Seriously worried about toddler

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My daughter is 2.5 years old. I posted on here a month ago saying she had an unexplained temperature... eventually after 2 GP visits a GP said her eardrum was red and prescribed amoxicillin, her ear cleared up and her temperature lowered slightly but remained around 37.5 within 3 days it’s went back up to 39+ and stayed there, at this point she started looking pale and was occasionally complaining of stomach pains. Needless to say I took her back to the GP who checked her urine (dipstick only) said that was clear, checked her over (ears, throat, tummy) evrything checked out except they recorded a high temp again, GP said next stage was to do a blood test so gave me a form. I went off and her temp went down again so I thought she was on the mend, a few days later it all starts up again, she woke up in the night crying her eyes out with a very high temp she looked so pale and by this point had lost a substantial amount of weight (mainly I assume due to the fact that she had barely eaten since all thisbstarted) so I drove her 45 minutes to the nearest hospital first thing to get her blood test, the GP didn’t tell me but apparently I needed to prebook this as it’s not straightforward with toddlers and their next appaoibtment was on 11th March. I pleaded with them at the children’s ward but they said no so in desperation I took her over to their a&e department. I asked for a blood test there and the paediatrician on call Just told reception no without even seeing her and put us on the GP out of ours list. He checked her over and said she sounded like she may have mild croup from the way she was breathing but otherwise was fine. I suggested anaemia, he said she would look even paler than this if she was anaemia, he suggested coeliacs but said it doesn’t quite fit and would need a blood test. He said although I’m saying she’s lost a lot of weight (which she seriously has, clothes I was about to take to the charity shop are now hanging off of her) she’s still within the range of her age. Since then she’s developed a slight night time cough over the past week, she just has bouts of coughing, several times now she’s coughed so hard she’s thrown up. In the day she’s all over the place one minute she’s got energy then she’s asking to go to bed. She still has a very high temperature especially at night. My other daughters had croup and this doesn’t have any of the telltale signs. Yesterday she woke up and had bloodshot eyes, I mean actually bloodshot with flecks of blood in them like some of the vessels had burst. The white of the eye was very red, again I called triage and visited the GP. I got a female GP this time who said she looked pale and suggested that her blood vessels in her eyes could possibly have burst from coughing but it was clearly concerning her, she wasn’t happy with her colouring or the fact that once again her temp was coming up at 38.8 in the office. She called the on call paediatrician and said my daughters colouring was off, her eyes were blood shot and she’d been to them several times in a one month period and each time she had a high fever, she said she wanted to see her blood test results so she could get an idea of what was going on. All the paediatrician could offer was to try and pull the blood test forward from the 11th March. So, it’s now 3:30am Saturday night and I’m in the spare bed with her now, as usual she’s woke up crying, saying her stomach hurts, coughing, high fever, blood red eyes and her weight... she’s barely eaten a thing today! (The GP said not to worry about the weight she will get it back on but how can I when she’s lost so much, they didn’t see her a month ago!). The last thing the GP said was if I haven’t heard from the hospital by next Wednesday to chase them... Wednesday?? So I’ve now got to carry on like this with her like this for another 4 days and even once the test is done we will have to wait for the results. I’ve never had to have a child’s blood test done before, I appreciate it’s harder than an adults and can see why no one wants to do it but to wait 3 weeks when she’s this unwell?? Surely GPs are only issuing these if they are absolutely necessary, god knows what can happen to a child in that time if it’s urgent. Her temp is 39.7 right now, she’s cuddled into me and she is SO poorly, from what I’ve read a temp this high could only be associated with her cough if it was a chest infection and everyone’s telling me her chest sounds fine, but she’s had all this before the cough anyway so it doesn’t add up. She’s spent most of today sleeping on the sofa. I’m getting so worried about her now and I feel like I’ve hit a brick wall, she’s not showing any signs of improving and doesn’t have much more weight to lose... if anyone’s reading this and has any ideas please help me.

Sounds like a chest xray would be a better starting point than bloods...

Ok, took her to a&e told them she was seriously unwell, naturally she was upbeat and interacting they said she was fine, put my foot down, they still said she was fine so again I left with no answers. No news from blood test this morning so I called another hospital and begged them to see her so they got us in and did the blood test today which might I add took a couple of minutes and was a bloody walk in the part so I’m fuming with the other doctors right now. Also took a wee sample into my GP surgery this morning and told them to do a culture on it. She is up and down still but still not good. One minute she’s okay and full of energy (seems like she does this on cue for the bloody doctors, when I called last week and asked for a doctor hey got a nurse to call me so I’m starting to think they’re fobbing me off as a neurotic mum) then the next minute she’s asking for bed. She’s also saying now that evrything is cold and she doesn’t want to be touched. She is STILL not eating and complaining of tummy pain, although I did notice today twice she did this and touched her chest so it could be sore from her cough (although she’s been complaining of this for longer than she’s had the cough!!).

