SN and general illness: a bit of a rant!

[coppertop]

Had to take ds1 to see the doctor on Saturday as he had a high temp and a dry cough. He's asthmatic so it was the cough that actually concerned me most. Treating a full-on asthma attack is very difficult as he won't tolerate anything on his face, so I try to 'catch' these things asap. Anyway, the GP (not from our usual GP surgery) tutted a bit at ds1 lying down under the waiting-room chairs. Ds1 was a bit overwhelmed by the lights and loves enclosed spaces. The doctor looked in ds1's ears and told me had a bad ear infection and that "it's important for parents to notice these things MUCH SOONER!" I explained that ds1 has AS so doesn't tend to feel pain, and that it wouldn't occur to him to mention it if he DID. The GP said 'hello' to ds1, who eventually replied with a stilted 'hel-lo'. The GP said "Well he seems fine to me." WHAT????!! I left very quickly. So, is this kind of ignorance common amongst doctors? Does anyone else have to just guess when their SN child is ill? Ds1 tends not to act differently until he's pretty bad. He'd been quite happy at pre-school all week. Any suggestions?

Hi Coppertop - no advice but tons of sympathy. bloody GP's - a bit too much of the G and not enough of the P -iykwim!

we have an ignorant gp too, sorry I have ranted about it many times before so I wont bore you all again!

Hi coppertop my ds2 has severe developemental delay and cannot talk at all or express himself when he is ill like most children as he feels no pain.

I find that watching out for 3 things makes me know whether he is ill.

1. he is more sleepy
2. his temperature
3. jigsaw legs (those purply lines on the legs) My ds is tube fed so doesnt lose his appetite so if your ds goes off his food maybe that could be a sign for you.

As for the ignorance of some docs, yes it does happen and I could scream everytime I have to go through the whole medical history but at the same time if a doc can help my ds I dont care about explaining myself.
HTH and hope he gets better soon
xxx

BTW those purply lines (jigsaw legs) denote infection and illness.

Hospital told me it is one of the most important things to look out for.

I rarely take my boys to the GP- i make DH take them....and if i had to i'd probably wait till the surgery is shut then id 'HAVE' to take them to the local hospital to see adoctor'on call'!!
WHY do doctors make it so hard for us? At the end of the day i suppose it's down to us to take all our books about AS etc in to the doctors because they often have this sterotyped image and as soon as (in your case) the child speaks they think the child is fine! Lots of hugs coppertop!

A lot of gp's and hospital drs are so crap about autism I wonder whether they do any training at all. My friend has this as a reoccurring problem- her daughter gets severely ill quite often (enough to be hospitalised) but because she doesn't feel pain is frequently ignored when she tries to stop things early.

Best advice really is to experiment and find a good gp. Mine is good- he believed me when I told him ds1 hadn't done a wee for 40 hours for example.

Don't worry I was told by a dietician when ds1 was 2 that he couldn't possibly be autistic (this was pre-dx but I had big suspicions) because he put some toys away when I told him to. God knows why he's not talking now then. These people who know nothing about the condition should keepo their mouths shut really (she didn't have a clue- she was recommending star charts although I told her there was no way he'd understand them!)

oh coppertop how unkind to make you feel like a bad parent. Sounds like that gp was just totally clueless.
Don't have any suggestions really but this brought back memories of a day this summer - dd with DS was virtually unresponsive in her cot one morning - she is a bit developmentally delayed but otherwise an ordinary busy 2 year old - I took her to the GP who knows dd and immediately had her admitted to hospital, then for the next few hours I had to deal with junior doctors looking at dd lying listlessly on the bed with her eyes half open and asking me whether she isn't always like this!! ARGH!!

I don't think it's just autism. I've lost count of the amount of medical professionals who have asked me what is wrong with ds2, then said that he looks ok to them. Well yes he does, because he is usually sitting on my lap or being held by dh. Put him down then say that again. Never judge a book by it's cover is a phrase some people should have engraved on their foreheads.

The most useful thing I learnt in my training in paediatrics was to preface anything I said to parents with 'of course you know your child far better than I do...', and I still say it a lot.
Sorry many of you think GPs are crap - some of us are OK I think, and if anyone is interested I can give you some tips for choosing a good one.
So that's it, I've COME OUT !!

EEEK, what are you thinking of?!!!!

