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?

Fingers crossed someone sees him soon. I think you have done the right thing taking him in and hopefully they will be able to get to the bottom of why he is feeling unwell.

Could he have low blood sugar due to lack of food & being unwell - have a read of ketotic hypoglycemia or ask the nurses - especially if floppy and not eating.
just be really clear that you don’t want to be discharged until a proper review.

My late OH, who was a GP, always used to say that if a mother says there is something wrong with their child then there is something wrong, even if he couldn't see it straight away. We are closely attuned to our children in a way that no-one else can be.

Well done OP, I'm with you in spirit, sending lots of love

Hope everything is okay OP. Definitely ask for a blood sugar level and bloods for dehydration and inflammation markers, a chest X ray - this would be the bare minimum I'd be expecting from a&e tonight.

Hope he's OK OP.

Always trust your intuition OP always . You’ve done the right thing .

just seen the doctor and honestly i dont know how to feel. he listened to chest and said yes theres some wheeze but not enough to keep him in overnight. they gave him a neb and said wait and see how he goes. he perked up a bit after but hes still floppy and tired. i tried to explain about the funny turns earlier and how hes been so wiped out all week and not eating but he just said maybe viral again. i feel like thats all i ever hear.

they said if he gets worse bring him back but i dont know how worse he has to get before they actually take it seriously. im scared we will just be back here again in a few days. i asked about more tests but they said hes already had plenty and nothing showed up.

hes curled up on the chair next to me now dozing, i hate dragging him through all this but i had no choice. we’re waiting to see if they will discharge us soon.

Sounds similar to my ds. He ended up with pneumonia after dr said it was asthma abd under control he gets floppy, lethargic etc. I have thermometer, oxyimeter etc. As we have dr/a&e/ ambulance so often. I do understand how u feel. Hes also adhd, also coeliac.

Tell them you’re not happy to take him home.
They need to do better for him. All they’ve done is listen to his chest? They need to do bloods.

thank you i did ask about bloods but they said he doesnt look dehydrated and his obs were fine so not needed. i felt brushed off tbh. i wanted them to do a chest x ray too cos hes had so many chest infections over the years but they said it wasnt necessary this time. i always feel like i have to fight for every single test and then i get made to feel like im overreacting.

hes still so pale and floppy even after the neb, hes just lying there with his blanket and i know in myself this isnt normal. i tried to tell them about his history and all the different things going on but they just nod and say “lets wait and see.” i wish i had the confidence to insist harder but i get flustered and then doubt myself.

Isn’t there a new protocol where you can ask for a second opinion? Can you try that?

I asked AI what to say in this Situation, this is what I got:

You're absolutely right to trust your instincts. When a child with a history of asthma is pale, lethargic, floppy, not eating or drinking, and wheezy—even if observations are within range—that's serious. Here's a calm but firm way you can speak to the medical staff to ensure your concerns are heard and documented:

What to say;

”I understand that his observations look okay right now, but I need you to listen to me as his parent. My child is not himself—he's pale, lethargic, floppy, and not eating or drinking. These are not normal signs for him, and I'm extremely concerned.
He has a history of asthma, and he is wheezy. I'm worried he could deteriorate quickly. I do not feel safe taking him home like this.
I’m asking for a senior review, and I want this conversation documented in his notes. If you discharge us against my judgment, I want it clearly stated that I raised serious concerns and asked for escalation.”

AI also suggests:

Additional things you can do:

1. Ask for a senior clinician or consultant – not just a junior doctor or nurse.
2. Request a second opinion – you’re entitled to this.
3. Document your concerns yourself – write down what you observe and what they tell you, with times and names if possible.
4. Use your phone to record (only if absolutely necessary and legal in your area) – even saying, "I’m going to record this to make sure I’ve got it all down accurately" can sometimes make people take you more seriously.
5. Mention safeguarding – calmly say:

“If something were to happen to my child after being sent home like this, I would have to raise concerns about the safety of this discharge decision.”

