Trying to cope with pre-teen brittle Athmatic....

Hi all,

My daughter is 11. She was diagnosed with asthma aged 6, when shortly after diagnosis ended up in High dependency whilst we were on a skiing holiday in Italy. A few flare-up later, and she was completely over it. until last December, when she ended up in hospital for a few days with Pneumonia. since then, we are averaging a hospital admission every 4 weeks. all allergy testing is negative, she's on singulair, cetirizine, seretide 125 2 puffs twice a day (being weaned down from 250 2 puffs twice a day), atrovent when needed, and of course salbutamol. Her lung function when well is excellent, Peak flows averaging 350-370 daily when well. however every few weeks she 'goes off' wether it be due to sore tonsils (awaiting tonsillectomy next month) or viral infection, or no other reason. Her peak flow dives, she's tight and wheezy, then struggles to speak and only responds to 10puffs of salbutamol at a time and ends up in hospital because she's only able to last 45mins to an hour between doses.She's had very little time without prednisolone in the past year, but thankfully her short synacthen test shows her adrenal glands are working fine. She's now on a prednisolone reducing regime. She's gained 2kg in 1 month, her emotions are all over the place, her behaviour is awful at times. She feels weak and tired and seems to want to sleep alot. She's missed alot of High school, which she's just started. She misses out on holidays, birthday parties, she can't go to alot of her friends houses because their parents smoke. My husband and I are missing alot of work, I'm training to be a midwife and have missed alot of my studies, and our income is being affected. We can't plan holidays or trips away. And our poor girl is feeling increasingly isolated, frustrated, and worryingly, is becoming reckless. She's been referred to a psychologist/counsellor, and I'm wondering if I need one myself! I can't sleep at night because I'm continuously checking on her and I fear I'll walk into her room one day and find her collapsed (or worse).

Is anyone else having similar issues, and if there are ways of coping with this? The care our daughter receives at the hospital is excellent, but after our last admission we're suffering a bit of family turmoil as she nearly collapsed because she had a temper tantrum at being told to take her inhaler, and ended up blue and unable to speak, and refused to go to hospital.

Any advice would be much appreciated

[yaf_user681_14340]

oh how i remember those days!

My asthma became brittle when i was 10 and oh how my poor parents suffered in hind sight i really think that my rebellious behaviour (no wanting to take inhalers, wanting to go out to friends etc) was probably due to the fact that i wanted nothing more than a normal life. I think it is important to encourage your daughter to take responsability for her own medications and allow her to make decisions about what she can do and when. It might be worth sitting her down and explaining to her why you are so worried about her and why it is important to take meds. if she cant go to friends houses for sleepovers etc invite them to yours as this will give her a social life with the security of you there. Sometimes i think that asthma can be worse for the families and friends as they can only watch and get that helpless feeling, but be careful to try and not show too much anxiety towards her as this will highten her feeling of ""theres something wrong with me and i can live the same as everyone else""

Unfortunately there is no easy answer but hang in there take any help that is being offered to you and don't forget that there are plently people here that can offer advice and support

[Hidden]

hi and Welcome, if you go on the home page and go down to the bottom right you will see 3 small rectangle shapes and you want the one that says kick A. Have a look and its for teens etc to join and would be good for her xxx

[angievere]

My son's asthma worsened at 11 (he's 14 now) and we went through a really rough period. The consultant told us at the time that it's to do with the onset of puberty and he comes across it a lot. Also going to secondary school there is a whole new germ pool - certainly our son was ill all the time with colds etc.

Like your daughter he's missed a lot of school and also missed out on parties, outings, sport etc. Fortunately things are better now, his school attendance was 78% last academic year, a big improvement on previous years. He's on the same drugs as your daughter, plus meds for bad rhinitis and Theophylline. The latter is a bit heavy duty but it's really helped him. He also takes extra vits - Vit C and D, and a multi vit for teenagers.

With regard to hols, Asthma UK organise a hol for asthmatic children every year. Our son has been for the past 2 years and has absolutely loved them. They do a range of activities, the staff are really super and they take excellent care of the children. It really helped my son to be with a lot of other children with asthma, and realise he was not alone. They had sessions on coping with asthma too, which were very useful.

Feel free to PM me, I know what you are going through. But believe me, there is light at the end of the tunnel.

[Hidden]

thanks everyone, feeling a bit better already - have had some lovely PM's and am immensely cheered up (and been given food for thought) by scrolling my through the threads on this site

Athma is hard work - something I've known as a previous brittle asthmatic myself (now well controlled), as a health professional working in respiratory medicine, but nothing prepares you for how to cope with your kids when they are sick. I'm learning a huge amount reading the stories here, and I hope it'll make me a better nurse as a result

[Hidden]

I have so much sympathy for you. My daughter is 10 and is brittle asthmatic. She is on seritide, salbutamol, montelukast, uniphyllin, prednisolone (permanent for the past two years), methotrexate, folic acid, vit d, desloratadine and flixonase.

she is also seeing physiologist as well as a CAMHS counsellor. Some days she refuses to take her medication and gets very upset. She finds it hard to form friendships because of the time off school. She often asked the question why me. She has put on lots of weight due to the steroids and has to see a dietitian. Her diet is restricted any way due to allergies and now we have to watch her weight. Her whole life is affected and it breaks my heart to see her suffering. she feels very lonely especially because her two brothers don't have anything. The counselling is helping her.there its light at the end of the tunnel. Stay strong and if you wish to PM me then please feel free to. Our if your daughter wants to PM and chat with my daughter.