Thanks everyone. I didn't mean to have a rant but the more I thought about it the more annoyed I got. If being able to say hello was an accurate signpost for a dx, we wouldn't put ourselves and our children through endless assessments and tests! Our usual GP is lovely and brilliant at getting ds to allow him to examine him. This one was part of the out-of-hours 'service'. I'd expected to have to fight for help, resources etc (thanks, MN'ers for the advance warning!) but didn't expect to have to justify the dx once I'd got it. The good news is that ds1 is looking a lot better after spending a couple of hours gently snoring in the armchair. We'll probably be paying for that nap tonight though.

jmb1964 - our usual GP is great!

jmb1964, I also think the two GPs we see are just fab! It's SHOs in hospitals who drive me nuts...

My dd 3 has been ill for the last couple of days and has those jigsaw legs id never noticed or heard of before. Mumsnet is soooooo useful!
My doctor was rubbish till he stopped smoking, then he had all the time in the word for his patients! Before he must have been hating every minute in the surgery wanting to go and have a fag!!!

You sound like a lovely GP jmb. I was actually thinking about a nurse I met recently, the GP's I have now are great. I have had some stinkers in the past though .

I have got wonderful GPs, all of them at the surgery. One even made a home visit once because my ASD son had a festering sore on his lip and the GP didn't want us to wait in the surgery. I take my son to the surgery now as he's much easier to handle. By coincidence one the local mums I know who has an ASD son has just gone back to work as a GP and joined our surgery, hooray!
I had crap experiences in hospital. Took son for EEG at Guy's, phoned first to ask how they would sedate him as he won't take medicine (hence has never had an antibiotic in his life!). "Oh, we're used to it don't you worry." I was dying to see how the professionals do it. Well they couldn't. We had to come home again! Have also complained before about all those buttons behind the beds, "oh we're used to children with special needs......." 10 mins later, "why does he keep pressing the nurse call button?". Sinks in every room drive me mad, even the play room at the local hospital has got a sink in it. Put most ASD kids, certainly mine, in a room with toys or a sink........ yes the sink wins every time, the room, the son, the toys and the other kids get treated to a shower and I couldn't care less, just take a dry t-shirt with me now
The only way I can tell my son is unwell is if he sleeps a lot or has a temperature, he just doesn't have the behaviours to go with feeling ill, getting attention, whinging, moping etc. I always assume he's OK and most of the time he is as he's strong as an ox and almost never ill. On one occasion I carried on as normal and took him trampolining...... luckily he was sick down a friend's back before we even got on the trampolines.... ho ho!

lol @ the sinks davros- my son is EXACTLY the same (what is it about sinks?)

My GP is very good- I'm lucky with him. He didn't even mind when ds1 climbed up and sat on his lap. He did have fun trying to take his blood pressure! But at least he doens;t do that irritating waving a teddy in an ASD kids face- or showing him on a teddy what he's going to do- like ds1 would understnad that!

Luckily we haven't had too many hospital visits. Thank god- my son doesn't do waiting.

my dd loves sinks too! -and handryers aswell though. When I went to her school the other day she wanted the loo so I took her in their and she used the toilet and I said are you going to wash hands but before I had finished saying it she was already there. Then it was to the handdryer, then back to the sink and so forth. She must have done it six or more times and there was a queue forming so in the end I had to drag her away. She was not happy!

oohhhhh nooooo handryers cause meltdowns- far far too scary

I must admit that our GP's are brilliant. So is the consultant and other professionals we have to see.

Our consultant's an alcoholic (and well known for drink driving apparently). These days we see his underlings who are usually crap unfortunately. They don't seem to know much about autism.

Finally we have a good SALT and good OT though.

I loved the persistence of the hospital nurses, bless them. They were determined to get ds1 to wear the nebuliser masks properly instead of just holding them to his face. Promises of stickers, toys and books got them nowhere. Whatever nurses are paid, someone should double it. Is a fear of plasters a typical ASD thing? Ds1 will scream "Take off!" if he even sees someone else with one on.

coppertop - hope your ds gets better soon. I think you did all that you could in the circumstances.

BTW my ds loves plasters and is always asking for a 'pwaster' for even the tiniest scratch.

hehe sinks. my dd2, as far as i know not ASD (she is just 15months, yeah a bit nutty but so am i) will stand at a sink all day playing with the taps, the toothbrushes etc. she takes any step she can find and will just stand there with a big goofy grin on her face. but the taps HAVE to be on, other wise its tantrum time.