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?

anyone?

Hi, I think you replied to my thread about my dd1 last week, sorry i did not get back to that thread. My dd1 has been similar to yours, although is a little older (9), so i've able to send her into school a little more.

We went back to the gp last week as she now has tummy pain, the gp thinks her tummy glands are swollen, she also has golf ball size glands in her throat, so she has had penicillin for 7 days incase of throat infection. He went through her blood results and everything is completly normal and he said it can be normal for children to go through periods of illness like this.

One thing I did find out when researching glandular fever is that many people test negitive, when they actually have it, especially children.

Sorry i'm not really sure what to suggest, I'm just keeping a close eye on my dd1, if she needs the gp again I think i'll be pushing for more answers.

You can get false negatives on Glandular Fever. DS's friend was clearly suffering for a few months and originally had a negative for GF but then a couple of months later he got a positive.

this provides good information on testing

Thank you, I waswondering about a false negative test myself. The nurse yesterday did say that there are other viruses that mirror gf which they cannot test, this week it has been more of a stomach ache, feeling sick & headache which I know there are a lot of bugs about at the mo but whatever she has she always seem to have certain symptoms. For the first 3 months or so this was sudden onset of temperature, appearing flushed, swollen glands & suddenly sounding as if she had a really bad cold, all coming on over 5/10 mins or so. Then more recently her face looks puffy all around her chin, becomes pale & dark shadows under her eyes, again all coming on quickly. It is happening most days at night & first thing in the morning & she will always complain of feeling sick & tummy ache at these times. The puffiness often subsides & along with it the general feeling unwellness. These last few days she's been poorly again this has stayed pretty much constant. I really want to get her into see the gp but it's proving almost impossible to get to see one.

My son had this sort of thing and had many tests but always tested negative for GF, although the doctor did think he had it, they said it is very hard to spot on blood tests. Stick it out with the doctors and you have my sympathies as it is so hard to see a child ill and feel that no one is doing anything about it.

Thank you, the other thing I was wondering was could it be some sort of allergy, a few people have commented that it sounds like it could be but not had any experience of it myself so not sure.

Oh no, dd was unwell last week & was absent from school on thurs & fri, by fri lunchtime she was lots better but still very lethargic. Saturday she looked poorly still & very obviously not herself but said she was feeling better. Went out sat pm & most of the day today as she seemed much better, now she is puffy, has huge dark shadows under her eyes & is complaining of stomach ache & feeling sick. Now I feel completely stressed, she must be ok for school tomorrow, we saw so many people over the weekend & she was having fun although to me she didn't look 100%. I think there is defintely an element of sundayitis going on, since missing so much school she does get worried about going back & she has SATS at the mo.

How's your dd today, did you get her into school?

i don't know anything about allergies, but there is an allergy board on here, so might be worth posting your dd symptoms on there to see if anyone has any ideas.

Oh thanks Mrs Lego I didn't know there was an allergies one. Dd looked ill this morning & was complaining of stomach ache & discomfort when weeing so took her to the nurse this morning, they tested a sample that showed white cells in it so is going to the lab, she asked me if I wanted some antibiotics today or to leave it & if required get some specific to the infection if there is one on wed, I chose to leave it, the nurse advised this but gave me the choice. Dd has had so many courses of anti b's since jan I don't want her to have some uneceesarily. The stomach pain was round her belly button & the nurse said that points to general unwellness rather than a specific problem. Took her into school late, spoke to the head who will keep an eye on her. We have a gp's appointment on wed & then a meeting with head & dd's teacher next mon. How's your dd doingMrs Lego?

My dd is full of cold at the moment, still got tummy ache and now saying her eyes hurt, so we are off to the opticians next.

Hope your dd can avoid the anti-b's this time.

Oh dear, hope she gets on ok. My dd has been complaining of headache & her eyes being sensitive to light mind you dd2 has got a cold so wondering if it's sinus pain heralding the start of a cold.

If she is persistently ill you need to get a referral to children's medicine. Your GP sounds as useful as mine was with my DD.

I got sick of being messed around by my GP and went to A&E with her. You know your child; if they are unwell and you've tried Dr several times to no avail, take matters into your own hands.

I, unfortunately, am one of the horror stories you hear about (it was something bad). However, if I hadn't trusted my instincts, my DD could have been much further along with her illness.

Kinky - sorry to hear your experience. She is persistently ill but has periods when she is very active, jumping about, running etc although to me even when she's well her eyes don't have the normal spark. We & dp are taking her to the gp on wed along with a long list of recurrent symptoms, fingers crossed it goes better than last time. Given that kids can't vocalise how they are feeling you'd think they'd be keen to rule things out sooner wouldn't you!

Hi round about,

we have been in exactly the same position as you since November with Ds. It was only after we went back to the 6th G.P and demanded a referral to a private hosp with Ds that they decided to do an xray to shut us up. Ds had collapsed lungs (secondary infection) and has now been diagnosed with EBV (glandular fever).
Absolute nightmare watching him unable to move somedays, so painfully tired and just generally ill all of the time. He stopped eating and now weighs 30lbs. He is 4. The G.Ps were not interested neither was our local hospital who refused to see him twice over the last 7 months.

