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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?
trombolese · 16/01/2024 18:23

Hi everyone, I just wanted to come back and say a huge heartfelt thank you for all of your love, thoughts and support. It really does mean an awful lot.

In my quiet moments I’ve thought a little about what I would say on here as I didn’t think I would get this much of a response! However, I felt I couldn’t leave it.

I won’t disclose what my little one was diagnosed with as when I was trawling the internet for answers on what could possibly be wrong, actually, my health anxiety was absolutely out of control and I feel sometimes it doesn’t help to hear 100 different diagnoses/what it could be when you are in a similar situation etc. as it just adds fuel to the fire, especially if you’re a stage 5 worrier like me, although I clearly had every right to be worried. But what I will say is this, he had some bloods done nearly a year ago now which had clear evidence he was unwell and were markers as to what was eventually diagnosed when I took him in last week. These were never followed up. In fact, I was never even called back despite them being quite clearly on his medical records - he’s had several GP appointments, I called twice to chase these bloods and told they were fine, he’s even had surgery and consultants have seen his notes and never questioned it. We have had enough GP bashing on this thread already, including by me obviously! However, I feel so utterly appalled as these bloods could have saved us a year of wondering what the hell was going on with him and could have really potentially even prevented some of what we’re now going through. Anyway, my point is - if you are not happy with what you are being told or something doesn’t quite add up, don’t sit down about it. Keep pestering, keep advocating, keep going. I thought my sons problems were done to his tonsils being chronically infected, I thought I had advocated enough for him to be seen by a specialist after being fobbed off by several ENT consultants and it turns out I couldn’t have been further from that.

Big love to you all x

OP posts:
Stackarack · 16/01/2024 18:27

Hi OP. Good to hear from you. I am sorry to hear those bloods were never followed up it also relieved you do have a diagnosis now which hopefully means he’s being properly treated. Take care of yourself. When you are ready do raise what’s happened with your surgery. That can’t be allowed to happen again.

Freddiefan · 16/01/2024 18:29

I haven’t posted on your thread before but have been following. I’m so sorry that you have been let down but hope that everyone pulls out all the stops now and that your little one improves soon. Very best wishes.

fetchacloth · 16/01/2024 18:32

I'm so sorry you've been through all of that OP and as you say, it shouldn't have been necessary.
You should file an official complaint with your GP surgery. If this isn't followed up by them, you should complain to your local Health Trust.💐

CarrotsAndCheese · 16/01/2024 18:34

Thanks for the update, @trombolese .

Shocking that you've had such a poor experience over the last year, but I'm so glad you've now got a diagnosis for him and hopefully he can be treated successfully now.

It's sad but true that you have to keep questioning and advocating, when really you should be able to trust all of these professionals.

If you have the time and energy, please do complain, although I know that can be very hard when you're looking after a loved one who's unwell.

Best wishes and hope he is feeling much better soon x

BreatheAndFocus · 16/01/2024 18:37

Thank you for the update. I’ve been thinking about you and your little boy and hoping he was getting the treatment he needed and was ok. I’m sorry to hear that you and him were failed. That must be so frustrating and upsetting. You now know you were right and something was going on.

If you feel able, do complain. They should have a system to flag blood results properly.

Sending you a hug and a well done for persisting, and wishing your son good health xx

ChaosAndCrumbs · 16/01/2024 18:48

OP, you are absolutely right re. the importance of Advocating. Well done for getting your little boy the help he needed. I’m so sorry you both had to go through this and it wasn’t followed up earlier. Really hope he recovers well. xxx

BoilingHotand50something · 16/01/2024 18:48

Bless you for coming back as this thread has gone a bit mad. So sorry to hear that your son could have been treated much earlier and potentially not be in the situation he is now. Thank goodness you followed your gut. I hope he is feeling better very soon and I hope you are doing ok.

RethinkingLife · 16/01/2024 19:00

Big love to you all

And to you and your DS. My best wishes and thoughts for you that the treatment plan is well defined and is as straightforward and effective as it can be within a short timescale so that your DS is recovers/feels better as soon as possible.