The GP last week said her kids were rakes and she looks a good weight but she didn’t see her before this!! Ive managed to dig out a photo of her in the bath from Xmas and taken a new one today to arm myself with when I go back (which I’m sure I will) and the difference is shocking. She’s not my little girl at all right now but only me and the hubby seem to be able to see this...

Her eyes are still also red and she’s having awful night terrors and waking caked in sweat so I’m not sleeping either and starting to lose the plot. She had these with chicken pox so I think it’s something she gets when she’s ill?

Right now my biggest concern is her weight, she is showing less interest in food now than ever and she can not afford to lose anymore weight, I’m so worried about her body coping with whatever’s going on if she gets any weaker.

I’m at a total loss right now this is a bloody nightmare but I’m going to keep pushing with everyone and moving forward. If I have to take her back to a&e I will and I’ll keep going until someone listens.

Yes noco I am starting to wonder if she needs an X-ray now, what are my chances of getting her one when they all keep saying her lungs are clear?? What can I do? She keeps having coughing fits then crying after, I know here scary but I can’t help feeling they’re painful for her. How do I push for antibiotics when she sounds clear?!

Have they checked her blood pressure too? Just a thought as this could be making her tired and floppy if it's low, which it could be if she's not getting much salt or is dehydrated. Obviously other stuff going on too though. Good luck, I know how horrible it is to not have a diagnosis and get fobbed off. Could you try going to a private doctor and asking for a referral to a paediatrician?

It's very scary when they are ill and you don't know why. It's very likely she's had one virus after another though. One of my ds has just been so very poorly with a virus it went on for ten days, he hardly ate, his temp was high all the way through and he hardly moved from the settee. Can you temp your dd with some little bits of high calorie food? How about a boiled egg mashed up in a cup with lots of butter, or those little rolo desserts are very high calories for the size of them. Even a milkshake made with a spoon of ice cream. Sometimes they need the calories to have any energy, it's a vicious circle. But as for the calpol, it needs to be given 4x a day to work, when mine are poorly I give it every 6 hours.
I hope you get some answers soon!

You need to go to a children’s a and e if you ever take her to a and e.

I would get an emergency drs appointment tomorrow (ie same day) and write down all her symptoms and how long this has been going on for. Print off photos of her before she started losing weight. Write a diary of what she ate today compared to what she might normally have eaten.

Drs love to dismiss mummy’s - they just look st a child and if it’s playing right in front of them at that moment and not looking ill they don’t take it seriously. They also work on the assumption that rare illnesses will be rare - therefore a parent has to keep taking their child back multiple times and be very persistent if anything rare is wrong before it is diagnosed.

Good luck. Hope she’s ok.

Ps I had to refuse to leave a and e once and demanded to be admitted until they worked out what was wrong once when my child wasn’t diagnosed and I was repeatedly dismissed and fobbed off. Hope you don’t have to go to such extremes!

Ps video any visible sickness or night sweats you see at night

And video coughing fits if you can.

You will need someone with you.
Who cares what they think of you, go back to a and e and say you need a chest x ray, you are not happy and you are going to sit there in a deck chair until she gets it.
If they won't do it say ' i want it written on her notes that I am requesting a chest x ray now'

Ask for a medical review. Have your husband stand next to you. Bring the photos. Keep saying I AM NOT HAPPY

Good luck. I have been where you are and squared up to a very tall paediatrician who was trying to send my daughter home again.

I said no way would the head consultant allow her home.

He said 'well tough, he is gone home for the weekend and I said ' well ring him on the phone then' and he said ' I will NOT'
And i said well I will ring him myself then.
I heard him outside in the corridor making the call and she was kept in for 8 days. She had sepsis and pneumonia and barely made it.

If you think something is wrong, then get support and I hope you can get her better soon. You can do it. Good luck.

video everything you can , take the photos with you. Was it a children's emergency dept ? I would make a emergency appt go with a full written history of everything plus videos and photos to your Gp. They can admit you to paediatrics so push for that.I would try and see a different doctor if you can say you want second opinion. On a practical note when my son had a nasty virus he stopped eating and was very quiet ECT we took to doctors and they sent to hospital they pushed fluids , sugary fruit juice and food and it did help him. So if you can get juice, lollies, ECT into her it might help if she's not eating have they checked her blood sugars they could be lo

My other daughter is 5, I’ve been up all night with her with the worst cough she’s ever had it’s come out of no where and she’s crying it hurts so much and fever 39.8... that happened so fast, she was super healthy yesterday no cold nothing, I think they have the same thing, taking them to emergency GP appointment as soon as they open. Going to try to get a sputum sample out of my eldest and see if they’ll send if off

I know you are tired and stressed, your older daughter probably has a chest infection too. But your younger daughter has lost lots of weight and is very ill. They might say they both have the same virus.

