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

I had this fright after going to see a GP about my child losing his voice/croaky voice.
He also was having nosebleeds (with hay fever) and seemed tired, she decided because of those Symptoms to do a referral to hospital for ultrasound & the form on her computer screen said 'cancer screening'
I was thinking all sorts.

His glands were up but nothing else was wrong. (They thought from a old virus.)
No blood tests were needed because the ultrasound was conclusive.

Overthinking this, and guessing an outcome is not going to help.
I hope you have a better day tomorrow and wait for your referral.

I've been there with ds.

A few things:
Firstly don't go to A&E on a Friday night. Best case is they may do bloods, but unless it's got worse, or there's other new signs, the chances are they'll send you straight home.
And there's a chance of picking up other bugs (there's usually at least one person with a vomiting bug) which if there's potential things like leukaemia, you really don't want to risk.
You're also not going to get the consultant there on a Friday night. They'll be fraught and hectic with things that need treating immediately (been there, done that) and you may feel even more fobbed off.

Secondly: You should be seen sooner than 2 weeks. If they suspect cancer it's meant to be less than 2 weeks. With ds I knew they suspected it, then when his blood test came through it was 3 weeks away. I contacted the GP, made concerned noises, and GP bumped it up for me.

To take bloods in that age you do need someone qualified in doing bloods for paeds. Our GP was trained and one of the nurses was trained in that, however not all practices do have someone who can.
When ds was 10 weeks and needed a blood test we had to go to the local hospital, I think because he was so small. Don't try turning up and demanding because they may not be able to do it.

I've always rather been told what they are considering. When ds was bad the GP (who is lovely) said "Little bit worrying, I'll refer him for a blood test. Should be through in the next couple of days, definitely seen within a fortnight."
So I knew immediately he was thinking of cancer, probably leukaemia. I looked directly at him and said "leukaemia?" and he gave me his slightly exasperated look and said he didn't like to say that as it worried people, and it was only one possibility, he thought Glandular Fever was more likely. So I pointed out I could read the signs fairly well and I'd rather know the worst. We did know each other fairly well though.
FYI it wasn't either leukaemia or Glandular fever, and was put down to the generic post viral fatigue.

I know this is hard, but I would try to see this as GP being thorough in ruling something out rather than it being likely.

Repeated/ongoing infections can result in abnormally enlarged glands and they do go down when it/they finally resolve. This is from personal experience.

In the first lockdown DS had a swollen gland in his neck it was massive.. We took pictures for the gp then he saw DS face to face and referred him on the two week pathway we was seen within 2 days everything was fine DS just had a virus and it took months for his gland to go back to normal. Try not to worry swollen lymph nodes and gland are common when children have been ill. Hope you get your appointment for dd soon

I'm not sure A and E would be able to do anything for you unless she became unwell. I'd definitely ring the department your GP is referring you to and ask about cancellations.

I'm so sorry you're going through this and I honestly hope your dd is well xx

I totally understand how stressful this must be for you but there is a big chance it's absolutely nothing to worry about. My ds (about age 3 or 4 at the time) had a huge gland on one side of his neck, about the width of a 10p or bigger - it was clearly visible and you can see it in photos from back then. My brother who is the least observant and aware man even noticed it and mentioned it to my Mum to ask about it as he was concerned and didn't want to alarm me.

My ds had an ultrasound on his neck and it was normal and nothing to worry about (he's 14 now) it took years to disappear though.

Hope the ultrasound comes through quickly and it puts your mind at rest x

I’m sorry you’re going though this, extremely distressing. I don’t think A&E will be able to do anything, in fact they’ll probably just refer you back to the GP….My daughter had swollen lymph nodes in her early teens, bigger in one side, it was incredibly worrying but turned out to be either viral or vaccine related. I know it’s hard but try not to worry and in the meantime try to focus on making sure your daughter gets plenty of rest, healthy food etc

I’m really sorry you are going through this and I’m hoping that your little one is ok. It must be terrifying. Lymph nodes are buggers they are either absolutely nothing at all to worry about or cancer so there is no easier way to say your worried about one - doctors are supposed to be open and “inform” parents but I don’t think it is always the best option

