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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?
IrresponsiblyCertainAboutSexualDimorphism · 13/01/2024 19:21

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.

Do the OP the courtesy of reading her updates.

Nosleepforthismum · 13/01/2024 19:21

Thinking of you OP and your little boy. I’m sorry he’s so poorly, I’ve got everything crossed you can get a diagnosis for what’s going on and for him to get better soon. This thread is a stark reminder to trust our instincts as parents. You’re both in my thoughts tonight x

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.

Klcak · 13/01/2024 19:24

ImaniMumsnet · 13/01/2024 19:13

Hi everyone,

We have seen references to inappropriate posts being made here, please could they be reported to us?

What's probably needed is an MNHQ edit to the OP to say that the child is now in hospital so no further advice is needed.

Lbet · 13/01/2024 19:25

The post above is one of the most sensible post so far. Totally understand you being worried as I have been in your situation. However I would have this thread deleted or just don't come back onto it.

Most people on here are scaremongering you and seem to think they are experts on your child's symptoms, leave that to the professionals. Your child's symptoms could be something that can be sorted out with treatment.

I am so glad you have took up the courage to be your child's voice. For now don't even think about complaining to your GP for not taking you seriously, just concentrate on your child getting better.

Big hugs to you.

FuckOffTom · 13/01/2024 19:26

Really hope all is ok OP Flowers

Tinysoxxx · 13/01/2024 19:28

OP
Tips for hospital if you will be in a while:

  1. chargers for every phone/ipad
  2. Earphones that plug in with a wire - the nurses said to us that wireless ones can interfere with equipment sometimes and they are easier to find
  3. a stand for a phone/ipad
  4. get a relative to download films onto your appliances from IPlayer/Netflix etc as the hospital wifi is patchy
  5. Parents don’t get food so anything you can pour hot water into to make a meal - porridge pots or rice pots are useful for people to bring as you won’t want to be away from the bed for too long.
  6. Just change once a day into fresh comfy ‘day’ clothes (don’t bother with pyjamas etc) as drs will be coming round at all times and it’s annoying if you miss the round if you are waiting for the toilet room to change in.
  7. write your own observations down, names of drs, times and dates when tests happen. A pen and notepad is good for this, then you can take photos on your phone to duplicate copies.
  8. If you have Amazon they often have lockers near the hospital they can drop stuff off to.
AliciaW010203 · 13/01/2024 19:29

Take him to A&E, I would rather they sent you home with nothing to worry about rather than it being something underlying especially if he's losing weight.

TheShellBeach · 13/01/2024 19:30

AliciaW010203 · 13/01/2024 19:29

Take him to A&E, I would rather they sent you home with nothing to worry about rather than it being something underlying especially if he's losing weight.

PLEASE RTFT!!!

MrsElijahMikaelson1 · 13/01/2024 19:33

Thinking of you and. Your boy OP

dunBle · 13/01/2024 19:35

@trombolese sorry to hear that your son is so poorly, but it shows that you were right to follow your instincts and take him in. Will be keeping my fingers crossed that it's something that isn't going to require a long hospital stay or long term treatment.

(And now, thanks to your username I have "Free From Desire" as an earworm😂)

Delaire13 · 13/01/2024 19:35

A & E and change your doctor's surgery , also if you feel your surgery was not treating your child properly then report them to the medical practitioner board. Also consider going private if you can afford it , to get tests and results much faster

dray9925 · 13/01/2024 19:35

Tinysoxxx · 13/01/2024 19:28

OP
Tips for hospital if you will be in a while:

  1. chargers for every phone/ipad
  2. Earphones that plug in with a wire - the nurses said to us that wireless ones can interfere with equipment sometimes and they are easier to find
  3. a stand for a phone/ipad
  4. get a relative to download films onto your appliances from IPlayer/Netflix etc as the hospital wifi is patchy
  5. Parents don’t get food so anything you can pour hot water into to make a meal - porridge pots or rice pots are useful for people to bring as you won’t want to be away from the bed for too long.
  6. Just change once a day into fresh comfy ‘day’ clothes (don’t bother with pyjamas etc) as drs will be coming round at all times and it’s annoying if you miss the round if you are waiting for the toilet room to change in.
  7. write your own observations down, names of drs, times and dates when tests happen. A pen and notepad is good for this, then you can take photos on your phone to duplicate copies.
  8. If you have Amazon they often have lockers near the hospital they can drop stuff off to.

