# Poorly Girl



## newbs (May 10, 2016)

My little girl has been really poorly for over a week, admitted to hospital last Thursday.  She started with a really high temperature and headache last Sunday and got a little worse each day, off her food, tummy pains etc.  On Wednesday she was really poorly so I took her drs but he couldn't find any specific infection, just a really high temp (39.8).  Thursday morning she woke up with a non-blanching rash so I rushed her to the dr and they sent her straight to hospital.  After loads of tests they ruled out meningitis and leukaemia but are still not sure whether it is viral or lupus, they know her blood isn't clotting properly.  One blood test has to be done again in a few days.  We have been discharged but Sunday night and yesterday she had 3 nosebleeds and now has a black eye.  Dr saw her again and if any more nosebleeds or bruises it will be back to paediatrics.  It's been such a scary time.


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## grovesy (May 10, 2016)

Hope they find some answers and she is better soon.


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## Northerner (May 10, 2016)

Oh my goodness newbs, poor soul!  I do hope that they can get to the bottom of it and that she recovers soon {{{HUGS}}}


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## Caroline (May 10, 2016)

I hope your little girl is better soon, it is really scary to have a sick child and no one is sure what it is. I have heard of a couple of rare cases where it has been something really simple and it has got better in a couple of weeks. I hope recovery is quicker for your little girl


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## Robin (May 10, 2016)

Oh my goodness, what an awful worry for you. I do hope she's better soon and it's something transient.


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## Stitch147 (May 10, 2016)

Hope she is better soon.


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## KookyCat (May 10, 2016)

Oh poor little thing, that must be really scary for her, and you of course.  I hope they sort it out quickly, fingers crossed she's feeling very much better really soon X


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## Redkite (May 10, 2016)

Gosh newbs, hope they get to the bottom of these symptoms soon and your little girl starts to feel better.  Glad not meningitis, but how scary. xx


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## Amigo (May 10, 2016)

What a scary, stressful time for you all. Hope they find answers soon and she's a brave little girl.


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## AlisonM (May 10, 2016)

Oh my! I hope they find the answer very soon.


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## Bloden (May 11, 2016)

That's awful, Newbs. I hope they get to the bottom of her illness asap. Sending big (((HUGS))) for all of you.


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## Sally71 (May 11, 2016)

That sounds terrible, hope the doctors can sort her out soon!


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## Lindarose (May 11, 2016)

I hope your daughter is improving newbs. A terrible time for you both xx


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## newbs (May 18, 2016)

Thank you for your messages – to update you all, it is has been a very stressful week!

Following the appearance of the black eye last week I spoke to the hospital after her gp didn’t take it seriously.  The hospital booked her in again for the next morning as they felt it needed to be seen.  I took her to the hospital on Wednesday morning and she was admitted, following blood tests.  Her blood tests showed a problem with the clotting of her blood, problems with her INR and something else.  Wednesday night she was monitored all night 2 hourly, woken and shone a light in her eyes and asked to speak as they were checking for a bleed on the brain.  Thursday they took more blood and monitored her 4 hourly instead.  Friday the consultant decided that she was well enough to go home as her blood results had showed “slight improvement” so she had more blood taken before discharge – “to double-check” things were going in the right direction, and she was booked for more blood tests on 10th June which they assumed would then be normal.

Monday afternoon the hospital phoned to say that her latest bloods do not show the improvement as before and were in fact showing more abnormalities, so we are off to the hospital again tomorrow for more blood tests! 

I have been told it is viral, then threatened with social services as she was a child with an unexplained black eye, then told that she had an extremely serious blood clotting disorder that needed 3 weekly injections for life (and probably a trip to Bristol Children's Hospital), then told actually it looked like it was probably viral after all - and now we are back to it being potentially serious again! 

She has been an absolute star, not complained or cried once, even when the magic cream burnt the skin off her arms so now she just has to have a bit of cold spray before blood tests!


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## Northerner (May 18, 2016)

Oh my goodness, I really do feel for you all {{{{HUGS}}}} She's so brave! I do hope that they can get a firm diagnosis very soon and that it is something easily treatable once they know for certain what they are treating. Take care and please update us when you can - hoping for the best possible outcome!


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## Stitch147 (May 18, 2016)

Blimey newbs! I hope that they manage to get to the bottom of it all soon. It cant be very nice for her, or you, having to go through it all. Lets hope you can get a correct diagnosis and tretment soon. X


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## Robin (May 18, 2016)

Oh goodness, I do hope things resolve themselves soon. Best wishes to your daughter, and don't forget to take care of yourself. It's easy to focus on your children and forget about yourself.


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## grovesy (May 18, 2016)

Oh dear, hope you get it sorted soon.


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## Diabeticliberty (May 18, 2016)

You say she is a star and I have to wholeheartedly agree with you. I also think that you are an absolute star too for holding things together. Personally I think I would have have gone completely to bits. She sounds so brave and as everyone else on here has said I hope that she and you see some much needed improvements in her condition. Stress can and usually does monkey around with blood sugars and you must be absolutely stressed beyond belief. Please keep an eye on your own blood sugars. I do so hope that she gets better very soon. Take care


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## Pumper_Sue (May 18, 2016)

Hi Newbs how is your daughter doing now? Fingers and toes firmly crossed things have improved and she is feeling much better.


