Quite concerned about DD, what would you do?

[ElfOnTheTopShelf]

DD recently has been getting really difficult to wake up in the morning. She is five years old and her bedtime is seven. Mostly she is asleep by 7:15. I wake her up approx 6:45/7:00 in the morning so we can get ready to leave the house, so nearly 12 hours sleep a night.
For a few weeks she was complaining every now and again of a tummy ache, took her to the docs who said UTI and she had a course of antibiotics.
This week she has become extremely clingy, difficult to wake up in the morning, very emotional, and has been going to bed sooner and sooner each night, and getting more difficult to wake in the morning. She's also a bit off her food, one day this week she had a slice of toast for breakfast, at lunch she ate half a sandwich, and tea she had half a toastie, and she didn't want anything else.
Yesterday she had spent nearly 45 minutes crying at the childminders house before I picked her up, she alternates between saying nothing is wrong / she's just tired / she's worried the new baby will be smelly (I am 35 weeks pg, but up til now, she's seemed fine at the idea of having a sibling). I took her home last night, she was in bed and asleep at 5:45, she slept until 7:10 this morning. I have picked her up, and apparently she has been asleep "several times" today in class, slept for an hour at the childminders, and is currently lying in bed now.
I did try to get her in our docs, but they cannot see her until next thursday.
In these cirumstances, WWYD? DH says to ring nhs direct, but I'm not sure if we're just being paranoid. Any advice would be appreciated. Some people have suggested that she may be naturally worried about the new arrival, and this is what is making her a bit emotional, but surely wouldn't put her off her food and make her sleep excessively?

Bump How is she?

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Hi, really sorry not to have come back to this thread, and apologies for people who have been wondering what has been happening.

DD is generally okay, she has several days in a row where she is fine (loud, dancing around, happy child) so we try not to worry, but then she'll have the odd day of being quite fatigued, though thats usually when we have been out and about, for example, on Saturday she went to dance and then we went for a walk around the water park, and that evening she was a bit tearful and tired.

She still has bruises, but is quite clumsy at the moment and tripping over so its hard to know if she's bruising more easily or whether she's just bruising as usual but very clumsy!

School have said that she's okay if a little clingy, but they did think that was because DD has been panicking about the baby arriving and the CM was on holiday too for a week so they thought it was a bit too much of a change for her, making her a bit clingy. She hasn't fallen asleep in school since before the easter holidays.

We have got her booked into the doctors for next week (routine appointment) and will take a print of this thread. Still going to push for a blood test, have been giving her lots of food with added iron and juices etc, and giving her a multi vit.

Elf - has she had a blood test for Lyme disease? Fatigue and a sore neck could both be symptoms. A lot of people who get it don't realise they had a tick bite.

Make sure you do push for a blood test, my first thoughts on reading your OP was Kidney Infection -

the anti'bs might not have worked properly & its spread up her urinary tract - some bugs need different anti B's - the standard ones won't work & only a blood test or lab culture can determine WHICH drug she actually needs

nitrates in her urine can be a sign of that & chronic infections can sometimes come WITHOUT a high temp

I've a history of kidney infections, which amongst making me exhausted, weepy & very run down also seemed to make me prone to bruising easily - weird thing is, often the symptoms can vary so much - I've been hospitalised with a bad one & not felt too bad or have been sick & diareah & lost weight quickly, with kidney pain & yet the blood count showed a milder infection.

She does need seeing & it curing properly, so please DON"T let your GP fob you off - left untreated it can cause permanent damage to her kidneys.

In the mean time you might want to give her cranberry juice to drink - dilute with water or soda water if she doesn't like the taste - it will help keep the infection down to a minimum - when well it can stop it coming back all together

good luck & I hope she's better soon

To update anybody who was wondering... DD has had her blood taken, just waiting for the results, hopefully should get them tomorrow (guessing, she had them done at the hospital on Friday, they may be back at the surgery Tue/Wed?).

I have been lurking around (sounds sinister) and was wondering how you were all getting on. I hope the results are helpful. Best wishes .

How did it go? :)

Just caught this thread I really hope the bloods turned out okay and all is ok with your LO how worrying for you all .

Well, got the blood results back today (they were at the surgery on Friday, but the doctors kept forgetting to get in touch with me!). The doctor says that everything looks fine with her bloods. Which put my mind at ease until this evening, DD is in bed, having cried at 6:30 saying she wanted to read a book but she was too tired. She went to bed and was fast asleep straight away bless her. I just don't get why she is so tired and still bruising so easily if all the tests are saying she's fine. In the week she only goes to school, and she gets lots of sleep.

