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GP won’t see 4yo for 2 weeks [Title edit by MNHQ - Please read beyond the OP before responding]

573 replies

trombolese · 12/01/2024 12:03

Hi, just need to get an opinion on what people would do in my situation.

Some background on my 4yo - severe silent reflux from birth which meant awful awful sleep and feeding. This went undiagnosed for 7 months which then led mega tonsil problems, golf ball size which then caused severe obstructive sleep apnea. Tonsils out at 2.5. Grew back 5 months later to full size, if not bigger (didn’t think possible, consultant at Evelina said she’d never seen it happen that quickly) - constantly infected, had them out again at 3.5. Never weaned properly due to feeding issues, always bad with food. Quality of life crap due to tonsil problems. Since having them out it has only very mildly improved to be honest. He has also suffered with constipation the past year due to poor diet.

Since beginning of October he has had a fever at least once a week, sometimes explained, sometimes completely unexplained. The longest he has had fever for is 8 days with no other symptoms. GP not interested and said these things happen (we have 2 other kids…it doesn’t happen). So many lots of antibiotics, a couple of long lasting chest infections and since November an ear ache that hasn’t gone and he is still suffering with today. Yesterday he spiked another fever of 39, no other symptoms but sent home from nursery. He barely eats a thing, some days he will only eat 2 squares of toast. The rest of the day he drinks like a fish, just water other than 1 x cup of milk before bed and sometimes 1 x in the morning. He’s lost about 3kg so far. He’s so so unbelievably pale, puffy eyes and big bags under his eyes too. He’s recently taken to crying a lot. A lot, a lot. Over things very trivial to the average person but these crying episodes can last up to an hour. He’s extremely irritable and sad. He seemingly can’t walk longer than about 15 minutes without complaining his legs are hurting loads (to the point where he will just crawl along the floor instead if we let him!) and more recently he is waking in the night complaining of itching. His tiredness and lethargy some days is another level.

Seeing as this is his 10th fever in as many weeks (I am keeping a diary now) I contacted the GP with a massive list of his symptoms as I am now actually really concerned. They can’t see him for 2 weeks and have told me to “contact the HV” for advice in the meantime. What advice can they possibly give?! I am really concerned he is lacking something important in his diet or god forbid, something even worse.

AIBU to call 111? Do I take him to a&e?! This just seems crazy now. He has missed so much nursery and it just breaks my heart that his QOL is so shit.

OP posts:
Are your children’s vaccines up to date?
mauvish · 13/01/2024 21:57

sarahnurse · 13/01/2024 20:46

All Gps do Paediatric and A&E rotations.Lots of inaccurate info on this thread!

No they don't, and this is post adds to the inaccurate info.

(I'm a retired gp - retired early. I know about GP training!)

Also, can people please hold off on saying , "Ask for this, have you considered that" etc etc? The OP is in hospital with her LO, and I'm sure we all wish them both the very best. But you have to accept that in a paediatric setting, the doctors are going to know more than any kb warrior with the internet at their fingertips. Reaching a diagnosis - even knowing what tests to do to reach that diagnosis - is a lot more complex than using Dr Google, and involves not just reading lists of things but knowing the relevance of those lists and how to apply that knowledge. Google doesn't teach you that (and neither does knowing someone whose child once had a particular problem).

I'm sure I'm whistling into the wind by saying this, but it does irritate me.

OP, I'm still keeping everything crossed for your little one, but I know that, with a sick child, there will be many more calls on your time! So don't worry about updating, just know that there are lots of people wishing you well. x

Savedpassword · 13/01/2024 22:13

rosiejaune · 13/01/2024 21:24

Could be PFAPA or FMF? Though there are other causes of recurrent fever too (most are genetic).

What did you type into google to come up with that diagnosis?

Vonesk · 13/01/2024 22:21

It's called kicking the can down the road because there is no room at Hospital.
Example : If you was Nine months pregnant and suffering blurred vision and severe stomach pains, they would send you to the Eye Hospital ,it's that pathetic!!!!

Saltyswee · 13/01/2024 22:35

Hope all is okay

ThrivingNotDiving · 13/01/2024 22:37

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febbabies2023 · 13/01/2024 22:39

Been following the thread quietly whilst hoping for an update... hope you're both ok op

whatsitcalledwhen · 13/01/2024 22:46

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TheShellBeach · 13/01/2024 22:49

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ClaraMumsnet · 13/01/2024 23:03

Hello all,

We've moved this to Children's Health as it doesn't feel appropriate for AIBU given the updates.

Can we please ask that you bear in mind the disclaimer on this part of the forum, which says,

"Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional".

The OP is with healthcare professionals, so we don't feel it's helpful to speculate.

💐 OP, sending good wishes to you and your little boy.