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## Lindarose (May 18, 2016)

I'm so sorry you and your daughter are going through such a tough time. Seeing our children suffer is so stressful and upsetting. But she sounds amazing. I'm sending lots of good wishes for a speedy recovery. Take care.


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## trophywench (May 18, 2016)

The trouble with people in some position of authority eg teachers and folk that work in schools generally, is that they are more concerned about themselves being blamed for a child having eg a black eye - than they are about the child and or their family's welfare.

Poor baby and poor mummy!!  I can only hope they can find a reason and a solution pdq.

And - I actually might want to complain about your GP too - I'm afraid I think HE should have rung Paediatrics at the hospital for their advice after asking you to repair to the waiting room whilst he did.  Or he should have gone into a different room to do it leaving you in the privacy of his office would have been better really.


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## Redkite (May 18, 2016)

Poor little soul.  Hope they reach a proper diagnosis soon, must be so worrying. xx


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## KateR (May 19, 2016)

Oh goodness, I'm so sorry for your daughter. I hope the hospital gets to the bottom of it soon and she recovers quickly.


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## newbs (May 20, 2016)

So more blood taken today, this time from her hand, as her arms still haven't healed from being burnt by the cream.  She was a star again, watched them do it, and they told her she was star patient of the day and gave her a teddy which she is so proud of!  Unfortunately they think it is less likely to be viral and resolve now as it is continuing for so long, her blood still isn't clotting properly - and they still don't know why!  She has now got an assigned consultant and he will contact me when he has the latest blood results to see where we go from there.


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## Robin (May 20, 2016)

Oh Newbs, I'm sorry it's still continuing, you must be so worried. I hope you manage to get some rest and relaxation over the weekend


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## Northerner (May 20, 2016)

Brave girl!  I hope the tests come back soon and the consultant can identify the problem straightaway


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## grovesy (May 20, 2016)

Let's hope they find the answers.


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## KookyCat (May 20, 2016)

Sorry it's not looking simpler but hopefully they'll have her sorted soon.  Just having a definitive diagnosis will be a step forward at least.  You've got a very brave girl there X


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## Carolg (May 22, 2016)

Sorry news, just read this post. Hope you get answers soon, and best wishes for both of you.


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## Lindarose (May 22, 2016)

Thinking of you and your very brave little girl xx


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## newbs (May 24, 2016)

Zoe's consultant called yesterday, he said it is still very serious and that it will be a long road to recovery with a lot of blood tests and watching in the meantime.  He spoke to Bristol again yesterday and they still feel that a virus has attacked her blood, although she is not recovering as they would expect.  They have decided to "watch and wait" for 6 weeks, then retest her blood.  If things are still the same then they will have to decide on a plan of action.  That could still mean going to Bristol and will probably mean long term treatment.  Any more bruising or bleeding in the meantime then I have to take her back to the Children's Unit for reassessment. Zoe has now banned me from asking her if she is ok!  Said she will tell me if she isn't!  She's such a determined little thing, just as well really.   I have booked an appointment with a gp (different one with sense) to ask some questions to and get her to explain her blood problem to me, and some of the things said, in plain English.


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## Robin (May 24, 2016)

Oh poor Zoe, and poor you! Waiting and worrying is awful. I do hope it resolves itself.


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## Northerner (May 24, 2016)

I am sorry to hear this  I hope that the doctor can clarify what is happening for you - so frustrating when they use medical obfuscation to avoid explaining things properly to you.

{{{HUGS}}} for you all, and keeping fingers crossed for a good outcome


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## Stitch147 (May 24, 2016)

Fingers crossed for a good outcome from all her tests and I hope they can get to the bottom of it soon. X


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## Lindarose (May 25, 2016)

I hope the next few weeks show an improvement and Zoe feels better soon xx


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## KookyCat (May 25, 2016)

Good girl Zoe, she's obviously going to handle things very well, a little trooper.  Hopefully they'll start to see some improvement soon.  I hope the GP appointment goes well and you get some straightforward explanations  X


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## newbs (Jun 11, 2016)

The gp appointment didn't go that well, she didn't really know anymore than me.

Last Sunday Zoe started feeling unwell again, same symptoms as before, leg pains etc.  She didn't go to school on Monday but wanted to go back on Tuesday.  Tuesday she had 3 nose bleeds, 1 at school and 2 after.  I spoke with her consultant's secretary and we have now been given 24 hr open access to the ward she was on and if she has any more bleeding/bruising I have to take her there.  Her consultant (in fact both that I received letters from) is away but back on Monday so will call me to discuss what they are planning to do on his return.


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## Carolg (Jun 11, 2016)

newbs said:


> The gp appointment didn't go that well, she didn't really know anymore than me.
> 
> Last Sunday Zoe started feeling unwell again, same symptoms as before, leg pains etc.  She didn't go to school on Monday but wanted to go back on Tuesday.  Tuesday she had 3 nose bleeds, 1 at school and 2 after.  I spoke with her consultant's secretary and we have now been given 24 hr open access to the ward she was on and if she has any more bleeding/bruising I have to take her there.  Her consultant (in fact both that I received letters from) is away but back on Monday so will call me to discuss what they are planning to do on his return.


