So if it's not glandular fever what is it???

[roundabout1]

I've posted on here a few times in the last 4/5 months. DD1 (6) has been ill on & off since beginning of January. Tonsillitis 3 times, an ear infection, lots of vague viral infections with rashes, glands up & general unwellness. She's lost weight, when feeling poorly looks awful, dark shadows under her eyes, just no spark, often has her glands up & when tired will suddenly fade & become unwell. Recently we insisted on bloods that gp had been very reluctant to do & they have come back all clear. Obviously very pleased that nothing nasty has shown up but it's very frustrating. She has missed so much school & school are insisting upon a gp's letter but without an actual diagnosis proven by tests Gp won't do one. The nurse practioner who we normally see says she has just been very unlucky & picked up loads of viruses & is run down but as far as school are concerned that sounds like an excuse & a child who is avoiding school. Anyone else had similar?

:(
Sorry you don't seem to be getting anywhere roundabout.

Hugs back.

Do you see the same GP all the time?
Could you request an appointment with a different GP?

Perhaps a different set of eyes might be able to spot something, or at least be a bit more helpful.

Good luck and I'm sorry your little girl has been so unwell.

Write down all her symptoms, keep a record of all appts and see another GP. Get bloods redone. Push, push, push for a referral to an immunologist/consultant.

I had this as a teenager and was told that it is quite common for teenage girls to have these kinds of immune system issues. I lost a year of school. Finally I was diagnosed with 'possible Glandular Fever'. Fast forward 18 years and I now know I have a diagnosis of Sarcoidosis and receive ongoing treatment. My current consultant believes I never had glandular fever and in fact suffered repeated flare-ups which were ignored or considered viruses by my local GP.

Crumbs I thought we were talking about a teenager! Sorry!

Teach me to read more closely, won't it?

Thank you everyone, we have seen two different gp's, one didn't see there was anything physical wrong despite the history & thought it was emotional. The other has been better & dd likes him but this time was disappointing. Think I will leave it a few weeks, make a list of every symptom & if something new however small take her again. Even if all the vague problems continue with no new problems I will take her back with a diary of symptoms along with a list of the amount of days off she's had from school & push for a referral.

Well she's had a better few days although way off 100% now she's got back from school completely exhausted & complaining of feeling sick & stomach ache. I know the heat won't help & from what I can make out all the girls seemed to be squabbling so is probably fed up of that too. I'm so fed up by this so can only imagine how fed up she is. I feel a bit stressed every morning at how well or not she will wake up & how she will be at school pick up, hate planning things because think is there any point as we may end up cancelling. Just feel like our life is on hold & for not definite reason. Sorry very self indulgent moan over.

So sorry to hear you havent got any further forward.

I would push for a referral to the hospital paed like others have suggested. Ours was bounced back twice with DS as he didnt fit the criteria to be seen but if they had seen him he wouldnt have been left to suffer for all of those months with his collapsed lungs and GF.

Is there any chance you can ask for a private referral like we did. Until that point no one was interested via the NHS. Thank goodness we did!

Your poor DD and poor you.

I have absolutely no idea in your case but I have ME which presents like gf but doctors can be less clued up on it. There are special children's clinics at some hospitals. I know several of my students were supported when I was a teacher as they physically couldn't be in all the time and the symptoms would be nothing then a crash and exhaustion.

I had GF as a child and it was very frustrating, my mum thought I was faking, the doctor was useless, in the end my mum changed my doctor and we found out I had GF.

Sorry your dd is going through similar

I too had GF.
I find if my water levels get too low, bang hello glands.
It seems daft but keep her water level really high, so she visits toilets a lot. It's a sort of flushing through thing. Believe me I tried everything for GF. But downing 2 pints of water can have me feeling better in an hour.

I had answered on an older thread but think I've name changed since then
Hope she is having a spell of good days

Thanks everyone
I have noticed if she doesn't drink enough she gets worse so am pushing fluids all the time. She has had a good week this week so far (touch wood!) is shattered at bedtime still & feeling poorly quite often but happy to go to school which is a huge relief. Fingers crossed she stays well so can actually enjoy half term - without overdoing it & then back to square one of course!!

