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Original poster

Really poorly dd.. any words of comfort /advice appreciated

48 replies

DJAngel · 31/12/2010 21:12

DD has been ill since xmas day.. high fevers snotty,coughing loads and most awful thing for me is that she has basically been asleep since xmas night with a few wakings to see GP/ Dr in hospital yesterday and to give drugs.. currently on usual anti-convulsants and anti-biotics initially for chest infection and now for tonsilitis spotted by dr at hospital yesterday. Her breathing is a worry, sitting by her bed have just managed to give inhalers and that has helped a bit I think but still 45 breaths a minute and should be 25-30.

She vomited her anti-convulsants up earlier too.. spoke to the hospital who advised to try again later on..

She's been needing to have ibuprofen and calpol to keep fever down, and even with that fever is till 38.5.

Her chest sounds so wheezy. Has never been diagnosed with asthma really despite being given inhalers but looking like she may have it..so GP says..

I'm so worried. Think I'm going to spend yet another night in her room making sure she's breathing ok.. Great way to see the new year in. Her sleeping is freaking me out, some of you may remember that she just doesn't normally sleep! Since xmas day she's been so hard to rouse. It's awful to see her like this. The medics don't seem concerned by this.. has anyone else's dc been so wacked out by flu? We're having to give her drinks propped up in her sleep so she doesn't get de-hydrated!

I know some of you deal with far worse than this everyday but I think because of her Tuberous sclerosis background I'm frightened that she will not be able to fight this off.. Irrational probably but feel she's so poorly..

Worst of all- it's ds's 7th birthday tomorrow and he's been so good and today was so upset that he's hardly seen me this week and now I can't go out with him as planned tomorrow coz I need to be with dd. She has been sleeping on me since boxing day and if I try and slink away for a pee or wash she cries.. Feel so bad for ds..

So sorry for long ranty post, in a mess really and so tired as well.. Thanks for reading.. Here's hoping for an easier new year for us all..:(

OP posts:
purplepidjbauble · 31/12/2010 21:35

And chocolate via IV

meltedmarsbars · 31/12/2010 21:47

Hang on in there!

willowthecat · 31/12/2010 21:53

It must be so tough - but really hope she improves soon.

Lougle · 31/12/2010 21:53

DJ, I am not going to offer hugs and sympathy, simply because you sound like you are right to be worried!! well, go on then

If you are worried, and you can't rouse her, and more crucially this is so very out of character for her, you need to stamp your feet.

What did the docs say at the hospital? Have they assessed her effectively for dehydration? Is she weeing? What is the plan over the next few days?

If she is that poorly, isn't drinking, is vomitting meds and has epilepsy, they need to be taking her more seriously, IMO. I think another trip to hospital may be wise, tbh.

Original poster
DJAngel · 31/12/2010 22:41

Well the docs at the hospital seemed to think she is tired because she has flu and that it's normal..I'm not so sure, but what else would be wrong? I don't really know?

We called out GP again at teatime today and he said she seems ok to stay at home. She was calmer then and breathing was better. He said she's not dehydrated. She's got wet nappies albeit much lighter than normal..

Dr at hospital when I rang earlier just said we should keep giving water little and often which we are and to keep on with drugs to bring down temp.. I have a feeling unless there's a dramatic improvement by tomorrow morning we'll all be down to the hospital again tomorrow.. great birthday pressie for ds.

Dreading tonight.. she is very rattly but quite cool at present.. Her cot is now right next to my bed so I can lay down whilst listening to her at least and reassure her when she stirs.. She has been too hot to sleep for too long with me..

Thanks so much for lovely replies, can't tell you how much it helps. DH and I barely speaking coz both tired stressed and worried..

OP posts:
starfishmummy · 31/12/2010 22:56

Hugs

5inthebed · 31/12/2010 22:56

Oh how scary for you both :(

I hope she perks up a bit tomorrow. (((hugs)))

Both myself and DH had flu a few weeks ago, it is a orrible and draining thing to have. We had to sleep on rota to look after the DC.

Original poster
DJAngel · 01/01/2011 06:42

She's sleeping next to me now but quite scary night.. Nearly phoned ambulance but then her temp did start to come down.. Phoned the ward again just now as not happy and we're taking her in again. Have to wake up ds in a minute.. We'll take his pressies with us and he'll have to open them on the ward. Really sad about that as well as worrying re dd.. this is going to be a crap birthday for him. We'll have to try and make it up to him.

Feel quite nauseous as totally sleep deprived.. Hoping they'll keep her in and work out how to help her start to get better. Last night was too scary to do again tonight.

OP posts:
sarah293 · 01/01/2011 11:39

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Message withdrawn

5inthebed · 01/01/2011 11:41

Happy birthday to your DS.

Hope your DD is getting the help she needs now in hospital and that you can get some rest.

Thinking of you all.

Lougle · 01/01/2011 11:50

Happy Birthday Master Angel. I hope little Miss Angel is well soon, DJ.

TotalChaos · 01/01/2011 16:35

Sorry you have had such agrotty start to the new year, hope hospital have been helpful

intothewest · 01/01/2011 16:59

hope she is better soon and you can get some sleep and happy birthday ds angel- hopefully he can have his treat with you when dd is better

moosemama · 01/01/2011 18:39

Sorry to hear how poorly your dd is and how frightening its all been. Hope you managed to get better support from the hospital today.

