Anyone else feeling a bit sceptical of the 'experts'

[claw3]

Had an eye appointment for ds 4.5 recently, he was diagnosed with Brown Syndrome (unable to elavate eye) 3 years ago. This is a life long physical condition and doesnt just get better on its own. This has now disappeared and he doesnt have it anymore!!??!!

After a blood test 3 1/2 years ago, expert read his results wrong and told me he was not anemic, when he was and this went untreated for a year.

After 2 1/2 years of taking iron supplements and being told the colour would return to his cheeks, im still waiting he is still a deathly shade of white. Have they got this wrong too, is he still anemic, have result been read wrong again??

Sorry for rant feeling very anti experts at the moment!!

GP and counsellor made an absolute dog's breakfast of my antenatal mental health problems. thankfully the hospital obs/gyn consultant sorted things out. So I suppose that's a 50/50 one!

OMG im so with you on this!

"hes a charming lad, theres nothing wrong with him" - (2.8y non-verbal, developement delay, sensory processing problems and FTT) as expressed by paediatrician.

On the anaemic side of things, look into 'coeliac disease', just a passing thought...

Yeh I agree. Also find that what they say in the clinic and what they actually write up in their reports are so dissimilar.

Riven - LOL i suppose you learn to take everything with a pinch of salt.

Totalchoas/misscut If i had a pound for every time i heard 'dont worry he will grow out of it' or implying this is all your fault, id be a very rich woman

Quite a few people on MN have suggested coeliac disease to me and i will mention this to the 'experts'.

or "but there's such a wide range of what's normal with speech/language". Add that one in (coupled by patronising smile).

Total - SALT have been very kind to me over the years, they send me work to do with ds through the post. He has never had any treatment, just assessment every 6 months to congratulate themselves on the improvements he makes!!

oh it wasn't SALT that said that - it was the GP and HV who refused to refer.

Oh right, i was being sarky! grrr dont even get me started on my GP he he!!

I have to pick up prescription every 6 months for iron supplements for ds and every 6 months we have the same conversation.

'Why do you need supplements' because ds's has eaten nothing but chocolate spread sandwiches for the last 4 years.

'dont worry he will grow out of it' I doubt it he has SMD, his central nervous system isnt working properly, its not that he wont eat, he cant. 'dont worry, im sure once he starts school and sees the other kids eat etc, etc'

Me just give me the f*ing prescription!!!

My GP is actually great. But I've had my fair share of experts over the years.

-Ah, but there can't be a physical cause for this pain as nothing shows up on the X-rays (this from a consultant paediatrician!).

-You mustn't let her use a wheelchair because then she would start to see herself as disabled.

(from several consultants at various times. -Right ok, so we'll just stay at home then, shall we?)

-Oh, aren't you lucky to be hypermobile, just like David Beckham?

(-yeah, always scores from his wheelchair, doesn't he?)

• And you will have beautiful skin when you're middle-aged, it will age much more slowly than other people's.

(-oh yes, that really compensates me for being disabled and in pain when I'm 10, doesn't it?)

My HV, the SALT's I've seen, my GP are all really helpful and supportive. The first community Paediatrician I saw with DS1 told me that she couldn't formally rule out ASD but she felt it unlikely and any difficulties he was having would be as a result of my depression. (DS2 was only a few old then, we'd seen the SALT who had agreed that he needed to be in the system and I was battling PND). On our way out of the appt DS1 waved goodbye at her and she said "see, he waved, he wouldn't do that if he had ASD"

And what do you know 1 year later, DS1 was diagnosed with ASD by a team of professionals, combined with his SALT reports, Pre-school reports, an ADOS test and information given by me.

Her words have stayed with me though

Cory - LOL, perhaps we start giving some sarky replies.

You are very lucky in having an understanding GP. I went to GP yesterday with refferal letter from dr at A&E asking for her to refer to chest specialist, after x-ray showed up shadows on my ds's lungs that were more prominent that x-ray taken a few months ago. 'I will refer you to a Paed'. Why would you do that, ds is already seeing Paed and has been for last 3 years!!

Oh yes, the non believers are always fun, if you cant see it or touch it, it doesnt exist.

Are you an over anxious mother, like me too!!

Diagnoses/prognoses DS had when little: Dandy Walker Syndrome; MRI showing severely malformed brain; will never be able to walk or talk; complete and irrevocable blindness...

None of these turned out to be the correct. 'Experts' do get it wrong, but sometimes it's the dogmatic delivery. I always value a doctor's opinion if they are prepared to admit, 'I don't know'. One of the trickiest things to do is make your own diagnosis and present it to a doctor - their egos cannot cope with patient's knowing more than they do!