Cudz · 16/01/2024 19:17

So sorry to hear that vital signs have been missed at numerous stages OP I can't imagine what emotions you must be going through right now. I just pray now that they can get your son on the mend ASAP. Sending you both so many best wishes x

Nottogetapenny · 16/01/2024 19:20

Thank you for coming back to update. I am so sorry to hear that your little boy’s blood test done a year ago, has a significant effect to how he is today.
You must feel so upset and annoyed that this could have happened.
Hope your little boy has all the care and help he needs to be well.
Take care and look after yourself, you sound like an amazing mum. 🌸

Inyourwildestdreams · 16/01/2024 19:25

@trombolese Thank you for coming back to update OP. I know a lot of us have been thinking of you and your little one.
I’m so sorry that your family is going through this, and that you and your boy have been failed so badly.
Well done to you for pushing. It’s so easy to feel like you’re going crazy when the “professionals” are telling you things are fine.
I also completely agree with not sharing the diagnosis. As I’m sure you’ve experienced recently, the internet can be a scary place when you start googling symptoms etc.

We’ll be thinking of you and wishing you both all the best.

Clearinguptheclutter · 16/01/2024 19:28

Thank you for updating
that is really really bad. I’m sure it’s a symptom of the nhs just being massively under pressure but please do complain when you feel able, it’s just awful that your ds and wider family have suffered so much longer than necessary

I do hope the docs are doing all they can to put this right. All the best to you x

DanceMoveGrooveAndShoutIt · 16/01/2024 20:00

How completely galling, OP. Really hope things improve.

Silvers11 · 16/01/2024 20:07

@trombolese Thank you for taking the time to update us and I am so glad you now have a diagnosis and at least he will be properly treated now. Sounds serious, so I will still be thinking about you

I hope at some point you will complain about the GP treatment as that is shocking and as you say, if the bloods had been looked at properly at least some of what you are going through now could have probably been prevented. Take Care

Squirrelsbite · 16/01/2024 20:07

I have been thinking about you and your little lad
really hope he’s on the mend soon
love and luck xx

FrancisSeaton · 16/01/2024 20:09

When the time is right and you feel strong enough you can absolutely complain. It's not good enough . I really hope treatment is as kind as it can be on you all

dunBle · 16/01/2024 20:11

Thanks for updating @trombolese . I hope that the delays in getting a diagnosis won't have any long term detrimental impact, even if it has meant that your son has had to suffer unnecessarily for some time now. And I agree with everybody else, once he's better a complaint to the practice is absolutely warranted. Get well soon, Mini Trombolese.

Lbet · 16/01/2024 20:32

What a wonderful mother you are being the voice for your child.

I was in similar situation with my daughter when she was 12 years old. GP fobbing me off everyitme I took her in with different symptoms. He too ignored the signs in the blood test results on several occasions..
I won't say it was too late by the time my daughter got her diagnosis but she was extremely poorly by then and had suffeted with a lot of damage.
However with how far advanced medication and treatment has come on these days my daughter eventually did go into remission. That wasn't a cure but her condition can be maintained..

She is 18 now and doing brilliant. Really hoping this can be the same for your boy.

I wouldn't waste anytime even thinking about complaining to your GP right now, Use your time concentrating on your precious boy. The time will come as and when you feel ready to make a stand.

Sending you and your boy all the strength you need to get through this difficult time. Xxx

Sisterpita · 16/01/2024 20:34

Thank you for updating. Glad you are getting a diagnosis albeit 12 months later than it should be.

Doteycat · 16/01/2024 20:39

It's nobodys business what he was diagnosed with so don't u worry about that.
I am however very very glad u asked if u shld go to a and e and I'm v v glad u went.
I hope with all my heart he's ok.

wellhellohowstheweather · 16/01/2024 20:40

Oh love, I'm so sorry, that's so awful. I hope whatever it is can be easily treated. I'm so sorry you were so badly let down.

Vonesk · 16/01/2024 20:42

I've had some basic medical training in my job role.
'I know drinking like a fish' is a symptom of DIABETES.
So is : susceptibility to infection..

Pebbles1012 · 16/01/2024 21:14

Sending love and best wishes for your beautiful boy's speedy recovery. Take care and stay strong. Your little boy is so lucky to have you. X

Lougle · 16/01/2024 21:36

I'm glad you've finally got an answer. Hopefully you'll see a rapid improvement with the correct treatment.

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