Asthma UK community forum
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frightening experience!

Hi, some of you may remember me from my previous posts on my 4 year old niece Ellie Mayn who suffers from severe asthma. Last week, I was walking through a shopping centre with ellie and my partner, ironically before our weekly visit to GOSH. Ellie was wearing her mask which she has been advised to wear in public places, which helps to filter out the clean air. All of a sudden, ellie collapsed and had a massive asthma attack. She was unconcoius afterwards, and two ambulances were called (and the shopping centre blocked off) The noises she was making were horrific and until the paramedics arrived we had no real way of helping her. There were many kind people who stopped to help ellie, who was then rushed to hospital. She has since been ventilated 24/7, doctors do not think she is ready to breathe alone just yet.

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Oh how absolutely terrifying and sad.

You poor poor things. Poor Ellie.

Please keep us informed how she is doing. Thinking and praying for her.

Lots of love,

Emily.x

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Must be an awful shock for all of you. I take she is in intensive care if ventilated? May sound odd but it can really be the best place for now with the staff to patient ratio. It can take some time to recover enough for her to breath alone so don't be disheartened too much by this. Hope she's doing ok and they think she's stable.

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Gosh, how awful for you all and poor Ellie, I do hope she starts to feel better soon.

Like the others' have said please keep us informed of her progress.

I am thinking and praying for you all.

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wishing ellie all the best. i hope you are all doing ok. an awful time for all of you. tj is right she will be getting the best care from excellent staff. take care.chell

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I hope all is good. hope shes progressing well and sats are rising

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I remember you posting before and have been wondering how things were going. So sorry to hear about the attack, very frightening all round. Hope Ellie is better now. xx

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Oh my goodness, that sounds absolutely terrifying!! :(

Sending get well soon wishes to Ellie xx

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It is shockingly unfair that such a little one should suffer so much bless her. So lucky to have such amazing family all devoted to her though. My thoughts are with you and hope they can do more to help her live a little more like a four year old princess should soon xxxx

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Oh my, God be with you all. Let the doctors help her recover soon. My thoughts and prayers are with you all.

Gill

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Poor Ellie, I hope she's strong enough to breathe on her own soon and it's not too long till she's able to come home to her family.

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Wow how frightening! Poor, poor Ellie. Really hoping and praying she's ok and soon ready to breathe alone again.

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Yes I do remember your previous posts and often wandered how little Ellie was doing! So sorry to hear what an awful time you are all going through, please let us know how she is doing. Thinking of you all, Clare x

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I was just wondering how you all are. I do hope that ellie is improving. thinking of you all.chell.xx

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I was just wondering how you all are. I do hope that ellie is improving. thinking of you all.chell.xx

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my gosh how frightening, awful experience for you and the family!!

what caused such a severe attack?

how is lil ellie now, hope she is okay and breathing on her own and her stay in costa is a quick one having made a speedy, steady recovery :) thinking of you :)

x x x

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Thank you for all of the kind words, means a lot! Unfortuatley, the doctors at Great Ormond Street are not seeing any improvement in her condition, and she also has developed suspected poliomyletis, which the specailists have said is related to such a severe attack. She is still in intensive care, being ventilated. Its so horrible to see her like this, you can barley see an inch of skin, her tiny body is covered in tubes and machines. Will try and keep you updated, and thanks again for all the concern x

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thinking of you all. i hope that ellie starts to improve soon.chell.xx

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Sorry to hear that ellie had such a very bad attack and I hope that she has improved some what by now. I know it can be very scary and my thoughts are with you and your family well you go through all of this.

take care

lisa

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sorry to hear poor ellie is still ventilated. at least its giving her lil body time to recover :)

hope she be off the ventilator soon so she can have big hugs with u all :)

thinking of u and prayers for u xxx

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thinking of you all

hugs

ndam x x x

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hugsss

Bless her cotton socks I do hope she is on the mend, its bad enough for us grown ups to have to suffer this, but when its a child it tears your heart out to watch.

xxx

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I do hope Ellie is starting to improve, it is a difficult time for you all.

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hi i just wondered how lil ellie was doing?

hope she breathing on her own now so she can give you all hugs :)

x x x

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Uncle Jasper how is Ellie getting on now? My thoughts and prayers are with you all.

Gill

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Uncle Kasper,

How is Ellie doing, is she breathing on her own now?

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just wondered how you all are doing. is ellie making progress. thinking of you all.m.xx

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How is Ellie doing now.

