To take 16mo to A&E? In need of a hand hold …

[SingSweetNightingale]

Evening all,

I’m all over the place so forgive me for the the rush of information.
My 16mo has been ill since September, ever since beginning nursery. Virus after virus which I know is normal due to picking up lots of bugs from other children. She always has swollen glands which I’ve brought to the GPs attention each visit and have always been told they’re normal, not too big etc.

Last time DD was ill was beginning of December. Usual swollen glands and I was told to bring her back after Christmas if they don’t go down. She was given antibiotics for the first time at this appointment.

Fast forward to today and I realise the gland on the left side of her neck is visibly protruding. I’m an anxious person so I immediately called the doctor who asked me to go down this afternoon.
I honestly thought I would be told that yet again it was all normal but no… the GP seemed very concerned as the gland is about 1cm over what is regarded ‘normal’. DD is very small for her age so it appears huge to even look at.
Other than the gland, DD has very few other symptoms other than appearing tired and pale some of the time.

I was told by the GP that she needed an urgent referral and leukaemia and lymphoma can present in this way. Cue me having an absolute emotional breakdown in the doctors surgery.
I asked if anything can be done sooner than 2 weeks but apparently not unless she begins to show more symptoms.

AIBU to take her to A&E? I want a paediatrician to look at her NOW and tell me if anything is concerning. I don’t want to wait 2 weeks in absolute turmoil over the possibility something could be seriously wrong.

Any insights would be amazing or similar experiences. I’m an absolute wreck

Your GP can actually ring the paediatrician at your local hospital, tell them the medical history and ask them to see your daughter today.
My daughter was ill over about 6 weeks when she was 2. When I took her to the GP for the 3rd time they suggested a paediatric referral. I asked how long it would take and they said they didn't know. I said I was not prepared to wait and I wanted to go that day. The GP rang the paediatric team and I went straight there. She was assessed in the paediatric ward. She had a life threatening illness.
If I were you I would make another appointment with the GP and ask for a referral straight to the hospital. If they refused I would take her to a and e.

Honestly I think I'd just go to a&e. I know it's technically not what they are there for. However if it gets dd seen by a paediatrician who can see her and maybe advise and put ur mind are rest. They might even think it something else completely.

Take plenty drinks and snacks incase ur waiting a while. Last time I went to a&e with my dd I had called 111 and they told me to there and have given them an update before I arrived. There was not a single person waiting and we got taken in within 5mins.

@AxolotlEars

Your GP can actually ring the paediatrician at your local hospital, tell them the medical history and ask them to see your daughter today. My daughter was ill over about 6 weeks when she was 2. When I took her to the GP for the 3rd time they suggested a paediatric referral. I asked how long it would take and they said they didn't know. I said I was not prepared to wait and I wanted to go that day. The GP rang the paediatric team and I went straight there. She was assessed in the paediatric ward. She had a life threatening illness. If I were you I would make another appointment with the GP and ask for a referral straight to the hospital. If they refused I would take her to a and e.

This.

If your GP suspects your child may have leukaemia, they should have PHONED the paediatric department of the hospital straight away, for an urgent assessment. I would recommend calling the GP surgery back and ask why, for a suspected child leukaemia/lymphoma case, this hasn't been done. The paed assessment unit will most likely ask you to bring her in straight away for assessment and blood tests.
It's nothing to do with A and E though.
Good luck

Last time I went to a&e with my dd I had called 111 and they told me to there and have given them an update before I arrived. There was not a single person waiting and we got taken in within 5mins.

That's not the picture in most places. When I pay went to A&E it was a 4hr wait for a potentially serious had injury, and there was a woman there who had easier for 8hrs with a newborn baby who had an episode of going blue which she got blue lighten in for. Most of the adults and children were waiting many hours.

That was before the Omicron wave which means that most hospitals are horrendously busy, with lots of staff absences.

As you've said yourself, this isn't what A&E is for.

The OP is 3 days into the 14 day maximum. Its likely she'll get a cancellation, and pretty unlikely that A&E would do anything given the appropriate referral had been made. There are also so many ill prior and bugs in A&E that if it was acting like leukemia, it would be the worst place to take her.