A heads up about A and E staffing- The “paediatric doctors” in A and E are junior doctors- some will be training to be paediatric and some training to be GPs and some will be FY2s who have been qualified for just over a year. The are all less qualified than a GP. They will be supervised by a registrar and a consultant but the consultant is unlikely to be in the building this late and the reg may not have done oncology yet. The paediatric juniors have no more experience possibly less than a GP in Peads oncology - their very good at the acutely unwell child or the child with a broken bone but not oncology - you need a definitive answer and for that you need a paediatric oncologist. You probably also need an experienced sonographer to do the ultrasound if needed and they don’t usually work Friday evenings.

If your kid was bigger then you would be able to get a blood test which might help exclude(but not rule out) some cancers while you wait. But Under 2yrs is specialist paediatric phlebotomy usually and the wait for that is months often unfortunately so it will be quicker to go to the oncology apt. They will see and let you know in that apt and do the tests if needed.

Wishing you all the best - please avoid a and e as it’s the pits on a Friday. Calling the paediatric department on Monday and asking for any cancellations and letting them know you can attend at a moments notice (if you can) could also be helpful

I would definitely go to A&E. Dr's specialise in different areas.... GPS can be rusty!

I'm sorry you're so stressed, it's always so worrying.

Just because she is on the 2wp doesn't mean that she'll have to wait 2 weeks. I was seen in a couple of days, by the correct person. The GP had told me it was most likely cancer & to prepare myself because the operation on my face would scar badly because of where it was and the one on my arm would likely need some serious drugs!

So I was a bit of a mess.

Consultant gave me some cancer cream for my face & I had the one on my arm removed there & then (which was sent off for testing)
(Nothing further required). So a LOT of worry due to an over zealous GP, but it was all very quick.

I'd wait and hopefully you'll get an appointment quickly & it's all fine xx

Piggyk2 and accident and emergency docs specialise in accidents and emergencies - the op needs a paediatric oncologist not a emergency physician. She has been referred to the right person and that’s not A and E

SingSweetNightingale thinking of you and hoping all will be well.

My son now 5 had the same issues from a baby I would also go back to the GP paranoid, he was never concerned as my son was later diagnosed with an auto immune and he always had eczema swiolem glad are extremely common in kids particularly ones who have reoccurring illnesses

I thought the GP urgent referrals were seen WITHIN 2 weeks not in 2 weeks time so you may well be seen sooner
I'm sorry you have all this worry but A&E is not the right place

Although a long time ago now, my son aged about 3 years old then, had very swollen glands in his neck, a swollen spleen, was very lethargic, and refusing most food,, he lost some weight quite quickly too.

We had a home visit from our doctor, who said he would come round straight away when we phoned for an appointment. He was only in the house about 15 minutes, after examining my son, and he said he was going to phone the childrens hospital straight away, and get my son in there that very night, it was New years eve.

We took our Son in straight away, our doctor didn't divulge much at first.

Son had an overnight stay, and had some tests the next day.. We had the results some time later, and it was deemed that it was glandular fever.

Our doctor told us later, that he was worried about a leaukeamia diagnosis at first.

Glandular fever takes quite a long time to be able to get back to normal again,and leaves a person quite weak for some time. until they feel like eating properly again, and building up some strength again. There was no medication given for glandular fever then. but it was quite a worrying time, as five weeks after that new years eve years ago, we as family were due to pack home, and go and live in the USA for three years. My daughter was going to be one year old a week before we left the UK. and was worried that she might become ill too, but don't think you can catch glandular fever,despite it being a virus.

So sorry to hear of your daughter's illnesses. My son had a visible gland on his neck that stuck out for about a year when he was young. We never did find out what it was. He's very thin so maybe just looked worse on him. He also suffers strange red rashes (the ones that don't go away with glass applied) after illnesses. He was tested for leukaemia for the rashes/bruising. It was clear for that but he did have a different condition. Obviously its very concerning (as it was when my son was tested) but I would think there are lots of possibilities for what it could be. It wouldn't occur to me to go to a and E for that but do what you think is right for your daughter.