Good luck. We are sick with chest infections here too.

When DS1 had pneumonia he had no cough or chestiness, just temperature spikes, lethargy and stomach hospital we took him to were excellent (not like the ones you've seen!) and were dithering between appendicitis and meningitis. While waiting to decide between the two, they decided to do a chest X-ray as a free slot came up and it was then that they could see it was pneumonia. I think his blood tests only showed there was an infection somewhere, no hint at what it was.

It was a long time ago but I remember the doctor saying it can present differently in children.

I hope you get an answer soon, OP.

The blood tests should show up an underlying infection which is what it sounds like she has - if it is that she will need a stronger set of antibiotics

My older daughter had no cough whatsoever when she had pneumonia, she only started coughing as it was going away.

I hope you get that chest x ray and some answers today. Good luck.

What a terrifying time for you. Hope you get answers asap.

Did you get anywhere with an emergency gp appointment today? So sorry your other daughter is now ill too, its so stressful when it's one never mind 2, you must be exhausted op, sending sympathy to you x

With the red eyes I'd be concerned about kawasaki disease? Please look into this it's not common but if its this it needs treatment immediately and her symptoms fit.

How are you all OP?

I also thought of Kawasaki. Please look at these symptoms. Especially red eyes. Lots of GP’s don’t think about it

So.. as per my last post.. I took both girls to back to back GP appointments last week, I asked for a very thorough check on the little one (because she cries so much at every appointment I feel that they don't check her over properly, she vomits every time they stick that wooden thing in her mouth to look at her throat and I have to pin her down for the ear test etc). When the GP looked in her throat he said it was extremely inflamed and prescribed her a week of cephalexin. My other daughter he said would be fine and nothing needed.

My initial thought was all these weeks maybe she's just been fighting this horrible throat infection that the very first set of antibiotics never fully cleared? 48 hours after her first antibiotic I thought she was improving, she'd started eating again and was running round happy, I thought we'd found the problem... then she started to go downhill again, temperature came back full whack, the irritability, the crying and the sensitivity to everything.

I had her bloods done at Addenbrokes hospital last Monday, I called everyday this week but still no results... I called the GP late Friday and explained she wasn't improving and she said she would call the hospital first thing Monday and get the results. Eventhough... I'm well aware these may well show nothing at all.

She wasn't too bad this morning but started going down hill at about 12... lost all her energy started crying, and then started screaming at anyone who touched her saying they were too cold, or saying lights are too bright or a room is too dark, these are things she's never done in her life. Her temperatures back up to 38.9. She's asleep now but before I put her down I changed her nappy and she just sobbed and said she didn't like it and don't touch me it's too cold, my tummy hurts, poo hurts, then I put her in her cot and she touched her head and said head hurts... I just cuddled her and sobbed with her. What is going on with my little girl?? I've taken her to a&e and I've lost count of her GP visits. She is so up and down that if I don't catch her in the moment she looks like a normal little girl but she's just not and this is what I'm telling everyone.

Kawasaki was well on my radar as its been going round facebook, I mentioned it when she got the red eyes but apart from the temperature she's not had any of the other symptoms, I'm watching her mouth, hands feet etc like a hawk and looking for rashes constantly.

This is so up and down... my plan of action now is to get blood results Monday come rain or shine then ask for a referral to a paediatrician, as soon as I get it I'm going to go private and get her seen as soon as possible, I'm assuming the process is the same for children as it is for adults?

This is really heartbreaking its been over a month now with the main symptom being recurring high temperatures, yes it maybe bad luck and she'd had back to back infections but that would amount to a lot of infections now.

Her coughs almost gone, her nose is running slightly but she's only got a couple of days left of antibiotic so I don't think thats going to fix this.

I feel like I'm pulling my hair out. Yes I can take her back to a&e but unfortunately they just see a little girl who's interacting well with a temperature and a (probably still) sore throat, they'll just send me away again.

I'm going to keep pushing but I'm running out of ideas...

btw I know the fear of bright lights is a symptom of meningitis but she's done this a few times over the past month she just suddenly becomes overly sensitive of everything when her temperature goes up.

hmm... just read up on glandular fever... thats definitely a possibility

Horrible for you OP. My nephew has night terrors which happen when he overheats. So not much of a consolation but they are probably a result of you DDs temp and not a separate symptom. Bring on those blood results.