I dont know what to say but could you maybe ask for another opinion? It doesnt seem right she is tired all the time you must be so worried.xx

I don't want to be alarmist, so please don't worry, but if you know something isn't right and you aren't getting anywhere with GP, take her to A&E. I had to do this with my DD last year. I knew she was ill, things were not getting better, and the GP concluded that it was all manner of things from excess stomach acid, pulled muscles, etc.

She was tired - falling asleep all the time - really pale, hardly eating. She went on holiday with her Dad (I thought she was okay to go at that point, it was early days) and ended up in hospital abroad having tests. She came home, I took her back to GP who continued with broad speculation. In the end, out of despair, I took her to A&E myself as I was worried and not getting anywhere. I had to do this several times. Bloods showed nothing, but she was definitely ill. This whole debacle went on from October-January. They did refer her from A&E into a children's assessment clinic where they began to suspect she had Crohn's. We were still being sent home whilst tests were scheduled.

However, in January things took a worrying turn when her eye drooped down her face. I thought she'd had a stroke. My Dh took her into hospital (I had hideous flu bug) and they kept her in Children's Medicine for a few days. she saw all manner of specialists. They still thought she had Crohn's. Things like her 'pulled muscle' according to my GP showed up as severe swelling on her joints when she was given a number of scans. They were doing lots of bloods. We finally got sent home to wait for more tests, when I was called by the consultant. Something unexpected had shown up in the bloods. We had to go straight in and we were sent onto the Children's Oncology where we were told she had leukaemia.

I was also told that it is so rare that GPs often miss it because they can go through their whole career without encountering it.

I had to push and take her to hospital myself because I knew something was wrong. If you are certain that something is wrong, then do the same.

The hospital was fine - I told them I was worried and my GP hadn't helped. They tested her thoroughly from the first time I took her in. They weren't annoyed that I'd taken that action.

I really didn't want to post as I know how scary this must sound to you, but I thought in the circumstances that this story might help you. Do not be afraid to take matters into your own hands if you feel the GP hasn't resolved things for you.

I hope everything is okay and I am sorry if this upsets you. It could be all manner of things (the symptoms are indicative of many illnesses, aside from cancers) but ultimately, we know our own children, and you seem to be clear that she isn't well.

Best wishes.

its really frustarting, as she has days where she seems perfectly fine, running around and a tad hyper (she's usually a live wire). But then she's having days where she's really tired and pretty miserable with it.
What does a full blood count test for?

Mariah i hope your daughter is doing okay and I agree you know your own child.
OP do take her to A & E and insist they do something x

how is your daughter now Mariah?

She is 7 months into chemo, currently having the really intensive bit. She's managed to stay out of hospital this time though, so I'm really hopeful she manages the next few weeks without too many problems although she's been delayed at the moment as her counts are too low to continue. But once she gets past this bit, she is onto milder chemo and we can start trying to go back to normal. We are hoping she will manage to phase back into school in September and that means I will eventually get back to work myself. Treatment for girls lasts just over 2 years. She has ALL.

She also had ups and downs. Some days she was normal, and others she was flagging. We now know it is because her bloods were fluctuating and she will have been falling anemic. However, she had frequent blood tests over this time and they were always normal! We were told it was a fluke that someone more experienced was looking at her blood in January and recognised the leukaemia blasts in her blood. I think cancer tests have to be specifically requested. I had a cancer scare a couple of years ago myself, and I remember the test forms were extremely specific. Routine blood tests don't check for it apparently. Her white counts were the opposite of what they'd expected too. I think they were slightly high - indicating infection - but the specialists would have expected them to be low with leukaemia (can't remember exactly as it was a blur of tests and things being thrown at us).

All I did was take her to A&E and say I'm really worried, and it went from there. She had shown an enlarged liver on scans taken whilst she was abroad (we now know leukaemia causes organs to enlarge) and she was being a bit sick, but not that frequently. The main worry was the lethargy and tiredness, and aching joints. She didn't particularly bruise either, but this is a symptom of low platelets in the blood which is also a symptom of leukaemia.

As I said before though, many of this symptoms can also be attributed to other blood disorders and illnesses. If you are very worried, go to A&E. If you want to give your GP another shot, ask them to refer you to children's medicine at the hospital. Meanwhile, if anything changes or you become more concerned, take her to hospital. I felt I had to fight to get a diagnosis. When I have spoken to other parents in children's cancer, many of them said the same - it is rare, and often dismissed as overly-concerned parents. Sometimes it might be, but sometimes it can be more serious - as my DD shows. You must trust your own instincts and do not worry about upsetting people within these institutions, ultimately it is your DD, your family and that is far more important than bypassing your GP.

