Never ending battle!!

[KK1719]

Hi all.

We have just joined today . My daughter (14) has severe very uncontrolled Asthma, it feels like a never ending battle and over the last 3 years have spent more time in hospital than at home (that's how it feels).

It seems like all the specialist do is give her more medication to where it seems like they actually don't know how to control her asthma. The difficulty being that she does not have normal triggers like most asthmatics, she does have triggers of course but mostly she has exacerbations for no reason whatsoever!!

I was advised to come on to asthma forums for support as we feel so low and I am struggling to keep her positive as she feels like she does not have a future anyway so why bother. It is soul destroying listening to how she feels and that she just doesn't want to fight anymore. I feel completely useless, angry, and some emotions that I just cannot explain.

We do not have anyone who understands our isolation or our life. I try so hard to be positive but its so difficult when you never get a break from it.

Any advice would be greatly appreciated

[Minushabens]

Hi...I posted on your other topic about the schools, but I think for any 14 yo life seems a bit rubbish a lot of the time, for an asthmatic even worse. At that age I finally realised that my top 3 career wishes (pilot, footballer, astronaut) were all out of the window. Ignore the fact I was probably useless at all three, the point is I cursed incessantly why I had it, and at that age is was very bad & uncontrolled.

I don't know what the medical answer is for her, but life can & does get better. There are treatments now that weren't around when I was 14, so there is every possibility new research & learning will come along for her.

I think from my own experience what I really needed at that age was to feel normal. It was hard when I was always the one that couldn't run around, play football; later on I couldn't handle pubs for all the smoke, etc., but it is really important (in my opinion) not to define her by her illness, but by who she is.

I'm sure you do all that, but thought I'd say it anyway!!

I know it's tough & there are no easy answers, but it's a long old life & I'm sure things can & will improve for her.

Good luck.

[Katt-37]

I can't give much advice as I've never been in your shoes. All I can do is send you hugs. Thinking of you and your daughter and hoping things get better for you both.

[KK1719]

Thank you both. I am still up at this time of night because I'm worried tonight. Thought that we were going to be in hospital as her lung function is down at 65%, but nope yet again just upped her dose of pred for five days, she has been on steroids constantly now for two years and there is no sign of them taking her off of them. They are not a long term solution for Asthma and she has put on so much weight .

I feel like they have taken my daughter away . she was once so full of life, she was bubbly, funny, now she hates herself and doesn't even feel like she has anything to live for. I'm struggling to stay strong for her because it is destroying me watching her get lower and lower with what it seems like no support from healthcare professionals.

I am thinking of getting a second opinion , do you think that this is a waste of our time??

Thank you in advance for listening and taking time to reply

[pucageorgie]

Hi, I replied on your other thread too, but thought I'd join in here as well. My daughter was younger when she was as ill as that, and she too had been on steroids for over a year and gained massive amounts of weight. The good news was that once we were able to wean her off steroids the weight just melted off her.

My daughter grew quite depressed and started getting phobic about getting in trouble with me or her teacher, and getting terribly anxious about all sorts of things. I found her a counsellor and we got through it together with steady work; it sounds bizarre, but at one stage I sat with her at the kitchen table encouraging her to shout "F***" at the top of her voice to see that she wouldn't get in trouble and that it wouldn't be the end of the world! She's now cheeky and moody and back-answers me like a regular teen, and I relish it. I'd talk to your GP about some counselling for your daughter. There might be a teen support group she could join? Feeling isolated is awful at that age. Maybe she could start a thread here herself looking for other teens in the same position?

You're definitely not alone

[KK1719]

It doesn't k like she is going to get off the steroids, the specialists have said that she may have to prepare herself that she may have to be on them long term... Which as you can imagine did not go down well.

My daughter is going through very similar emotions just now, she has come home early from school sobbing and so very low.. She feels like she isn't getting enough support. She is refusing to go back and wants to change school, which is very unlike her. I have stepped up quickly and have contacted the right professionals , stating legislation and law with education and disability, funnily I have an appointment tomorrow and a big meeting is set up for next week with all healthcare professionals involved with her care.

Why does it take you to have to make threats and throw in rights for them to do something.?.