@BeatrixKiddo88

You poor thing yes take your child to A and E now and I hope everything will be ok x

Really..

You know the diagnostic services for a whole variety of things are not open through the night.

The chances of even seeing a Dr are slim to none - likely triaged and told to go home and follow instructions given by GP.

Beyond all that though, taking a child who may be fine or may have a serious condition to the one place MOST likely to have a TON of germs, bacteria and virus floating about in it... is a risk too far.

With every kindness yes it WBU to take little one to A&E. It is hard to wait for the appointment but that is the process in which she will see the specialism she needs.

I understand 100% that it is very very hard to hear that lymphoma or leukemia are the possible worst case scenarios. However the GP has to be congruent about this.

Taking a 'simple' blood test is often not at all simple in toddlers and the GP surgery are probably not actually even equipped with the equipment to do this, correct bore needles, smallest blood bottles, staff experienced in taking blood regularly from such small veins, etc therefore at this age bloods are often taken in paediatric outpatients rather than the GP surgery.

If something changes and she needed more immediate care that would be different.

The problem with accessing A&E is it directly impacts on service capacity for others. When A&E is for children who have an immediate care need not for reassurance when an appropriate referral has already been made. Its the same as pushing in any queue, it impacts the people whose care or assessment may be delayed because the A&E staff are having to see you, even if it's just to explain that you've attended inappropriately. That drain on time, costs and resources impacts on the care of other people's children.

I hope you hear very soon about the appointment and that the news is good for you little one. Until then I hope friends and family can support you while you carry these heavy worries.

A & E won't be able to give you the reassurance that you crave. They are not oncologists and won't suddenly start an investigation into the cause of the lump. You also risk exposing your child to who knows what in the waiting room. I know it is agonising to wait.

Four years ago my teenage son had cancer. We do have private medical insurance and we could have paid but you don't just sort of find a random oncologist and tell him about it because in our case the cancerous bit had been found and removed during an appendix removal and the public hospital system was dealing with it and had all the information. We had been told it was cancer and we had to wait weeks to see the consultant to find out the prognosis even though we immediately arranged a private CAT scan. We kept the news that he had cancer from our son till just before the appointment because it didn't do him any good to know and he was working towards exams. So I had to put a brave face on it and locked myself in an en suite bathroom to howl about it. My husband probably wanted to howl about it too but he was putting a brave face on it too. (Maybe he used the same bathroom when I wasn't there.)

First of all it might not be cancer at all with your daughter. Lymph nodes come up for all sorts of reasons. Even if it were, there is very likely to be effective treatment. You have to stay strong so you can be there for your daughter.

My son had a neuroendocrine tumour in his appendix which was completely asymptomatic. In my son's case, the cancer was small, had stayed completely within the appendix, was well defined and was completely removed without any evidence that it had spread. The swollen lymph node he did have was caused by an unrelated stomach bug (Yersinia enterocolitica) and it had shrunk down by the time of the CAT scan. He has been told that in all likelihood this will just be an interesting footnote in his medical records. He has been very brave about it all. His older brother tells him it wasn't proper cancer as he didn't need chemo or radiation treatment

So I am hoping you hear soon and it is good news.

I had a very similar situation, I knew I couldn’t wait the two weeks. Once the referral was made I rang every morning to the appointment booking line or the clinic he was referred to to ask about any cancellations that had happened that day. I ended up getting him in 5 days after the referral was made due to a cancellation. I really would suggest doing that.
Hoping everything goes well for you xxx

I don't think going to A&E will achieve very much right now, unless symptoms worsen. One thing you could do is check with the GP practice early next week that the referral has been sent and/or check with the place you have been referred to that they have received it.

We had sand with my daughter aged two. Hellish day in hospital only to find out that it was all fine. She gets extremely swollen glands that don't go down for months/years.

My DH saw a GP on 29 Dec, he sent a 2 week referral that day. On 2 Jan he got phone call to go in the next day. So hopefully your appointment will be as quick. Unfortunately they do seem to only be doing urgent referrals at the moment, which is good for some.

What an anxiety provoking time for you. Can you phone the GP on Monday and explain your concerns? You might have a better idea of timescales.