Stay calm, don’t be aggressive but be firm and insistent.

Sending strength

Epilepsy is comorbid with autism and adhd. As are a multitude of other conditions, some of which can involve non epileptic seizures.

But some children can have them when unwell as standard, and grow out of them. My builder used to go like you've described if he got overexcited in any capacity.

I think you need to stay put where you are even if they say he is fit for discharge, and ask for a paediatric opinion. Someone will be on duty somewhere.
I attended an A&E with chest pain and was sent home. Two days later I was in with a heart attack.

Can you take someone with you next time to advocate for you. My husband does for me. I get all flustered. My DIL did for my son last year. She was very insistent taking notes, names, times. They finally gave him intravenous antibiotics in A&E. The next day when the consultant arrived he was admitted with meningitis .. so find a bolshie friend, relative to go with you.

If your gut feeling is that there is something wrong, insist on basic blood tests.

I was in a similar position a while back and said 'I'm not taking DC home until you've done X'. I was made to feel daft and like the over anxious parent but they agreed to do the particular test I requested and it showed what I suspected.

Doctors are highly trained, skilled and to be respected but sometimes the parents' voice has to form part of the picture. If you are deep down concerned don't be afraid to advocate strongly.

Sounds like an infection maybe,I would def take him back,he may well be low on iron/b12.is he on Montelucast a tablet for asthma,my son takes it at night for his asthma cough,works very well.

thank you all so much for these replies ive been sat here reading while waiting and its really helped me not feel so alone. i wish i had someone to come with me but its just me and ds, the older ones dont really get involved and i dont have anyone else nearby. i do get so flustered and then after i kick myself for not saying things properly.

i really liked that wording someone shared from ai (never thought id be saying that lol) it actually says exactly what i feel but can never get out right. i copied bits of it down in my notes so if they try and send us home tonight im going to say it. hes still lying here looking pale and floppy, he perked up for a little while after the neb but then went straight back down again. hes had no food at all still and barely a sip of water.

they said a doctor would come back but weve been waiting ages now. im just going to stay firm this time, i cant keep letting them dismiss me. i know him better than anyone and this is not just anxiety or me being dramatic. i will ask for a senior review like you all suggested.

will let you know what happens.

@CraftyDuck good for you 👍

There was a poster who absolutely refused to take her family member home a few years ago now. She said I'm going home . They're your problem to the nurse.

How did it go op when the second doctor came along? I hope pp's posts of what to say from AI helped, I thought it was very well laid out. Your poor son and poor you, you must be exhausted and frightened.

A number of trusts are signed up to Martha's Rule. Ask if they are one of those trusts. Even if they are not it will make them listen to you.

"Martha’s Rule is a patient safety initiative to support the early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon.
It has been developed in response to the death of Martha Mills and other cases related to the management of deterioration. Central to Martha’s Rule is the right for patients, families and carers to request a rapid review if they are worried that their or their loved one’s condition is getting worse and their concerns are not being responded to."

I hope you both got some rest last night. Next time he has a turn, video it. Photos and video are great for evidence of chronic conditions which never seem to show up for appointments.

morning all and thank you again for all the support last night it honestly kept me going. we didnt get home til about 3am. they eventually got a senior doctor to see us after i insisted and i actually used some of the words you all suggested and it made a difference i think. he listened more and agreed to do bloods which finally felt like someone was taking me seriously. results came back normal apparently but at least they did them this time. he also said he wants gp to chase up referral to respiratory clinic again.

they gave ds another neb and some steroids and said we could go home once he was settled. hes still very tired today and wont eat more than a few bites of toast but at least hes drinking a bit now. hes lying on the sofa with his blanket, pale and wiped out. im watching him like a hawk.

i am exhausted, barely slept at all and just running on adrenaline really. i do feel a tiny bit better knowing i pushed back and asked for more. i will try and get a video if he has another funny turn like suggested, i think that would help show im not making it up.

just wish someone would properly join all the dots instead of treating each thing separate. thank you all for caring it means so much.