should i take ds to hospital again???

[CraftyDuck]

hi everyone im new here so sorry if this is the wrong place but im at my wits end again. my youngest ds (10) has been poorly all week and im not sure what to do anymore. hes got so many things going on its hard to keep track sometimes. hes had the asthma for years and the hospital say its “under control” but i know it isnt because hes been wheezing loads at night and the inhalers dont always touch it. then yesterday he said his legs were hurting too much to walk far and just laid on the sofa all day. he barely ate anything either and he has such a restricted diet already cos of allergies (no milk no eggs no nuts no gluten at all) so when he refuses food i panic.

this morning he had what i think was another seizure, eyes rolled back and went floppy for a few seconds, but when i mentioned it before to gp they said maybe its “not a real seizure” which made me feel like i was going mad. i know what i saw though. he’s also burning up on and off but the thermometer keeps saying normal so i dont even know.

im so tired of going to hospital and being told its nothing and to just keep an eye. last time they made me feel like i was wasting their time but i cant shake the feeling somethings being missed. i honestly dont know what to do. do i risk taking him in again today or wait and see if he picks up? i just dont want them thinking im some over anxious mum but i can see hes not right.

any advice please?

I'm
sorry to hear you are having such a difficult time, did they do blood tests?

maybe call 111 see what they say

I would always go with my gut and go back tbh.

When was the last time he was seen? I’d always err on side of caution.

Absolutely take him, trust your gut

Definitely take him back. Always trust your gut feeling. Demand to see someone senior if you feel you're being fobbed off.

thanks everyone i just dont know anymore. they did bloods back in june when he was in with the asthma flare and they said all fine but he was so poorly i dont see how it could of been. hes always tired and catching things and they keep saying “its just viral” which is what they always say about everything. it feels like no one is actually joining the dots.

i did call 111 back in july when he couldnt breathe properly after running around school and they sent an ambulance but by the time we got there he was settled again and i felt like such an idiot. im scared if i keep calling they will stop listening to me.

my gut is telling me something is wrong but i also dont want to traumatise him with another hospital trip if they just send us home again. hes so clingy and anxious already and he wont eat anything today except a bit of dry toast. he keeps saying his tummy hurts and hes lying under his blanket. i feel like if i dont take him i’ll regret it but also i dont know how many times you can keep going back before they start writing you off.

You are his advocate, take him. Don't worry about being written off - be consistent and give clear explanations of why you're worried. Right them all down in a list on your phone if you're worried about sharing them coherently

Mothers intuition is so important, please go.

Take him back and whilst you’re waiting google Matha’s rule. Use it to demand a second option urgently if you aren’t getting what you need.

Well we are 2 months on from July, just take him. Is it all the same condition/issues persisting or something new? Sounds like something to follow up with GP too.

Op just take him, DS had several hospital visits when younger due to his asthma. They where always really helpful and willing to see children as they can go down hill quite quickly.

I would always take them in unsure.

I also say take him. I work in emergency care and see a lot of time-wasters, you are not one. We also consider the level of parental concern in risk assessing so repeated visits will make them listen more, not less. I think he is too young for psychogenic non-epileptic seizures so I would question your GP’s judgement on that. Get him seen.

Oh and yes I learned the hard way that if you ring 111 about asthma symptoms they will always send an ambulance. So I would take DS to hospital myself or doctors if I could get in as he never needed to be seen that urgently.

Can you take him to a different hospital? Yours sounds awful

Wheezing isnt controlled asthma

Kids often say their tunmy hurts when it is their chest and they're struggling with asthma

Could the earlier episode have been low oxygen?

Whatever this is, I'd be going to A&E

thank you all i just feel like im banging my head against a wall with it. i try to write things down but when im in the hospital i always get flustered and end up forgetting half of it and then later on i remember and feel stupid. i will try and do a proper list this time.

hes had problems since he was a baby really, in and out with chest infections and wheeze, then they said asthma when he was about 3. hes had funny turns since about 5 where he goes blank or floppy for a few seconds, they said maybe seizures but tests came back clear. allergies were picked up slowly, first milk then eggs then nuts and gluten, it feels like every year theres something new. hes always behind in school too, reading and maths are a struggle, and he has meltdowns a lot cos of noise and crowds. hes autistic and also has adhd so concentrating and coping in school is really hard. none of my three older children were like this, they were healthy and never had so many illnesses even between the 3 of them.

