Feel like giving up:(

[yaf_user681_15459]

We had an urgent review with Maddies respiratory consultant today.

We've had a really bad week with symptoms. She had quite a bad attack suddenly on Sat and close to another on Sun.

We ended up on the ward yesterday as she was out of breath and wheezy. Hence the urgent review.

Anyway, today I was told that this is as good as we can expect! I asked what ''controlled' is. And was told that at the end of the spectrum that Maddie is, to expect these symptoms daily.

I feel as if I've been told there's not much else they can do for my little girl.

I came out and sobbed!

Maddie is out of breath several times a day! She can't keep up with her sister and is often in emergency situations! Just this morning, a couple of hours prior to our appointment, I was giving her 10 puffs as she couldn't get her breath. All she wanted was to walk!

I just dont know how to deal with this news!

It was manageable when it was just my emotions, but now Maddie can see how she falls short of her peers, it's heartbreaking!

Sorry, don't necessarily want replies, just need to get it out

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am so sorry to hear to hear bout maddie

there is always SOMETHING MORE they can do, surely? she is a child!

can they offer you counsellng support to help you?

hope u are okay and the family too

sending u big hugs

xxx

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I am so very sorry to hear that maddie is struggling so much. As a mum i can so totally understand how very desperate you feel.

Life is sure tricky at times. You will find it in you to keep going, but please please make sure you seek support for yourself. We are hear to listen anytime, but sometimes mummys under pressure need abit more. I hope you all get some rest tonite.chell.xx

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So sorry to read your post, it sounds awful that she is noticing the difference between herself and her peers and as a mum its heartbreaking. Children are resilent little people who have amazing strengths and I am sure she will excell in other ways. As a mum its so scary and frighting not being able to help when your child is poorly and we probably feel it more than they do. Sending you all my best wishes and try and make sure you get some time to talk things over.

With Love x

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emily35

Again for like the other posting, mother of Alex, I am so sorry to hear this.

You don't say how old your daughter is but please ask for another opinion at a regional centre where they will have lots of experience with this type of condition. If you are a regional centre you can alway ask for a second opinion from another centre. You might not have to travel to it but they can review the notes. If the consultant will not do it ask the GP or visa versa.

We deal with many children in our regional service who has severe, difficult to contral asthma & I have never heard any of our consultant say that to a patient.

In addition, you might want to ask to see the consultant again when you are calmer & ask them to explain it again and tell them how it came across to you. Did they really mean to say there was nothing else they can do? Or did they not communicate what they really wanted to say very well.

Please dont give up as I am sure there is more that can be done.

A

[yaf_user681_15459]

Hi Ann,

Maddie is two and a half. She is on Budesonide nebules twice daily, Montelukast, serevent, ventolin, anti-hists, and Omeprazole.

She is under two consultants, both of whom are very good and empathetic. We also have a community resp specialist nurse who is a very good support.

The consultNt on Tuesday was quite blunt and stated that it wouldn't get any better than now, and that we had to learn to live and deal with it. She said the next stage of drugs would be daily maintenance Pred. And obviously they don't want to do that.

I just feel at the end of the road. That things aren't going to get easier.

Today however, we had a speech therapist visit us about Maddies choking problems. She explained a lot and explained why Maddie is aspirating food. (food on bronchoscopy) I now feel I have some answers.

I guess I DO have to get used to this and stop trying to fight it but deal with it. It's just been a very hard journey. Maddie is v v breathless a lot of the time but ventolin really does help, so that's a huge plus! Mind you, we are getting through so many inhalers!!

This IS a journey and I know it will be challenging, but after several days of tears, I feel a bit stronger and armed to cope.

Thank you all so very very much for your lovely messages and support. This site has really helped me hugely. You are all very special.

Lots of love,

Emily.x