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Original poster

My child has been sick a year now

92 replies

Freshmind001 · 19/11/2022 20:29

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 ?

OP posts:
Lemonademoney · 22/11/2022 14:24

my Ds has just been referred for more bloods as on top of his post viral whatever it is as he is now losing weight 😩 also waiting on a dietician referral to come through. It appears his year of illness is still far from over

PeppermintChoc · 22/11/2022 14:54

If you can please go private OP. This sounds so distressing for you all.

Original poster
Freshmind001 · 23/11/2022 07:03

ChristmasisRuined · 22/11/2022 11:49

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 Flowers

Someone else mentioned a similar experience above and I can't get it out my head now which is why I probably pushed on those bloods which they won't bloody give in to! A lot of symptoms for that she actually has but then again it could be related to other stuff also. I have already reached out regarding private health care so will get her checked this way

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:04

Bergmum · 22/11/2022 11:58

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 agree 100% and I don't understand why they don't do it, maybe funding issue ? I was quite angry at the way the doctor was like she's fine just a viral like no she is clearly not fine so no need for bloods! At what point do they even consider bloods ?

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:08

Jaybird43 · 22/11/2022 13:02

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

Did the GP ever offer bloods ? I am thinking to just skip GP and go straight A&E. Last time we went her fever kept dropping and rising and her heart rate was a little high + all the other symptoms she had. She definitely had tonsillitis at that time so that's been treated but she's still getting a fever and still coughing like crazy. She may have one good day and want to tell me it's just viral and their excuse for antibiotics not working is apparently now it's a 'viral' after I got told at A&E most likely bacterial. Did you ask for bloods or did they offer themselves ?

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:10

Lemonademoney · 22/11/2022 14:24

my Ds has just been referred for more bloods as on top of his post viral whatever it is as he is now losing weight 😩 also waiting on a dietician referral to come through. It appears his year of illness is still far from over

Oh poor little bub 😩 so your child has a viral & they are offering bloods post that ? My GP tried to say it's viral & because of that she doesn't need bloods even though it's not viral and it's bacterial. My daughter has also very visibly lost weight and she tries to tell me her weight is normal like no I'm telling you she's lost weight, even her face looks more pale

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:11

PeppermintChoc · 22/11/2022 14:54

If you can please go private OP. This sounds so distressing for you all.

I have already made phone calls and getting a plan sorted for her. However, they said a GP will still need to make the referral 😒 but I can also pay an up front cost for a consultation for her so might do that

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:13

BluOcty · 22/11/2022 07:52

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.

The first thing doc said when I walked in was 'may have to rush as we only get no more than 15 min per patient' so the whole thing very felt rushed and the more I was talking she was trying to clearly get me out because she called next patient in within seconds.

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:18

Igotthegoose · 22/11/2022 11:43

@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

Tbh I never even considered carbon monoxide as a potential threat but looking at the symptoms she doesn't fit into a lot of it.

I am sorry your DD is also suffering :(
What have they said so far for you ? My DD is the same and with the weight my GP tried to say she's fine but she has visibly lost weight and others have commented also. She's also quite pale and as the Paediatrician put it 'she looks tired'. I really do think a simply blood test will rule out a lot instead of pumping meds in her and making her suffer for a long time. It's almost like they want our children to be at the very end of their tolerance before they take them serious. More needs to be done !

OP posts:
Original poster
Freshmind001 · 23/11/2022 07:21

Igotthegoose · 22/11/2022 11:46

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 honestly have the upmost respect for doctors & the NHS but over the years it really is just getting worse and worse. My doc was clearly rushing through our apt and done some quick ops and wouldn't even let me finish with discussing the issue without her interrupting me and saying kids get sick 6-8 times a year and it's a viral infection coming and going and she's totally fine! I don't think she cared about what I had to say tbh.

If you don't mind sharing, what private healthcare did you go to ? I tried BUPA but I'm going to try my works one also and see what they say

OP posts:
NotMyselfWithoutCoffee · 23/11/2022 07:41

My sister had leukemia and my mum was constantly fobbed off even though she was always poorly and bruising very easily is a sign as well.
Definitely worth getting bloods done I think to rule anything out?

Ummmmmbrella · 23/11/2022 07:41

Have a look for any relative NICE guidance that they should be adhering to www.nice.org.uk/guidance/population-groups/children-and-young-people

also ask for complaints procedure and get the ball rolling.

involve practice manager.

Nishky32 · 23/11/2022 07:46

Lemonademoney · 19/11/2022 21:09

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.

I came on here to mention post viral syndrome- my ds had this. I paid for private consultation when he was discharged from NHS who refused to do tests-nothing was found but both doctors concluded post viral- he gradually improved

Nishky32 · 23/11/2022 07:53

The NHS doctor refused bloods and X-ray on the basis that it would distress a 3 year old. The private doctor ordered them, ds bloody loved all the attention- the nurses were brilliant with him

Caramac555 · 23/11/2022 07:57

Years ago I had something similar with my 6 year old. It was diagnosed as glandular fever eventually.