I am thinking of you all

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i was just wondering how ellie is doing. thinking of you all. chell.xx

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hi uncle kasper.

just a quick note to let you know ellie and all of you are still in my thoughts. hope you feel able to update us soon

geina x

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Thanks so much for all the concern, means a lot :-)

Ellie is still in hospital, but is starting to breathe on her own, so a great improvement. She is still being fed through tubes and has to wear various equipment, but is no longer being ventilated 24 \7. The doctors are saying this was one of the worst cases they have experienced, so she is doing well. She is expected to be in hospital for about another month if she continues to improve. Can't wait for her to come home!

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Such good news to hear she is turning a corner. Love an dbest wishes to you all.

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Hello Uncle Kasper

What an awful time you have all been through, glad to hear Ellie is turning the corner at last, can't begin to imagine what you have all been through!

Thinking of you all.

Clare X

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Aw, good to hear she's doing ok!

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Went to visit ellie again this morning, and unfortunately she has had abit of a set back. She was starting to spend short periods of time off the ventilator, and when we arrived on the ward she seemed perkier than she had (moving her head slightly and looking around the room, wheras before she was virtually motionless) .

After we had been sat with her about ten minutes, just quietly speaking and reassuring her, as I'm sure all of you with children in hospital do, she starting making this awful gasping sound. We called for help, and luckily ellies nurse came, and she then called a team of doctors who, with the help of several large machines, tubes, masks etc, managed to get ellie breathing steadily on the ventilator again. The doctors have said that it will certainly not be safe to leave her un ventalated any time soon. She has been having massages about 3 times a day and is still on numerous medications. She is so weak though! The hospital are trying to see if a wheelchair could possibly be designed to accomodate ellie and the equipment she needs, so that she can at least be out of her bed for a couple of minutes in the day.

X

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Unclekasper, I am glad you got to reassure Ellie and the doctors/ nurses are looking after her. Hope they get the wheelchair sorted so she gets a few minutes out of her bed. You are all in our thoughts and prayers.

Love Gill

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Also, I know this is an asthma forum, but we got a call from the hospital saying they have detected some abnormalities in her heart, and are going to test this as soon as possible. Her temperature has also been fluctuating rapidly, doctors are unsure why as yet tho.

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So sorry to hear Ellie is still struggling - thinking of you and the family and wishing you all the best.

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So sorry that Ellie has had another setback. Shes so lucky to have you there for support. Massive hugs to you all. Thinking of you all and wishing you all lots of love.x

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My heart breaks hearing Ellie is struggling again, thinking of you all.

Clare X

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I am so sorry that Ellie has had a set back, I am thinking of you all.

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thinking if you all. big hugs to ellie. chell.xc

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I'm so sorry to hear of Ellie's setback :(

My thoughts are with you all

Dawn x

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How is Ellie doing now, my thoughts are with you all

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My thoughts are with you all! I hope Ellie is getting better.

Love Diane.x

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Hope Ellie is off vent soon and hope her heart is sorted when bit better. My thoughts are with you all .love glynis x

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I am sending greetings again and expecting to hear better news about Ellie's recovery. Take care Uncle Kasper and God bless.

Gill

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morning uncle kasper

hope all is as well as can be with you and the family. still thinking of ellie and hoping she is improving.

geina x

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Hello

I just wandered how Ellie is, thinking of you all.

Clare x

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Hoping ellie is making progress. Love to you all. Chellie.xx

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oh unclekasper sorry to hear bout ellie's setback hope she doing better soon

big hugs and kisses to her

xx

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how is Ellie doing uncle Kasper? my thoughts and prayers are still with you all

gill

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Hello uncle kasper. I was just wondering how ellie ia doing. I hope she is improving. Chell.xx

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I am still thinking/praying for you all. How is Ellie now?

gill

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Hello, thanks for the concern everyone.

Unfortunately, Ellie is still struggling to breathe alone so is spending most of her time ventilated. Doctors have also found abnormalities in her heart, which they say is likely to need operating on in the future. She is on so much medication and has been drip fed for the past few months. They are saying that this is one of the worst cases they have ever dealt with, but there is a chance of her pulling though this.

xx

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Uncle Kasper I have been praying for Ellie since your very 1st posts. I pray the doctors find out the best way to treat her, be it her heart, the asthma or whatever. You look after yourself and the rest of the family. Thank you for the update. i will still continue praying.

Yours

Gill

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Hi Uncle Kasper

Sorry to hear poor Ellie is still struggling, thinking and praying hard for you all.

