My child has been sick a year now

[Freshmind001]

My child has been sick coming to a year now and symptoms have not improved by antibiotics, nurofen or calpol. She's constantly got a very strong cough, CONSTANT fever and always complains tummy hurts, and has really cut back on meal times. I have been going back and forth to Gp's to hospitals and I feel like like I'm at wits end with it all.

I'm actually worried my child may have a more serious illness and it's not being picked up.

Does anyone have experience with something similar or could advise ?

I'm sure you're doing everything and this must be tricky to work out so no patronising is intended.

Have you taken her off dairy? I was sceptical about this cos everyone says it, took my son off milk and most dairy and all respiratory problems came good.
Laundry powder?
Household chemicals?
Bed linen?
This is random but is she close to a lot of electronic devices like wifi?
Has she had all childhood vaccinations?
When did the symptoms start?

Been tested for Chron's?

A recurrent fever and feeling better then worse again could be something post viral, which could include long Covid for example. The up and down nature of it all might fit. If it is long covid, that doesn’t show up on covid tests.

Just thinking of all the things likely to be asked, what about her bowels/stools? Any constipation or diarrhoea/abnormal colour of stools?

You say in your post she did have tonsillitis. Have you looked at her tonsils? Are they big and inflamed?

Recurrent tonsillitis is horrible ( had it as a kid about your dd's age) and had a tonsillectomy at 10.
The infection from the tonsils could be upsetting her digestion because it is full of pathogens.
Also the AB's will affect her digestion and nutrient absorption therefore making her feel lethargic and nauseated.
Have a look in her throat.

Also, you can get adenitis with chronic tonsillitis, which could account for the tummy pain. It is very common in children.

You really need to get full bloods taken. They can tell you so much. My son was I’ll for a period of time and it was diagnosed as systemic juvenile arthritis. One of its main symptoms is recurrent fevers. It would be very interesting to see your child’s inflammatory markers - CRP and ESR

Our friends little girl died of cancer which, had it been picked up earlier, would have stood a chance of being cured or at least treated.
Don’t be fobbed off- tell the Dr you want a full work up done on your daughter and everything ruled out.

DD was similar aged 3. She hadn't had a single ENT infection until this point but had had recurrent UTIs and eventually kidney surgery. The urinary side cleared up but her immune system was to pot. She then got repeated ear infections and tonsillitis. She had 15 ear infections and 7 bouts of tonsillitis in a year, each one lasting 10ish days. She would pick up slightly in between and then get ill again. She eventually got her tonsils out, adenoids out and grommets put in and she has been much better since. Tonsillitis always used to give her a v sore stomach and make her sick too.

Me too. I’m due back at the paediatrician this week with him and it’s on my list of things to discuss. It has been so sad to watch him struggle so much with life.

Thank you. I hope you get the answers you need. The blood tests aren’t pleasant, especially as he has now had three lots. I tend to take a bribe in my bag but the poor boy now hates the doctors

Thank you all for your great advise and sorry for anyone going through similar things, really hope all gets resolved. She had a temp of 41 last night but gave her some calpol and went back down. I am worried that she can't keep her temp down unless given meds and that's not good. I am going back to doctors tomorrow and will keep going until they do a thorough check. She's 6 years old and it's not right for her to be pumped up with meds and no answer to why she's been sick so long. Some people mentioned some valid points on here and wonder if her tonsillitis could be the case. My sister suffered really bad with tonsillitis growing up and I've had it I think 2-3 times in my whole life but I just didn't think tonsillitis would cause the other symptoms either. I may even possibly fly her over to my home country and get FULL checks on her for much cheaper costs but I haven't decided yet.

So tonsils, and her symptoms could be post viral mass cell activation which is also linked with high histamine and a reaction to the histamine increase can cause the chest and fever issues.

She has a few symptoms linked
Tomatoes
Chest
Fever
Tonsillitis

Does she have kidneys or bladder pain? They are also key areas that flare up.

It's a blood test, along with thyroid bloods to rule this out.

If it is mass cell or histamine then a low histamine diet for 4-5 weeks and then she can start to add items back in, and take an anti histamine.

I wouldn't hesitate in flying her for better medical care

I'm fuming! she's finished her course of antibiotics and her temp was still hitting 42. She woke up crying cause her ear was hurting despite being on antibiotics and taking nurofen and calpol. I took her doctors and her obs there were fine but despite me saying these symptoms are on going for a long time and although her temp may be ok right now, it will shoot up probably in the next hour. The doctor is like it's probably a lingering viral that can be on going and she's completely fine. I asked about doing full bloods and she said they don't do full bloods for kids and doesn't need one. Despite going back and forth she said she'll talk to her senior doctor but I know they are going to fob me off! What do I do ?! I said I refuse to keep pumping my child with meds she's clearly not ok ! Ah feel like crying right now

At this point I would just go down the private route. You shouldn't have to, but sometimes it is the only way.
I have chronic illness and I have had excellent care through the NHS, apart from one serious complication that I just could not navigate due to administrative problems. I became so ill that I just paid for a private consultation and got it sorted out.

Honestly I'd complain politely to the practice manager at this point, laying out what's been happening over the year and why you feel the current dismissal isn't appropriate. I do feel for GPS getting clobbered in this underfunded system but your DD really needs further investigations. I also would remortgage the house to go private if required.

@Freshmind001 I would just take her to A&E and tell them exactly what you've done with going to the GP and feeling fobbed off. Your poor DD is suffering! Just go and wait it out in A&E x

@Freshmind001 possibly?

with the carbon monoxide, I had a friend who’s daughter was constantly poorly and it went on for months, only to find they had a leak that went undetected. Mum in herself was fine and her other child, it was the youngest one that was affected she ended up hospitalised for it but they couldn’t figure out what was wrong with her for ages.

its frightening and it has made us super vigilant!

By the way my Dd has also been chronically ill and under investigations (only since the summer though, she also looks tired and pale and can’t do too much, all of a sudden she can’t tolerate the majority of food we give her) and I just wanted to say I feel your pain, it is agonising as a mother to experience and not being able to ‘fix’ them. All my prayers to the universe that you find some answers and our babies are quickly back to normal health

just seen your update Op. I’d take her to a and e, demand to see a paediatric and refuse to leave until they admit her for observation. Especially with that temp 😕

We also went private after being fobbed off, one doctor even said she pulled a muscle which was pure bs.

It is a shame isn’t it what our healthcare system has become

I'm honestly not trying to worry you here OP, I'm a parent too and my DD spent 6 months when she was 2, constantly ill so I know how worried you already are... I just have to ask, based on our experience, have they done the appropriate tests to rule out anything serious relating to her immune system, such as Leukaemia? I'm sure it won’t be anything as scary as that, but it's best to rule it out as low immunity is ONE of the (many) symptoms of Leukaemia

They should definitely do bloods. Ask for a different GP if your practice have more than one. My DD had bloods taken when she was three because I was concerned about a few months of viruses and listlessness among a few other concerns.
Bloods showed anaemia and some infection which we treated. They had also checked for coeliacs.
Blood tests are a basic easy diagnostic tool that should definitely be used.

I'm surprised they haven't done repeat bloods. When my son was experiencing a spate of non-blanching (petechial) rashes, he was perfectly fine in himself, except his large lymph nodes, and they always believed he had leukaemia. We would go to A&E and he would have to have a blood test, even if he had had one 2-3 weeks previously, because things can develop / show within that time frame.

@Freshmind001 please go back to A&E and say your DD needs to be seen now and you will not be fobbed off. Change your GP and stand your ground - you are your DD's only voice here x