Thinking of you both. Hope you get to the bottom of this, answers and treatment and good you have been given open access, cuts out a lot of the stress of should I shouldn't I and for Zoe waiting around hospitals etc


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## grovesy (Jun 11, 2016)

Good luck.


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## AJLang (Jun 11, 2016)

Thinking of you both and so sorry that you are both going through. I hope that start working out how to help your daughter xx


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## Bloden (Jun 16, 2016)

Sending you all big ((((HUGS)))).


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## newbs (Jun 21, 2016)

Have finally spoken with Zoe's Consultant, who says they are still a little bit in the dark as to what is going on.  The lead haematologist from Bristol still feels that it has all been caused by a virus and is not from an underlying condition, and he said there are inhibitors in her blood which are stopping it from clotting.  They are putting together a clinic for the "unusual, urgent cases" and Zoe will be on the list as soon as they have set a date.  She is getting more blood taken on 15th July if she has not been seen before then.  Thankfully, no more nose bleeds since the last 3 and she has her appetite back, so fingers crossed she stays this way.


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## Robin (Jun 21, 2016)

Glad she's going on OK, fingers crossed it doesn't recur.


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## Northerner (Jun 21, 2016)

newbs said:


> Have finally spoken with Zoe's Consultant, who says they are still a little bit in the dark as to what is going on.  The lead haematologist from Bristol still feels that it has all been caused by a virus and is not from an underlying condition, and he said there are inhibitors in her blood which are stopping it from clotting.  They are putting together a clinic for the "unusual, urgent cases" and Zoe will be on the list as soon as they have set a date.  She is getting more blood taken on 15th July if she has not been seen before then.  Thankfully, no more nose bleeds since the last 3 and she has her appetite back, so fingers crossed she stays this way.


Oh, that sounds promising - I really hope that she is on the mend and that she recovers fully very soon


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## Stitch147 (Jun 21, 2016)

Fingers crossed she keeps on improving and hopefully you'll get some answers really soon.


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## Redkite (Jun 21, 2016)

Sorry to hear Zoe's condition hasn't cleared up yet.  Hope the consultant gives you an appointment soon so they can get to the bottom of it, and hope she feels 100% again very soon. xx


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## grovesy (Jun 21, 2016)

Glad she is improving but sorry to hear  they have not found the cause!


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## Lindarose (Jun 21, 2016)

Glad Zoe is doing ok and hope appt comes through soon.


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## newbs (Jun 23, 2016)

We have a consultant appointment on the 4th July.


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## grovesy (Jun 23, 2016)

Good luck!


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## HOBIE (Jun 24, 2016)

newbs said:


> Have finally spoken with Zoe's Consultant, who says they are still a little bit in the dark as to what is going on.  The lead haematologist from Bristol still feels that it has all been caused by a virus and is not from an underlying condition, and he said there are inhibitors in her blood which are stopping it from clotting.  They are putting together a clinic for the "unusual, urgent cases" and Zoe will be on the list as soon as they have set a date.  She is getting more blood taken on 15th July if she has not been seen before then.  Thankfully, no more nose bleeds since the last 3 and she has her appetite back, so fingers crossed she stays this way.


I am old school when it comes to appetite, If you get it back you should be heading in right direction ?   Really hope so & good luck from us all


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## newbs (Aug 4, 2016)

Sorry for the delay in updating you all, been an eventful few weeks for various reasons.  We saw the consultant on 4th July and he examined her and went through everything and said that he felt she looked healthy and that everything was settling down and there would be no need for any more investigations if the latest bloods (which they took on that day) came back within range as he thought they would.  He did say he had not yet heard back from the special meeting of the haematologists at Bristol and would write to me about that.  Zoe asked about her very prominent veins and he said that it is possible that she has a condition relating to connective tissue disorders but tested her flexibility etc. and said he thought probably not.  Bloods were taken and we were sent on our way.  Last week it was Zoe's birthday and we had a party for her at a soft indoor play area.  Before bed when I took her leggings off I was shocked to see her lower legs were absolutely covered in large bruises.  I took her to the gp on Monday who was also concerned and said this is abnormal so phoned the hospital - who say they are still waiting for her blood results from 4th July!  They have however made her a consultant appointment for the 26th September.  So on it goes ... At least she is feeling fine in herself so is not bothered by any of it at the moment.  Still worrying though.


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## Lindarose (Aug 4, 2016)

Thanks for keeping us updated newbs. 
It does seem a very long time to wait for Zoe's appointment and  s long time for you to worry. 
I suppose they can't consider it very urgent. But if her GP was concerned could you speak to him again and see if he can expedite it? 
I'm glad Zoe is feeling well. That's a very good sign. Hope things go well.


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## KookyCat (Aug 4, 2016)

Oh Crickey, they move slowly don't they, you're showing admirable patience.  I hope they get an answer quickly, and if it is viral then I hope the virus packs up and leaves soon X


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