Giveandtaketime · 13/01/2024 23:05

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MCCMK2014 · 13/01/2024 23:10

Sadly we resorted to £70 private GP appointments as our daughter sleep apnea was not being taken seriously enough. Private insurance can also be a good option. The nhs is shit and is being destroyed but your priority is your child not the politics

Gcsunnyside23 · 13/01/2024 23:26

KiPa · 13/01/2024 19:22

Just like to say GP receptionist's don't 'FOB' people off. They work according to the GP's instructions.

Not true, mine actually did fob me off as she couldn't be bothered to go find out alternative info and my midwife absolutely bollocked her as it meant i didn't get a much needed appointment that put me at a massive risk

GrandTheftWalrus · 13/01/2024 23:30

Hope you're okay OP. And your little one is getting the best help now xx

Cerealkiller4U · 14/01/2024 00:37

trombolese · 13/01/2024 07:56

Hi everyone, thank you so much for all of your responses and thoughts, it really means a lot. Didn’t want anyone to think I’ve abandoned the thread but I have quite a poorly little boy. I will update when I have the full picture and processed it a bit but it’s been a really long day and night. Xx

I’ve sent you a pm xx

Vonesk · 14/01/2024 00:41

This reply has been withdrawn

This message has been withdrawn at the poster's request

Cerealkiller4U · 14/01/2024 00:41

MCCMK2014 · 13/01/2024 23:10

Sadly we resorted to £70 private GP appointments as our daughter sleep apnea was not being taken seriously enough. Private insurance can also be a good option. The nhs is shit and is being destroyed but your priority is your child not the politics

My daughter has central sleep apnoea, I was lucky that they diagnosed her really young. I think she was about 18 months. I need to take her back because even though she’s 11 now, I’ve noticed she’s still doing it. She used to stop breathing over 100 times a night for sure. It’s nowhere near that now….

my youngest though got chicken pox and that started these horrific periodic fevers. Roughly every 20 days she get a fever. Had her tonsils out. Stopped it, but that entire process took years!!! I went private for that because even though she had over 50 hours of tonsillitis, not one doctor diagnosed it with her. Not once.

shocking

Tandora · 14/01/2024 04:51

Wishing your little one the very best OP x

Fuckitydoodah · 14/01/2024 07:50

Thinking of you and your darling boy OP. Sending love and strength your way.

lordloveadog · 14/01/2024 08:35

Thinking of you OP

AnneValentine · 14/01/2024 08:45

sarahnurse · 13/01/2024 20:46

All Gps do Paediatric and A&E rotations.Lots of inaccurate info on this thread!

No they don’t 😂

AnneValentine · 14/01/2024 08:48

Katpaedsnurse · 13/01/2024 19:15

I am a paediatric nurse, and all of this sounds very chronic . Unfortunately the way our NHS is set up we manage ongoing chronic (undiagnosed) conditions very poorly. I would suggest you get advice from a private paediatric ENT specialist. It sounds like he now had food aversions along with a other things - temperatures do just occur on kids that is actually true, but in this case with the history I'd be concerned about an underlying dormant infection somewhere within his ENT system... Would explain ears ( it's all connected).

You COULD take him the A&E and simply refuse to leave without having been seen by a paediatric consultant.. they will still need to refer you to the ENT team , for me the weight loss would be the part which should hopefully fast track you but if it were me I would seek private medical care.

This is probably the most alarming post on here. You’re advising the parent go on a costly goose chase.

BabbleBee · 14/01/2024 09:01

OP, I hope you manage to see all of the supportive posts here. I’ve been in a very similar position when my DD was 11. Repeated GP and OOH visits where I was constantly saying there’s something wrong, but always being told that I was overreacting and nothing was wrong. We ended up getting to see paeds via A&E and that doctor was incredible. Within a few hours we had a diagnosis and like you’ve described, I had a really quite poorly child.
I posted here and somehow the wave of support from people I’d never met and never would meet was comforting. I will keep you and your boy in my thoughts and hope for the best possible outcome, just as MN did for me a few years ago.

Illbefinejustbloodyfine · 14/01/2024 09:15

I hope DS is getting some treatment and you are ok@trombolese

Lougle · 14/01/2024 09:28

AnneValentine · 14/01/2024 08:48

This is probably the most alarming post on here. You’re advising the parent go on a costly goose chase.

This is why parents need face to face appointments with someone who can take a good history and work through all the elements.

What I see (former adult nurse) is an increasingly worried parent who has followed all advice given to them, with each ailment being treated in isolation and nobody stepping back and seeing the bigger picture of a child who is deteriorating and is not thriving.

@trombolese is now in a place where that is being done.

Fartooold · 14/01/2024 09:31

Is there no way of locking a thread unless it's the OP coming back to update, which would open it again?
I find it staggering how many totally ignorant and inappropriate posts are on here ( and yes, I'm including my own).
Best wishes OP ❤️

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