Feeling sad

My son Thomas has had brittle asthma since he was nine months old - he is now 12 years old. Even after all of this time I am still terrified when he starts to have an attack and he has had many.

We have finally being given a nebuliser at home and that has helped as well as having the steroids at home to administer after a phone call to the doctor. But I am always scared it will not work.

I had always hoped he would grow out of it but no luck so far. I guess I am feeling a bit sorry for myself tonight as it is like living with a permanent cloud over us - always waiting for the next attack. I just feel very tired by it all.

[yaf_user681_15459]

Just want to send a huge hug to you.

My daughter is coming up 5yrs old and brittle too. It's like living on a knifes edge isn't it.

She has been on maintenance pred for the last two years and that's eased my fear so much as its kept things at bay (mostly!!). We are now weaning her off them and my fears are back. I'm constantly watching her and looking for signs. It's so scary relying on meds and begging them to work. :-((

I hope that things are settled for you soon.

Take care and you know where we all are.

Emily x

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Thank you Emily- it is nice to talk to people who understand. It was the lack of sleep talking last night but you are right about living on a knifes edge. I have the consultant appointment today so maybe something positive will come out of it.

I think I am having to come to terms with this condition never going away - I thought it would but with Thomas turning twelve it is forcing me to face up to the fact that it may not.

When you say maintenance pred - do you mean the steroids? I think that is the next step for Tom - so far the consultant has tried to keep Tom off those long term but it is very stressful watching and waiting for the next attack.

Thank you for your understanding - it really helps to talk to someone who understands the stress of it all.

Jo

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Hi Jo, just wanted to say that I'm a brittle - in my 20s. Have home nebs and am on maintenance pred. Been struggling really for the last 9 months to get below 30mg, so can fully understand how upsetting and frustrating it must be going through it. It's also bad enough going through it personally, but must be heartbreaking watching your child go through it.

I get where you're coming from anticipating the next attack - I've been out of hospital 11 days now which is the second longest period in recent months and am actually feeling pretty good. However rather than thinking positive about it I'm still wondering when I will end up in again - then I get cross with myself!

Hoping the cons apt goes well! Hugs. Laura x

[yaf_user681_15459]

Hi,

Yes maintenance pred is the steroid tablets. She has had them daily for over two yrs now and it's changed our lives!! We used to live in fear. She couldn't walk more than 50-100yrds. Now seems so much better. However, as I said, we are reducing them now and symptoms are returning and leaving me very nervous!! It's an awful feeling. Couple that with extreme tiredness from dealing with asthma during the night hours, and that's enough to make any of us feel dreadful!!

As I said before, send u huge hugs. Know how you are feeling hun.

Take care,

Emily xx