Its horrible, but if I be were the OP, I'd just yet as much as possible to take my mind off things, perhaps nag for a cancellation etc, but unless my child became actuator unwell, I'd wait for the appropriate appointment, which will hopefully come through within days.

It must be so frustrating to wait even though it’s an objectively short time.

When you ring to chase tomorrow mention that the referral was made under the two week wait pathway and the receptionists will understand your urgency.

So many autocorrect fails. But you get the gist

My DD had to have a specialist pead nurse take her bloody when she was 2, it has to come out of their hand and is not a standard or straightforward thing. So what the GP has told you on that front is true.

I would go back and ask for your GP to phone a pead consultant, and ask to be seen urgently.

When DD needed blood tests recently, a nurse at our surgery printed out the request form and I was able to book an appointment the same day at our hospital’s paediatric outpatients department where specially trained nurses take blood from young children.

You could phone your local hospital’s children’s outpatients and see if they would do this.

I understand why you are worried op but the people on this thread encouraging you to go to A&E are part of the reason the NHS is struggling! A&E is for ACCIDENTS AND EMERGENCIES, not for trying to skip the queue because you don't want to wait.

People saying don’t take are working under the assumption that the GP has followed correct procedures and done the correct referral. I work in this area and GPs make mistakes and I’ll informed decisions all the time with referrals.

@Notwithittoday

People saying don’t take are working under the assumption that the GP has followed correct procedures and done the correct referral. I work in this area and GPs make mistakes and I’ll informed decisions all the time with referrals.

Two weeks is a standard referral for suspected cancer so the GP clearly is doing their job properly.

They are so quick with babies and Children. If they were worried you'd be in sooner than two weeks.

DD was in the following day when they suspected a tumour.

Two weeks is a standard referral for suspected cancer so the GP clearly is doing their job properly.

Well, not for a child with suspected leukaemia it's not!

a child with suspected leukaemia it's not!

No. Its something they need to look into and because it's so serious, it needs checking out.

At no point did they say it was suspected leukemia. They also said that if the little girl was actually unwell, Jeff send her straight up.

There is a huge difference between a 2w referral to rule out something v nasty, and all systems go because it is suspected.

Noting what the worst case scenario is is very different from looking at what the most likely scenario is thankfully.

@Moonbabysmum

a child with suspected leukaemia it's not!

No. Its something they need to look into and because it's so serious, it needs checking out.

At no point did they say it was suspected leukemia. They also said that if the little girl was actually unwell, Jeff send her straight up.

There is a huge difference between a 2w referral to rule out something v nasty, and all systems go because it is suspected.

Noting what the worst case scenario is is very different from looking at what the most likely scenario is thankfully.

Yes, I understand the difference, however I'm pointing out that suspicion of leukaemia in a very young child should have a very low threshold for VERY urgent referral, hence why toddlers often are sent along to hospital the same day. A week or so can make a big difference with leukaemia.

@InSpaceNooneCanHearYouScream well a raised gland with no other illness or symptoms isnt really a massive red flag! The referral is probably just being ultra careful.

Yes, and given the doctor clearly would under some circumstances refer straight up, but in this case felt comfortable making the referral instead, their professional judgment is that they aren't worried enough to warrant sending stage up.

The referral has been made, the appointment will be in the not too distant future. The little girl is well in herself.

A&E is not a shortcut because the GP isn't acting quickly enough. Its also not a second opinion because people don't trust GPs. No wonder they are so busy.

And even if they did see her, the appropriate referral had already been made.

Its unnecessary, potentially risky for her if it is leukemia, and makes the wait longer for everyone else, including people that really do need to be there.

I can understand the urge as much as any other parent, but it's not the right avenue. Its like trading her to maternity because they can take bloods there - just because they can theoretically do it doesn't mean it's the appropriate place or that they will. Its not an accident or an emergency.

@SingSweetNightingale what are you doing to address your anxiety? I have a poorly 15yo on three sides who we went through exactly the same with, and she now it's still extremely pale, and prone to everything. Just how she is.