I think the poster who recommended a private paediatrician is spot on. No good doctor is going to get offended if you say you need a second opinion and review of her medical history for peace of mind.

ittakes2 · 23/11/2022 08:02

She’s had too many antibiotics - my son had over 30 x over 40 degree temps and they said his autoimmune system was being triggered.
they prescribed him vsl3 to build friendly bacteria up in her stomach.

Hollyhead · 23/11/2022 08:03

I’m sorry OP but your GP sounds like an absolute disgrace. It’s patently obvious that a child with those symptoms needs a full set of bloods to rule things out. I hope you get some answers soon.

Morechocmorechoc · 23/11/2022 08:10

If she is physically sick too then maybe add endoscopy to the list. Full bloods would usually show sign of infection and check platelet count for more sinister things. Are tonsils still swollen? Maybe they need to be removed as well. Can you request ent referal on fast track.

anyolddinosaur · 23/11/2022 08:16

Children with stomach pain and losing weight need to have a blood test for coeliac disease. Children who appear to have a problem with dairy may have coeliac disease and when gluten is removed from the diet and their gut recovers be able to tolerate dairy again. If blood is negative I'd take them off gluten for 4 weeks anyway, cant do that before the test..

Antibiotics destroy healthy bacteria in the gut. Any child who has a lot of antibiotics also needs pre or probiotics.

I dont think coeliac disease could cause the fever directly but might have an impact by damaging their immune response, so more infections.

Original poster
Freshmind001 · 23/11/2022 08:24

NotMyselfWithoutCoffee · 23/11/2022 07:41

My sister had leukemia and my mum was constantly fobbed off even though she was always poorly and bruising very easily is a sign as well.
Definitely worth getting bloods done I think to rule anything out?

So sorry to hear about your sister!
This is really pushing me even more. She doesn't bruise (I think as much) but it's something I will keep a look out on

OP posts:
Original poster
Freshmind001 · 23/11/2022 08:27

Ummmmmbrella · 23/11/2022 07:41

Have a look for any relative NICE guidance that they should be adhering to www.nice.org.uk/guidance/population-groups/children-and-young-people

also ask for complaints procedure and get the ball rolling.

involve practice manager.

After basically refusing the need for bloods done despite me trying to give my reasoning she was suppose to take it up with the more senior doctors and call me back which she never did. Another reason I was just being rushed to leave.

OP posts:
Original poster
Freshmind001 · 23/11/2022 08:34

Morechocmorechoc · 23/11/2022 08:10

If she is physically sick too then maybe add endoscopy to the list. Full bloods would usually show sign of infection and check platelet count for more sinister things. Are tonsils still swollen? Maybe they need to be removed as well. Can you request ent referal on fast track.

Yes she has been physically sick also, actually remember one occasion her throwing up pure neon green gunk. They did a x ray at the hospital and said she had a lot of feces on one side so I got her some treatment for possible constipation as well as changing her diet and her bowel movement has been absolutely fine and she's still aching in pain from her tummy so she definitely need further tests in that.

Last she was seen her tonsil has 1 single spot with puss but she doesn't have that anymore but they still look a little red ti me.

OP posts:
Original poster
Freshmind001 · 23/11/2022 08:38

Hollyhead · 23/11/2022 08:03

I’m sorry OP but your GP sounds like an absolute disgrace. It’s patently obvious that a child with those symptoms needs a full set of bloods to rule things out. I hope you get some answers soon.

Couldn't agree more. The doc was like she's absolutely fine, if symptoms persist again come back. I was like don't worry, I will probably be back again in the new few days. Checked her temp this morning and she has a low grade fever again which I know will get higher. Her ears have started hurting also. It seems at each new symptom, they put the blame on that and ignore all the other stuff she's having issues with

OP posts:
Original poster
Freshmind001 · 23/11/2022 08:40

ittakes2 · 23/11/2022 08:02

She’s had too many antibiotics - my son had over 30 x over 40 degree temps and they said his autoimmune system was being triggered.
they prescribed him vsl3 to build friendly bacteria up in her stomach.

That's crazy! I do wonder if the antibiotics is what causes all these problems also. A doctor one told my mum about me a kid to not give me anymore antibiotics because it's so damaging and could cause me to go deaf. Weird enough my daughters ears have all the sudden started to hurt she has triggering pain now. It might not be accurate info I am not sure but I definitely can't see the benefit long term

OP posts:
MumofCrohnie · 23/11/2022 08:47

My DD was sick for the best part of a year with a chronic cough, occasional vomiting out of nowhere and a low grade fever (always around 37.7, but spiking up to 39 and 40 for about 24 to 48 hours). She was pale, thin and had diarrhea. She used to get up to use the toilet midway through eating, and had very little appetite.

I took her to A and E twice and the GP twice. They did do a FBC which ruled out leukemia - which was my main fear.

Long story short - it was Crohn's disease. The chronic cough was reflux from the Crohn's in her stomach. The ulcers in her intestines triggered the fevers.

Has she had a calprotectin test? Not all crohnies have diarrhea. It depends where in their system the Crohn's is. It can occur anywhere from mouth to anus. My DD has it from stomach down. It's increasingly common in children, unfortunately. Worth ruling out I would say?