Thank you for the update as you can see from all the posts we have all been thinking about you and Ellie.

Clare xx

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Thanks Uncle Kasper for the update,

sorry to hear Ellie is still struggling. It's a long slow marathon and fight back to breathing alone. Hope you are all looking after yourselves too. Thinking of her and hope there will be progress soon.

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I'm so sad to read that poor little Ellie is still struggling so much :( You're all in my thoughts xx

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Thanks everyone .. They are now saying Ellie needs to be operated on asap, but is still to weak to cope with such a big op. Her breathing is very irregular still and she is constantly ventilated and receiving more medication than can be named, including at least 7 injections a day, plus the medication she has through the masks and tubes she is constantly connected to. She has also lost so much weight, she has always been tiny but now even more so!

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Also, forgot to mention she has been fitting, possibly related to her heart. Also just received a phonecall saying her oxygen levels are lower than normal tonight, and as the machine is already at its highest, this may cause her further probs. They said that there is not much medication we haven't tried, so at the moment being wired up to all these machines is the only way to keep her going, with round the clock monitoring and care.

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Oh Uncle Kasper I am so sorry to hear that Ellie is still struggling so much bless her, thinking of you all and praying she will turn the corner.

Clare Xx

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God bless Ellie, thinking of her xxx

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Hi

Thank you for posting Uncle Kasper about Ellie present condition, I am still praying for her. I pray the doctors find a mix of medicines that works. I also pray you and the rest of the family.

Gill

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So sorry to hear this, really hope something improves soon for Ellie.

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Helllo everyone,

Ellies condition is still v much the same, after a very scary episode the other day where she had an extreme reaction to medication she has been having for the past few months. However, she has now stablised and the fits have eased, following more steriod injections. She is also due to have her op next thursday, providing she doesn't worsen.

The hospital received a visit from David Hasslehoff too, and he told her she was very brave!

Thanks for all the concern!

X

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Sorry to hear Ellie is still so poorly, praying that things start to get better for her soon. xx

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Hi Uncle Kasper How did Ellie op go? I have been in hospital for 6 days so only just catching up.

Gill

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Hello Uncle Kasper

How is Ellie doing? Thinking of you all.

Clare x

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Hi Uncle Kasper how is little Ellie? My thoughts and prayers are with you. Her doctors will find a good solution.

Gill

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Hi Uncle Kasper

Just wondering how everyone is and how you're all holding up.

Geina x

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To Uncle Kasper

Do hope Ellie is improving and getting stronger. So her doctors can take the next steps. Pray you and the family get all the support you need too.

Gill

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Is there any update on Ellie? Have been reading all the previous posts & I'm so sorry that a such a young girl is having to cope with all this. I hope there is some improvement in her condition & I'll have her name (& the family) added onto the list of people to be prayed for at church today.

My thoughts are with you all & I hope there is some good news soon.

Best wishes

Rabbit

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Uncle Kasper, is there an update on Ellie, I do hope she is improving.

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Uncle Kasper how are you all doing?

Gill

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Hi Uncle Kasper,

I was wondering how Ellie is.

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Hi Uncle Kasper

Any news on Ellie? Thinking of you all.

Clare

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still thinking of you

Hi Uncle Kasper

Still keeping you, Ellie and the family in my thoughts.

Geina x

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Ur in my thoughts uncle Kasper and little Ellie.

gill

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How is Ellie doing?

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Hi all,

Thank you for all your concern and sorry for the long delay!

Ellie has been discharged from hospital and is now living at home with her mother (my sister) and her older brother.

She is very weak and on 24 hour oxgen, but she has visits from an asthma specialist to her home up to 5 times a week, and he said we should be able to cut down her oxygen soon. She is in a wheelchair as walking would be too draining for her. Thanks again for everyones concern

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Thank you for the update Uncle Kasper

So sorry to hear life is still so tough for Ellie, sending love and good wishes to you all

Clare x

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Thank you for the update Uncle Kasper, I'm sorry that Ellie is still going through a rough time, may she gradually regain her strength and vitality.

My thoughts are with you all

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thankyou for the update Unkle Kasper. I'm sorry that it's still so tough going for you all. I'm sure Ellie is happier with her family though.

Geina x

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Hey!

Just wondering how Ellie has been getting on at home, hope shes doing well, how are you bigger people doing also?!

X

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Poor little one, hope she's fighting fit and off the ventillator soon.

thinking of you all.

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