As you say yourself Dd is at nursery and is fine other than pale, does that sound to you like someone who use urgently unwell and can't wait 2 weeks? A&E would be appropriate if she was really unwell as well as being pale with a lump, and you would be sent straight there if there was a chance she was in imminent danger.

You cannot continue, however, with this level of anxiety. Can you self refer for talking therapy where you are?

I really recommend you do if possible as it's really not great for a child to grow up with a parent with health anxiety.

[quote wanttomarryamillionaire]@InSpaceNooneCanHearYouScream well a raised gland with no other illness or symptoms isnt really a massive red flag! The referral is probably just being ultra careful. [/quote]
No other symptoms apart from being excessively pale with repeated infections since September you mean?

Op, of course a children's specialist phlebotomist will be in a kids dept. Our kids hostel has an entire team of them them all work together in one room. It's absolutely typical for there to be 3-5 of them ash dressed up and with toys etc in the special little room. They blow bubbles, sing and distract the kids as much as possible so at to not traumatise them. They really ARE the experts in what they do and you need to wait for them. If your child needed to have blood drawn as an urgent thing due to accident/trauma then I imagine it would be quite distressing for them with a standard nurse/dr needing to restrain them with your help.

The fear you feel is understandable but realistically your child just has had a string of nasty bugs. It's no reason to randomly turn up at a and e and expect answers.... if everybody that had "health anxiety" did that the nhs would crumble in days. She will be seen very quickly, just try to put out out of your mind for a few days .

@notamilf

I would definitely take to A and E OP, I've taken all 3 of mine for various things (and always ended up being nothing serious, one time was a rash, another was a fall out of bed, and another time was croup but I thought the worst as a mum) but it gave me peace of mind and I would have been able to sleep if I hadn't got a professional opinion. I'm not sure about every hospital bit my local A and E department has a completely separate area for children so you will be seen quickly xx

Well its nice to know that you " got peace of mind" meanwhile some child who really was very poorly was left waiting and the staff were even more run off their feet just so you could get peace of mind.

@InSpaceNooneCanHearYouScream No other significant symptoms. Eating and drinking normally, no constant temperature, not listless or unresponsive. All the above would have triggered an immediate response.

@InSpaceNooneCanHearYouScream Also most small children in nursery/primary school catch repeated infections during the autumn/winter months, they are mixing daily with lots of other small children. As we all know small kids are major germ spreaders.

I was told that a normal phlebotomist wouldn’t be able to draw blood from a 16mo. It needs to be a consultant apparently or someone specially trained. I don’t know if that type of person exists in childrens a&e.

Yes, there will be a paediatrician or paediatric nurse who can take blood in a children's A&E, if you have one. You shouldn't go to A&E but I wouldn't blame you...

My DS had similar as a child and a protruding lymph node on his neck about the size of a large pea that came up during an infection and stayed that way until he was about 8 when it just went away. He's nearly 23 now and I can't remember exactly what it was he had a lot of minor medical issues growing up but it was something ENT related.

Hi @SingSweetNightingale I could have written your post two years since, although my daughter was 7 so not as little as yours. She had a large swelling under her chin and large protruding glands in her neck and groin. GP also said the word "leukaemia" and I like you fell to pieces. My mum was bobbing around on a cruise ship in the Indian Ocean stuck due to Covid lockdown so I couldn't get hold of her. I felt so alone and like you my gut was A&E. However, what your GP is telling you is right and you do need to wait for the referral which will come before you know it, although I can totally relate to the turmoil. I even spent hours searching the internet for private phlebotomist, but there aren't any who would do them on a child for suspected cancer. I've never needed my mum as much...and I'm 37 not 7 lol.
BUT to reassure you, despite showing some of the classical symptoms of leukaemia her blood ruled that out. What it did show was chronic anaemia which explained her constant tiredness and feeling unwell. And the lumps were just glands. Even now when she's poorly the same happens, and they're actually a good indication of when she's coming down with something as I can see them.
So I know you're driving yourself insane, and it's totally understandable. But fingers crossed there's another explanation for what's going on. Keep being strong OP.