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?

Get some sleep tonight if you can and tomorrow arrange a gp appointment. Tell them that a&e say he should be seen by a respiratory clinic. Get as much liquid into him as he will take - ice lollies perhaps? Tempt him with small amounts of food, anything he normally likes even if it's rubbish food you normally limit.

You must be shattered OP. Good for you for fighting to see a senior doctor and getting bloods done. I hope today you've tried to take it easy alongside your son. Housework can wait, errands can wait.

Designate a notebook for him and always note symptoms and dates. Indeed, take it to dr/hospital and write down what they say/ do too. This is sooooo helpful with my disabled DS. I can get a clearer overview and they are more likely to believe something I have written down than something I say (which is not entirely logical)

I second the Martha’s rule it’s just been introduced into my hospital and it really does help!! Also children can appear well but then suddenly decline. In my opinion mum always knows best!!!

Are you going to go to the GP to talk about a referral, OP?

Has he ever had his B12 and Folate levels tested? He would need to be at least a few months free of all B12 supplementation for that result to be accurate, and don't take a doctor's word for it if you're told they're normal/satisfactory, always ask for the actual levels and lab ranges. I would also want Vitamin D checked. Vitamin deficiencies are quite common in Autistic people

That's exactly what happened to my son. He seemed to have just a tummy bug but he declined very quickly, thankfully he was already admitted because he was dehydrated and his heart rate was high.

Martha's rule wasn't a thing when my son was in hospital and I feel like it could've really made a difference. Every parent should ask for it if they feel like their child is declining.

How is he now OP? of he's still not well, have they tested for the autoimmune markers?

I have a friend who was misdiagnosed as a child and Lupus nearly killed her before anyone would believe that she had it.

Keep fighting, you know he's not well, trust your instincts.