with a chronic illness as well as possible.

Sending hugs.

Hi. It sounds like there is a lot more going on here than just the asthma. I don’t want to sound out of turn here and I don’t know your daughter at all but have you considered the possibility that she may be on the autism spectrum? I say this because I have a daughter who has similar obsessions and anxieties and she was diagnosed at 15. As regards the anxiety it may be very useful to call the Young Minds helpline. They are absolutely fantastic and will support both the parent and the child and are good at signposting to the correct services. Their freephone number is 0808 802 5544 I hope you manage to get some help for her as it sounds like you are all suffering.

Sending my love. And by the way you are NOT a failure and please don’t feel like one. You sound like a loving caring parent to me. x

I really feel for you and echo the sentiment that you're not a failure at all. You're clearly a deeply caring and concerned parent trying to do what's right for your daughter and family. The NHS mental health resources can be wonderful, yet I also completely support the idea of seeking further advice from one of the specialist mental health charities mentioned re any services you can track down. It sounds as if you could all benefit from some high-quality therapeutic support. It seems you may need someone who can help your daughter with her anxiety, yet also to support your own anxieties and feelings. Even to safely put boundaries in place, where appropriate. But it's vital this is a very well-qualified professional and someone who will also happily liaise with your daughter's asthma team so that they never contradict the medical advice and you can feel confident that you're in safe hands. Thinking of you!

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