My ds2 was just like this with flu which developed into pneumonia two years ago. He basically slept for a fortnight (one week at home and another in hospital) so I do think that that's fairly typical for this type of illness, he also only managed tiny sips of juice and didn't eat a scrap of food for about 8 or 9 days. He only finally ate something because he wanted to come home and they wouldn't let him until he'd eaten - he managed 4 Wotsit crisps, as we just offered him his favourites and let him choose.

I was just the same as you, up all night keeping vigil by his bedside and taking his temp regularly. My only advice is to make sure you remember to eat and drink regularly yourself - even if its just small snacks. (I lived on bottled water, grapes and crisps). My heart goes out to you its exhausting and frightening - just horrible.

I would say, go with your gut feelings and be firm with the doctors though. Ds2 was seen by 3 different gps before an out-of-hours gp finally took me seriously about how ill he was and bluelighted him to hospital. You know your dd best and I sometimes find certain doctors need to be reminded of this.

Hope she turns the corner soon and is up and about in time for a belated birthday celebration with her brother really soon.

Oh and I know its really unmnetty, but have some ((hugs)) as well. Smile

Eveiebaby · 01/01/2011 20:33

Hope your poor DD is feeling better soon

ihavenewsockson · 01/01/2011 20:41

Hope she's feeling better and they are keeping a close eye on her.
Unmnetty hugs for you.

moosemama · 04/01/2011 11:31

How is she doing DJAngel. I've been thinking about her and sending love and light. x

chocolatespread · 05/01/2011 00:00

I feel so much for you! DS2 had a cold that all three had a couple of weeks ago. The other two sailed through it but his temperature went sky high and he just stared at the ceiling for hours and didn't eat for days. That was bad enough, so you must be really going through it.

DayShiftDoris · 05/01/2011 00:20

Hope she's ok x x x

PixieOnaLeaf · 05/01/2011 00:39

This reply has been deleted

Message withdrawn

Original poster
DJAngel · 05/01/2011 13:02

Thanks all of you or your lovely messages. Moosemama I am so relieved to hear that your ds2 was how you described.. It's how dd2 has been.

She's been in hospital since new years day and I have been there- awake- since then but last night couldn't cope very well so have come home ( to chaos ) and am in bed with lap top to try and get some rest as dh took over this morning and I'll go back to hospital with ds1 after school.

She has serious pneumonia. I'm so livid with all the doctors who saw her beforehand but anyway, that's for later on.

We have had a nightmare and I can't believe how ill she is.. She's still reliant on oxygen and now has a nasal gastro tube.. Thye almost did a lumberpuncture but her platelets were low so couldn't but did suspect some brain infection as well as chest but they don't know. She had a CT scan and no worrying signs there, apart from all the tumours she's always had but they now feel she is sleeping because she is so whacked out although one paed thinks she possibly having some seizure type stuff going on.

Does anyone have experience of this? Because she's so sleepy and when is alert isn't really with it at all there is the possibility that she may be having sleeping type seizures. When she was admitted and they were trying to work out what was wrong her paed said she could be in sub clinical status. It's been very scary and still not resolved.

Having spoken to her neuro at St Georges paeds now saying we wait for signs of improvement for chest and hope she improves neurologically. They removed her melatonin and cut her clobazam by a third to try and rouse her and yesterday she was awake for 10 hours but not very present just quite agitated and trying to sit up and get on all fours and pulling at her tubes.. 10 hours of that did me in.. I asked them to give her melatonin I was so desperate and feel so bad today coz she's just sleeping again, but I was so exhausted and sobbing I couldn't cope. Feel quite pathetic but realise I can't do all her care on my own now.. It's too much.

One thing worrying me and making me very upset. She is not communicating with us at all. I'm longing for a word to come out or some sign of recognition of something familiar. This doesn't look good to me.:(

Is this familiar to anyone?

Sorry for mammoth post but knew you would all get how I'm feeling and I know I don't post a lot but some of you may have knowledge of dd - and epilepsy and being REALLY ill when you're compromised neurologically..

It's pretty shit and we'll be in for quite a while I think. dh may post here when I'm back in the hospital but was so pleased to have lovely replies to posts just now.

Thanks so much..

OP posts:
shaz298 · 05/01/2011 13:15

I've just seen this. How awful they didn't listen to you before, I really hope your wee girl improves soon.

Hopefully with the right antibiotics now she will perk up quickly.

What a scarey situation for you and sadly it happens a lot. I ended up in hospital with double pneumonia after various chest x-rays and being continually told it was upper resp infection!! Sorry but I just don't really trust G.P.s.

Got everything crossed here for speedy recovery. Hugs to you. xx

TheCrunchyside · 05/01/2011 14:26

So sorry your dd is so poorly. I'm afraid I don't have any helpful advice.

You are right to get some rest as you need to be on good form to advocate for your dd.

Would dh be able to do tonight and you take over again tomorrow?

FanjoForTheMincePies · 05/01/2011 16:03

My DD was quite ill recently and also just shut down and slept all the time, didn't communicate and didn't show an interest in anything, once she recovered she became her old self again, so don't despair. (although I know you have the epilepsy to consider too)

FanjoForTheMincePies · 05/01/2011 16:05

I mean, even when she was awake she showed no interest in anything.