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 ?

Have allergies and asthma been ruled out?

Yes. They first thought she may have asthma but based on tests they don't think so anymore and no allergies.

Long covid?

Nope. Tested her twice recently and negative.

Constant fever alone sounds very worrying. Has she been going to school at all? What have the doctors and hospital said?

Has she had bloods? To check everything.

Thyroid, histamine intolerance, asthma's, gastric GERD..

Any lung x-rays? Scans?

How old she?

Yes have experience of a child becoming sick and staying sick for a year.
When my Dad was around 1 she got a cold and that year she got more one after another.
Did was rushed to hospital twice, once as she was spaying blood as she breathed and once with periorbital cellulitis.
Was awful, draining and worrying.
Dd was faced with issue after issue, at one point she had an inhaler with a face mask we had to hold over her face (no asthma, doctors gave to help her chest).
Finally she was sent for evaluation for leukaemia.
Very grateful that she did not have leukaemia and after that year began to thrive again and now is pretty robust.

If you are worried may be time to push for full bloods to give you better understanding and peace of mind.
I feel for you, so awful to be worried and not have answers.

Yes! It will be a year in about two weeks time. My DS caught a cold this time last year that he couldn’t shift, then it went on to his chest and then one night he just couldn’t breathe - terrifying! His chest was up and down trying to suck air in and he ended up in hospital for five days, four of which were on oxygen then an inhaler to take home. They said he had a heavy cold coupled with a respiratory virus. He then got paler and thinner and more lethargic as winter progressed, I was back and forth to the doctors almost weekly at one point as he was so poorly. He had full bloods taken as he was falling asleep at school and was catching everything . He tested clear for most things but was very anaemic and had swollen lymph nodes in his groin and neck. It sounds like nothing when I write it but he was sleepwalking, soaking the bed with sweat nightly, was wheezing and mentally confused. His speech became jumbled and he was just glassy eyed for months. We were terrified and ended up requesting an MRI as his symptoms seemed so neurological. Anyway fast forward to now and he is finally under a paediatric consultant who is monitoring his lymph nodes, she has suggest post viral syndrome and thinks he is still fighting something as his nodes are still inflamed. Thankfully the MRI was clear and although he is still very thin (we cannot get weight on him) his energy levels are slowly improving as is his speech (although he still makes errors that he hasn’t previously). We have had to be so so patient though and have learnt to manage his tiredness and rest him a lot in between activities. I have learnt not to underestimate post viral fatigue, it is an illness in itself.

How worrying Lemondademoney. It made me think of PANDAS syndrome.

It's the fever that concerns me a lot. She's ended up missing school way too often because of her sickness and I feel bad but the school would end up sending her home anyway.

She has a paediatrician that supposedly was looking into potential asthma but they did that asthma test and think it's not asthma. We recently had to go A&E and they said she defo has tonsillitis as a first and they did a tummy scan but couldn't see anything alarming. Her antibiotics have been changed to treat her tonsillitis but it seems symptoms are still the same and it looks like it's not working again.

I think further tests need to be done so I'm thinking to go private at this point

She had bloods last year to check for allergies but no bloods for anything else. Last year they did a chest x-ray and said she had some fluid in her lungs but that I shouldn't be concerned. Since then she's been sick almost non stop with the same symptoms.

She's 6 years old

I am sorry your poor child had to experience all that! It's the worst thing seeing you child suffer and just not getting the answers. I am also getting sick and tired of being given antibiotics to just get me off their case. It's great you managed to get them to check that far for your child, I feel like they won't do those checks unless she's almost looks gone. My poor girl looks pale, tired has lost weight not eating much anymore. She has moments where she plays and she's fine but then quickly goes back to being sick :(

How scary to experience all that! I use to think maybe I was being annoying by going doctors so much and that they would judge me for saying she's been sick for so long. It's crazy to think how common it is actually. My daughter defo need full bloods but she's dead scared of needles so don't know how that will work but I am thinking to go private for her and just get everything checked to the T.

I am glad your child is improving and hope he makes full recovery soon!

Could she be exposed to, or ingesting something from a toy or something else in her environment? Have you checked whether there is anything in her bedroom like old paint or something similar?
I think you need to go onto your local teaching hospital's web page and look carefully at all the consultant paediatricians. Check their speciality and qualifications/experience. Then cross reference all that offer private appointments.
You want the best local one you can find that is employed by your local NHS and also does private practice.The reason for this is because they can move you to their NHS clinic for further investigations and treatment if they decide it is necessary.
Book a consultation asap. Borrow the money if you have to.
Gather every bit of information/blood results/medication records you have and put it all into a document in a time line. Write an accurate history of symptoms in the timeline. Take this with you to the appointment. One copy for you and one for the consultant.
I am so sorry you and your dd are going through this.

Does your house have a mould issue?

Good question.

This is very helpful, thank you! I will defo look into that and try and log everything.

You say allergies, has she been specifically tested for coeliac disease?

Nope. No mould issue in the house and have looked. I even brought those air purifier things to try and help with air quality but still no difference

No pets? Nobody smoking in the house?

Tbh the allergies one was more for certain foods as she use to get rashes from being tomato's as a infant but that stopped. I don't think they specifically tested against that but I will write that down and mention. I think at this stage best to check everything.

Carbon monoxide too, have you checked your detectors to see if they are working correctly?

We had a Bengal cat but he died long ago now so not related and smoke free house

The monitors working fine, they were checked recently. However, if that was wouldnt it affect all of us surely ?

Have you travelled abroad/somewhere where there might be parasites or other disease risk?