Keep pushing for you DD as Ds symptoms sound just like your DDs, we thought he was picking up then boom back to square one.

Our G.P didnt tell us Ds had GF as they hadnt read his results properly. I dont think they understood what Epstein Barr Virus was It was only when we saw the specialist who went through his results that she asked if we were aware of the GF

Have you seen the blood results yourself? I'd ask for a copy like we did.

Ds has been so poorly they have just done tests to rule out leukemia and lymphoma which have thankfully come back clear. I had no idea glandular fever could make a child so very poorly.

Goodluck and i hope you get some answers.

Thanks tooty how awful for your ds, I remember reading your thread & feeling so sorry for you all. Your ds sounds much more poorly than my dd has been so my heart goes out to you both. Dd seems a bit brighter today, she woke up complaining of stomach ache but no puffiness round her neck or eyes so has gone off to school a bit happier. I just can't believe what a difference it's made to her, I just want my old dd back.

My DD, 3, sounds similar. We're finally doing the tests this week to rule out anything scary - cancers. I'm very scared. :(

I'm probably ignorant- I hadn't realised before it could be anything worse than glandular fever but we saw a different gp on Monday. Now we have a week and a half to wait for an appointment for blood tests. It seems very long to wait.

kickingk - good luck with the tests, it is a long wait. How long has your dd been poorly? So many doctors have told me there have been some very strange long running viruses around which I know there is but when they effect children it just seems so much worse. I think I've been a bit ignorant of a lot really, firstly didn't realise that if it is a virus it could go on for such a long time & have such an effect & then also that there are scary things too. Unmumsnet hugs to you x

Thanks roundabout, I should have said I hope your DD feels better soon too. Sorry, I was being self centred!
I did look into private blood tests today but it'd be hundreds of pounds and I'm not sure if I'm just being silly if the GP didn't think it needed to be rushed.

It's been since before Christmas she's been unwell, but I suppose at first you just naturally think it's a virus, oh dear another virus, oh this virus is hanging around for a long time...

I'd second getting bloods redone. I was ill for ages as a child (tonsillitus, virus etc.) and got a negative result for glandular fever. As an adult I had a complete virus workup and it showed that I'd had glandular fever previously.

Apparently a false neg. is not that uncommon.

kickingk - not being self centred at all - hope your dd picks up soon & the results are ok.
gracie - to me it does sound like gf, have got the gp later but am sure as ever they will be reluctant to actually give an explanation/diagnosis apart from the endless "viral infection" explanation.
Am actually a bit nervous about the gp appointment not in case he says it's anything bad although obviously I don't want that, more nervous because I just feel he will say it's nothing, just a virus. I want my old dd back, one who is fun to be around & has a sparkle in her eye & a lovely smile that lights up her face.

Sorry to bump in but I'm hugely relieved to have come across this thread. My dd (9) has been suffering from many of the symptoms described; spells of feeling sick, stomach ache, swollen glands, lethargy, fever for the past few months. She looks generally unwell and I've had many comments about the dark circles around her eyes "she should go to bed earlier, you know" grrrrr. She had blood test recently for hyperthyroidism, as I was diagnosed pre-teens but that came back clear. Been to GP on numerous occasions but always told its a virus, very common in children... feel like I'm being humoured and don't want dd to through another blood test if not unusual for gf neg result. Been giving paracetomol for gladular pain and fever but don't want this to be a long term solution. As there's no specific symptoms ie a bit of everything, are there any child friendly supplements which could help her along?

Hi trell sorry your dd is struggling too but it's reassurring to know it's not just us! My dd has been taking a general multivit, I did try with a tonic but it tasted strange due to the iron & to be honest she didn't seem to have improved any so I gave up after she's finished the bottle. I have bought some sambucol with added zinc for her to try, I know she likes that taste of that as she finished off the end of my bottle so am hoping that will help. My dd is so awkward regarding tastes of medicines sometimes I feel it's not worth the stress caused but now thinking about it of course it is!

Hi roundabout. Thank you. I have seen sambucol on the shelves but there's so much on the market, maybe it is just trial and error (especially if they taste gross). A friend suggested vit B12 as dd gets lots of mouth ulcers too (poor lamb) so maybe a multivitamin would be a good start. Just rang dh to tell him about the gf find - he wants to know where to get the miracle cure from!

Well I'm completely fed up, as anticipated the GP visit was a waste of time. They tested for GF, white cells (leukaemia) & something else & were all negative. Gp's attitude is that she def doesn't have gf & I had the "the average child has 12 viruses every year" speech so he reckons she's just been unlucky & had lots of viruses one after another. Pretty much every week since beg Jan she has been ill, surely she can't have had a virus every week all year long. We asked if he write a note for school which didn't go down very well with him, he said they would have to pay & even then wouldn't know what to put on it other than various viruses so he suggested a list of her appointments so far this year as proof she's just not been kept at home unenecassrily. I asked about allergies & he was just very vague & said it could possibly be but can't test for them. He kept asking about whether she was happy at home/school if we had marital problems etc etc. When I asked why her face & eyes kept puffing up if it was all different viruses he couldn't give me an answer. So all in all very peed off.

bump :(