Sorry - haven't read the whole thread but I think the gist is that people get false negatives. I had about 3 negative tests as a child and even the doctor thought I was malingering. I was starting to feel much better and then got my positive (queue me milking it for another 6 months and having loads of unnecessary time off school ).

Cue even. That's what happens when bathing kids whilst on mn.

Sounds like you've lost confidence in your GP. I think that means you have to get a new one.

Well we've had half term & dd still wasn't great, had a few good days but most days she spent a few hours lying in bed complaining of the vague earache/sore throat, crampy legs. To be honest as awful as it sounds I am pleased that she's not been well over the hols as it shows it's not just avoidance of school or stress. Back to a different gp on tuesday so we'll see how we get on then!

We went to see a different GP on tues who had a medical student with them so dd got a thorough going over. We have at last been referred to a paediatrician, only took almost 6 mths & 17 gp appointments! Typically dd was well when we saw the gp but later that day started complaining of low stomach pains which progressively got worse over night. She does seem to be prone to uti's so took her to see the nurse practitioner who had the same medical student sitting in with her. This nurse is normally very nice but was decidedly off with me, not sure if she thought I was wasting her time as had been in the day before (when dd was well) or if it was a bit embarassing with the medical student there. Anyway she did send a urine sample off but I got the feeling she doesn't want to see us back anytime soon. Oh well at least we have the referral.

hope you get more info and help from your referral
it is a v tricky thing with anyone with this type if illness - i have had 3 tests for gf and they came back with diff results.i also had to basically be ill for 6 months without improvement before i got my diagnosis of ME
i know some doctors used to be a bit unhelpful about what could be wrong especially with dcs- hope things improve for your dd
best wishes

Thanks out2lunch - well in the past 8 days she's been unwell for 5 all the same vague symptoms. Normally I would take her to the docs to have her throat & chest checked - she complains of a tight chest & being out of breath but not really badly her throat is very red but no spots on her tonsils. As the nurse was arsey last week I don't know if I dare go again unless she's a lot worse.

Sorry to hear you havent had any answers yet

Dont be put of by stroppy nurses, if they knew what was wrong you wouldnt have to keep going back and your DD would be well again.

Its such a long battle but keep pushing for answers.

XX

Have you got the results for her IgG? If it's positive it can indicate that she had glandular fever even if the GF is negative.

I'd push for more blood tests. My DS4 is currently in great Ormond st and being prodded, scanned and x-rayed. Trying to eliminate eveyyhing before they settle on their initial diagnosis of systemic juvenile arthritis. Which has symptoms like fever, rash and joint pain (you mention crampy legs?). And also stomach pains (enlarged spleen and or liver). We did a scan of his liver and spleen a few weeks back and they were clear. This time round the spleen was v enlarged.

Good luck. This is the time to be the pushy parent.

Back at doctors today as still slightly breathless, nurse practicioner this time very good & nice like normal. She chased referral & an appointment letter was sent out y'day. She thoroughly checked dd over including blood oxygen levels & peak flow, all ok. Thinks it may be her adenoids that are enlarged causing the breathlessness.
drcrab - I haven't any of her results so not sure but will check with & will defintely ask for copies of any letters from the hospital to gp. Sorry your ds has been so poorly, hope they sort out a diagnosis soon & they can help him feel better.

Sorry your DD is still feeling unwell.

Has she been checked for coeliac disease? The feeling sick, tummy ache, lethargy, bags under the eyes, sometimes feeling ok then not were all my symptoms. I had lots of other seemingly random ones (cough, breathlessness, dizziness & generally falling apart). I picked up every virus going as my immune system was so weak. I never had any of the classic diarrhoea/constipation so it never felt food related.

It took a year to get diagnosed & I went privately in the end.

suckeddry - I hadn't thought about that as in my ignorance thought it was just fatigue & tummy trouble. Can that suddenly come on then? I have the paed appointment come through which is in 4 weeks time, not a long wait in the grand scheme of things but it is all getting to all of us now, for 2/3 of the school year dd has been like this. Feel tempted to take her to A & E but dh told me I was being ridiculous as she's not ill ill. I know what he means but I just feel so frustrated by it all.

I thought coeliacs too. But there is a whole host of other things too. I really hope you get to see a good paediatrician.