school attendance is awful, barely 60 percent last year, they are on my back all the time but what can i do when hes sick so much. this week he only managed monday morning and then they sent him home early cos he was wheezing badly and coughing so much they said he couldnt stay. hes been off again since then. they keep saying maybe hes anxious not ill but i know when hes ill and hes not faking it. the hospital makes him anxious anyway cos of his autism, he hates waiting rooms and the noise and the poking and prodding, it can take hours for him to settle, so even thinking about going back makes me feel sick.

i have thought about trying a different hospital but i dont drive and the one we go to is the closest, it would be a nightmare with buses and him not being well. i feel trapped with it really.

i just want someone to actually listen and join the dots instead of acting like im being dramatic. i know him better than anyone and something isnt right.

Take him to hospital. If the seizures are new they need to be reviewed. If you have to travel a bit further to a big hospital, I'd do that and ask for him to be seen by a consultant paediatrician.

Sorry to hear this, I’m a children’s nurse and definitely we are taught to listen if a parent says ‘something isn’t quite right’. Definitely trust your gut, take him back to A and E, keep a diary of everything that’s happening for him and ask for a second opinion/further referral from your GP or paediatrician

Not really to do with your current problem, which you should act upon with your gut. But I think that you need to go through your GP to get a referral to a paediatrician at a hospital to try and get them to join the dots. It will be an appointment with peidatrics where you should be able to list out all your concerns and they will be able to think more holistically about the whole child. I think at A&E they are more likely just to try and deal with the current issue, rather than investigate background problems.

i just dont want them thinking im some over anxious mum but i can see hes not right
No good doctor will view you as overanxious, because you're not overanxious, you are seeking care for an unwell child.

The seizure is new so it would be understandable to feel he needs to be checked.

Can you ask a friend to come with you, to help you explain? Or write down the issues on paper, so nothing can be missed.

I think you need a GP apointment and, as a PP said above, a possible referral to a paediatrician. People in A&E won’t join the dots necessarily.

Write down a list of everything going on, with dates. Can you bring someone with you who could support you to stay calm and communicate?

Is he having plenty of liquids? His stomach may hurt if he is constipated, which could happen if he gets dehydrated.

Not convinced a&e is right but you should definitely be seeing a gp and getting a referral to a paediatrician. Is there an out of hours gp service you could see? Is he using more than one type of inhaler? Speak to 111 and go to a7e if they suggest it.

Also try to record when he goes floppy, a recording would be useful.

Phone 111
maybe febrile convulsions if he’s overheating. And perhaps the thermometer is broken hence it seems fine.
Gwt him checked out again. I’d buy a finger oxygen measuring thing to check his oxygen levels. Mine was under a fiver online.

just wanted to update you all i ended up taking him in around 5 after he had another bad coughing fit and went all pale. i couldnt sit at home anymore worrying so we got a taxi to a&e. we’ve been here ages already and still waiting for a doctor, they did obs at triage and said sats ok but i know hes not right, hes very floppy and just lying on me. he keeps saying his chest hurts and he doesnt want to move.

hes managed a couple of sips of water but no food, nurse said keep offering but its pointless he just wont touch anything when hes like this. im trying to stay calm but its so hard when i know something is wrong and im scared they will just say its nothing again. ive written everything down like you suggested so hopefully i dont get flustered this time.

will update when we’ve seen someone. thank you all for listening it helps just to know im not going mad with it.

Oh op this must be so hard and worrying for you. Having been a hospital mum for years I must tell you that you must advocate for your child. It’s hard but you have to be strong for him and speak up loudly and firmly. Do NOT let them fob you off again.

I absolutely HATE to say this but as a woman on your own there, you need to speak louder. I don’t give a toss what some medical staff may say but there is a subconscious bias towards dads in hospital. Plain as day when my husband speaks up for our child, they all listen carefully and act. When I’m there alone I feel the weird suspicion towards what I’m saying. From men and women. It makes me want to rage. So please ask for a second opinion or a third if you’re not happy. Kick up a fuss if you need to. It should’ve be this way but it sadly is. Refuse to leave until he gets checked out properly.

I’m rooting for you ❤️ sending strength.