Excellent idea and much more helpful than some of the previous posts!
Some of mine
-if able blankets and pillow cases from home not always allowed but when they are they really help!
-kindle app instead of books they do have some free to download but also a monthly subscription if funds allow for it!
-ask someone in your family to be the designated person for others to ask it's so overwhelming making all the calls yourself and bloody draining emotionally if you can just call one person and ask them to feed that information around!

  • a lot of hospitals have a a play team don't be afraid to ask for them when I was in certain wards they would happily block half an hour into their day to sit with my son while I showered!
  • if someone is bringing you anything up dry snacks and little treats for a pick me up when needed!
-don't be afraid to go back and ask questions when the doctors come round you can take notes but sometimes you misunderstand or forget to ask things and there is nothing wrong with asking one of the nurses to clarify something for you ! Really hope he is feeling better soon OP! Xx
Mulhollandmagoo · 13/01/2024 19:39

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.

No need!

TheShellBeach · 13/01/2024 19:40

Delaire13 · 13/01/2024 19:35

A & E and change your doctor's surgery , also if you feel your surgery was not treating your child properly then report them to the medical practitioner board. Also consider going private if you can afford it , to get tests and results much faster

She's already gone to A and E which you'd know if you RTFT!

Mombie87 · 13/01/2024 19:40

Thinking of you OP xx

Shaw1987 · 13/01/2024 19:51

Keeping you and your little man in our thoughts xxx

saraclara · 13/01/2024 19:53

ImaniMumsnet · 13/01/2024 19:13

Hi everyone,

We have seen references to inappropriate posts being made here, please could they be reported to us?

I already reported that this thread needs a banner above the OP to tell people to read the updates

MrsB2022 · 13/01/2024 19:53

Hope you get sorted

dray9925 · 13/01/2024 19:54

MrsB2022 · 13/01/2024 19:53

Hope you get sorted

Edited

Read the thread she has gone to a&e

TheShellBeach · 13/01/2024 19:56

MrsB2022 · 13/01/2024 19:53

Hope you get sorted

Edited

FGS RTFT

CluelessPepperoni · 13/01/2024 20:03

Klcak · 13/01/2024 19:24

What's probably needed is an MNHQ edit to the OP to say that the child is now in hospital so no further advice is needed.

Yeah, this would probably be a good idea. That and asking everyone to stop posting 'read the full thread' over and over again. The OP can ignore the posts that aren't relevant but the thread policing is tiresome.

Xmasinfrance · 13/01/2024 20:05

Sending best wishes to you and your boy, OP.

Georgina15 · 13/01/2024 20:09

Listen to your moma gut instinct. If you feel something isn't right and QOL is being impacted then ask your GP for a referral to a Gastroenterologist, ENT and a Dietician.
Has anyone suggested testing for Celiac Disease or Diabetes Type 1 (autoimmune)? We had very similar issues with our failure to thrive, emotional, ill, children and after a simple blood test for Celiac their Ttg and blood count antibodies tests showed CD so they went for biopsies which proved internal damage to their villi in their small intestines. Since then we've been gluten free and their health improved within days and weeks! One year later our other daughter developed Hypothyroidism which is another autoimmune disease as they can follow each other and are linked to inflammation in the body system. Definitely worth seeing a specialist and pushing to get more help if you feel something isn't right. Sending you lots of love and good luck. I hope your son feels better soon. 💞💔🙏

Maybelrose · 13/01/2024 20:14

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