My GP has never once mentioned that day. I spoke to him on the phone from outside the surgery as he wouldn't see DD and he said (after another pale, lethargic sick episode at school) he thought it might be colic and to pop and see him later on that day. I looked at DD in back of car, all pale and poorly, and thought sod it and went to hospital. I am so glad I did.

Was your DD really emotional before she was diagnosed? DD seems to have gone from a happy go lucky child to being very easily upset. I don't know if it is just a side effect from being tired.

But would like to also point out I had to be pushy with them too. They did refer her into their system straight away (in early November), but after the first day of tests threw up not much, we were sent away. I took her back for an appointment when they said they thought she had Crohn's, then home again to wait for more tests. She was really ill again, so took her back to A&E and was sent home again to wait for tests (the doctor told me she looked 'fine' and to stop worrying, after all the nurses had commented how poorly she looked. that was December). Only when her eye drooped in January did they admit her. It was an arse. I have been assured that this time will have made no difference to the progress of her illness, but from what I have read I do not think this is really the case.

My posts are LONG!

DD is also, unrelated, Asperger's, so difficult to judge emotionally. She was falling asleep in random places and taking herself off to bed at early times. She is 12, so is highly unusual behaviour.

I honestly think from what you have written about your DDs tiredness, bruising and lack of appetite (first post) that you need to get her checked out, just in case.

When I say she was really ill, so we took her back to hospital, I mean really white, dizzy at times, falling asleep, no interest in food, aching joints, sometimes sick/upset tummy - though that wasn't frequent.

Hi Elf - I just saw your thread today and when I read your opening post it sounded very like my dd when she was aged 7 and it turned out that she had CFS/ ME. I know you've had lots of suggestions and theories so I don't want to confuse with another, but I certainly didn't realise that children could have CFS. Initially my dd was tested for tumours/ blood disorders/ coeliac/ diabetes etc but in the absence of all of these and with her symptoms CFS was the diagnosis. She is now 9 and almost better. It just might be worth a look. My dd seemed to undergo a total personality change at the outset - crying/ clingy/ grumpy/ etc etc which retrospectively we realised was due to her just feeling so exhausted. There is a thread on mumsnet of parents with kids with CFS. It's a bit quiet at the moment, but if you read the old threads you might find them helpful.
Hope she and you are having a good day today.

If you are worried that your dd may have something quite specifically wrong with her or that they are not taking you seriously, one tactic I've found useful is to say that you are worried that her symptoms could indicate xxx and/ or yyy and that you want to exclude these.

If they try to dismiss these worries then ask them to explain exactly why not and also ask them to document in the notes that they refused to look into xxx and yyy despite symptoms a, b and c being present.

Unfortunately in these times of expensive litigation and professional insurance premiums this tends to concentrate their minds on what might happen to them if they were wrong - whereas if nothing is on the notes about xxx or yyy being raised, they can just bluster about it being like something else and that as xxx or yyy being so rare they never thought about it.

Not an ideal way of going about things I know but when you have found a gp to not be very helpful and you have reasonable suspicions about something serious it's worth it. It's also worth asking them what the knock on effects are if it does turn out to be xxx but isn't diagnosed at an early stage but instead at a much later stage..

Good luck and hope your daughter is soon back to her normal self.

I hope you are okay elf. I was concerned about posting my story as I didn't want to upset you. It's a really difficult situation as it could be age, or a series of viral infections (those milder things that people get when the doctor doesn't really knows what it is ). My post is an extreme example of what can happen. I just wanted to encourage you not to worry about challenging what you have been told.

Many of us have been brought up to respect authority figures, like GPs, and to regard them as experts. However, this isn't always the case, but I know how difficult it can be to challenge them on what they say. I avoided a direct confrontation by going to A&E myself. Another way would be to go en masse to the GP with your DH/DP or parents for back up. Zipzap's tactic is sound - most people would fear making an error if it has been recorded.

I do hope both you and you DD are alright. It is an awful position to be in.

please go and demand more. I have already posted about dh and his cancer and lack of concern from GP, who only listened once we went on mass. His white count was only so high because the CML was so out of control, but previously they would have needed to look at blast cells.
Please go and keep us updated.

Hi there, tiredness, bruising easily and also random "sore" places combined with clumsiness could be a sign of hypermobility. I have this condition and it comes and goes, I would push for better diagnosis and insist she is referred to a paedeatrician or a consultant in skin conditions. If your child is also stressed or worried it makes all the symptons worse which may be why it is surfacing now so noticeably.

I would also try taking her to an osteopath to see if there is muscular skeletal stress as well.