ds been in hospital with meningitis but is AS still got in way

[trace2]

he started with tonsillitis on thrusday last week gp gave abbs sat morning worse up with a pin prick rash didn't go with glass test, rang nhs direct to be told ring 999 for ambulance, i knew he wouldn't go in that and make matters worse so took him straight in to a&e where explained what happened they took us straight to ward on isolation took bloods put on drip told us what they thought , but ds looked ok other than being ill with his tonsils and rash . any way doc came said they rash looks like septicaemia but his head eyes , neck seem ok, i had to tell them ds is AS and probably worse than he looks and he wont say !! they didn't listen and told we have 48 hours on abbs on drip till we get results but they say he cant have meningitis but have to treat it cos of rash, anyway cut a long story short they came back next morning and realized he looked even better and blood works showed how ill he was and they said never seen a child hide symptoms on meningitis and told us he been very lucky the gp gave strong abbs for his tonsils which had helped fight it quickly and if he didn't have the rash they wouldn't have treated with iv abbs when we went in so yes we very lucky BUT my point is is AS and strong pain thresh old could have made him a lot worse if didn't have the rash, as the doctors don't listen when you tell them about AS

It is truly terrifying isn't it?

My DD1 was discharged from hospital aged 6 three times with appendicitis because she didn't respond appropriately to the pain. I had to stand in A&E and refuse to take her home and at that point she had an appendix abscess because it had perforated. They removed it the next day but she was very poorly for a couple more weeks.

She was very lucky to survive just like your DS.

I don't think there's a way to tackle this as I still get put down if I suggest that my DD may be in more pain than she's letting on.

I agree, it IS terrifying. DS has ended up in surgery twice and intensive care, when doctors initially said he just had an infection!

I find they are always ASKING our opinion as "you know him best" but then promptly ignoring it. DS doesn't have AS, he has hydrocephalus and everything is attributed to a shunt blockage, even when he has been showing no symptoms of this It could be, of course and I am glad they consider it but would like them to consider that it might be other things too (and usually is!).

You sound you've had a hell of a time trace2.

Everybody thinks they know all about autism but they really don't. Health professionals (other than pyschs and paeds)tend to be the most smug about this.

I hope he's on the mend soon. He'll probably recover faster than you will after all that oworry.

thats is the problem with high pain threshhold, what they describe as a sight tummy ache could be far far more severe

not being able to ask for help is quite usual with spectrum: I have- quite literally- the scars to prove that (borderline / traits, years of eczma and psoriasis on and off)

sorry to hear his been unwell Trace2, poor lad. My DD2 has pnemonia and they missed it 3 times because she seemed ok

DH had meningitis as a child and was ok, so hopefully your DS wont have any bad side effects.

just goes to show our little treasures are so brave and strong! and as you say yes they say you know them best but still don't listen . so glad all your children are ok it scares me thinking one day some thing will be missed and cause death some where in some children

sorry to hear it's been a less than good experience How is he doing now, back home?

weak but ok, getting tired really easy too !

Really sorry to hear your dd has been in hospital and you've been through so much worry and stress.. I agree with Starfish that they pay lip service to the idea of parents knowing their child.. We had GP out 3 times before new year and went to hospital and were sent home again with all telling us dd just had a virus and was very tired. I knew it was more serious that that.. When admitted again had septic shock, pneumonia, complications from swine flu, and all had missed it.

Also found being in hospital with a child with SN very stressful..Especially isolation nursing as you sound like you had trace2.. It requires extra nursing support I think as I had to do everything 24/7 and was totally knackered, also any treatment was fought very forcefully by dd once she started to improve and people made me feel like she was really difficult.. Very stressful.. Really hope your ds is on the mend now. You must be shattered..

Glad your ds is home (i saw your post on FB a few days ago and have been thinking about your poor ds).

Dd2's ASD is a pain when she is ill, i have just got back from the gp's with her as she has a UTI, she has had it for over 2 weeks but i thought she was just fiddling with herself , she hadn't complained of any pain so i didn't even consider a UTI until today, i feel really guilty, this time last year she had Scarlet fever which took 3 weeks to diagnose. Its so hard when they can't tell you how bad they feel.

I find taking the dd's to any doctor or hospital very stressful, most doctors dont have a clue about ASD's and dont know how to treat our dc's.

Glad he's on the mend xx

A few eyars ago DH, who in all kindness isn;t as ASD aware as he might be if I were less bolshy, took ds3 to A&E for a cut face- and let them operate on him with no anaesthetic thinking as did the maxillofacial surgeons that no response = no pain.

Imagine his face when I showed him some Uni stuff about kids feeling it but knowing how to communicate that.

Poor ds3.

Trace hope your little boy is OK soon, nasty near miss. hugs.

So sorry to hear your DS has been so poorly, bless him. Hope he's better soon... he'll be causing trouble again before you know it ;) and hope you get some r&r asap too!

It is very frightening that they can either hide it or simply not understand how to communicate it. A girl I know (severe LD and ASD) once kicked the bathroom sink during an episode of challenging and self-injurious behaviour - didn't even flinch when she did it, carried on as if nothing had happened. Within a few hours we noticed her foot/ankle had started to swell (she was still walking and running round on it... no problem... not even a slight limp!), So we took her to a&e and they did an x-ray (that was fun!) ... turns out she had broken her ankle. She needed an operation and pins put into the bone to put it back together! :(

She is completely non-verbal so whether she just didn't feel it or didn't know how to communicate what she felt, I don't know.
What I DO know, is that the doctors jaws were on the floor when they saw the x-ray come back... as a few minutes earlier she'd been running round the waiting room causing havoc!