Luckily, most of the time, they probably get it right and it's a hard job they're doing. However, go with your instincts - some misdiagnoses can be dangerous and get him checked for anaemia again if you are worried.

oooh the non-believers, dont get me started!!!!!

apparently DS2 & DS5 ABSOLUTELY DO NOT have any problem with dairy or wheat/gluten - well it didnt show up in the test, it must be right, right?

So the constant headaches, tummyaches and violent diarrhea are made up too then? well i suppose hes right they must be, cos they magically dissapear when we exclude these perfectly tolerated ingredients from the diet

This is interesting as I was thinking of starting a thread about this.

My husband's quote: "When they say it, it's evidence, when we say it, it's anecdote".

Parents' evidence is disregarded as parents are not objective. But experts are, in their own ways, not objective either. They are only human too.

Interestingly, it cuts both ways, as many of us have experiened professionals who won't believe anything is wrong whereas I've had something closer to the opposite.

You should question everything and ask for the research or anything that indicates 'evidence based practice'. Funny, jhave just been having this very conversATION WITH A FELLOW BEHAVIOUR ANAlYST. If people can't come up with the goods, most likely they are taki.g through their arses.If they fudge and avoid the question, they know they are in deep shit.

What you ask is not unreasonable.In educational circles in particular (so learning, communication and so on), a huge drive to use scientific evidence to demonstrate eficacy of what used.It's the subject of my MSc and believe me, there are a lot of people panicking out there because the chickens are coming home to roost and they shall be exposed.

Excuse mad typing, mixed metaphors and so on.Too solid days poring over references does that to a girl.

moondog, any chance you could have a look at my two-step instruction thread? Am having a super-sceptical moment again following reply from SALT which said she'll help DS2 increase his language processing by following a "structured programme" starting in two flipping months. I want to start tomorrow and am sure there is something simple I can do with photos.
Thank you in advance

yep told my dd as silent reflux had big opp for fundo on tummy and guess what no reflux dd went throughit all for nothing tbh i dont trust them now

yeah ds hasnt burst his fundo even though he can projectile vomit his full stomach contents through it!

Lingle - Thats really interesting what you say about working both ways and experts trying to put a label on everything.

Sensory issues seem to go hand in hand with autism or certain other disorders, i also read that extremely bright children have sensory issues.

My ds most definately has sensory issues. what im having a problem with is that sensory issues are not recognised as a DX on their own. For 3 years the 'experts' have been trying to put his sensory issues down to autism. IMO he definately doesnt have this, the Paed agrees with me.

Does a child have to have a disorder to have sensory issues?? The experts seem to think so, im not 100% convinced.

Hope you don't mind me posting here.
I don't have a SN child. Well, I might have. But it hasn't been diagnosed yet - sorry joke, sorry if thats in bad taste.

I took ds2 - 3 months old, no sleep at night, inconsolble crying from 10pm to midnight, to the top paed doctor in surrey last week. He was very old school. had no suggestions of what to do other than early weaning asap !!!!!

Every other mw, hv, gp and registrar at a&E, have been unable to come up with any sensible suggestions either.

But imagine if I had seen a very young, with it, up-to-date, lets try the latest inventions paed ?
I would have got a different opinion.

I am just saying, it depends on who you see, how old they are, what 'camp' they fall into, what experience they have, what latest innovations they know about.

See one type of person - get one type of opinion.
See another- get another.
This is true of every health person. Theirs is only THEIR OPINION. Theirs only.
Just remmeber that.

Dont mind at all, you are most welcome. Everyone will be along to stare and point at the someone from the 'outside' soon!!

Very true what you say. Also we cant expect every Dr, MW, HV, Specialist etc, etc to be an expert in every SN. A lot of the time its just a case of being referred to the right person, which can be difficult if the person you are seeing has no experience or knowledge of the SN your child has.

Yes, I can understand that not everyone can be an expert in every SN and that it would not be reasonable to expect the first paediatrician who saw my dd to diagnose her correctly.

But how can anyone (beyond the age of 5) be so stupid as to claim that a pain that does not show up in X-rays cannot have a physical cause? I know the man was an expert on allergies, but surely every primary school child knows that the body is made up of bone and soft tissue (and a few other bits and pieces) and that x-rays are devised to look at bones, not soft tissue? I know my son was learning about these things in infants- how can a doctor appear to be unaware of it?

Cory - I sympathise totally. I sometimes think Dr's with all their qualifications and experience, dont have an ounce of common sense.

Specialist do tend to be blinkered and cant think outside the box of their specialist subject. Although you would expect them to have some general knowledge.

My GP for example is great if you have an ear, nose of throat problem. Other than that she doesnt have a clue.

"My ds most definately has sensory issues. what im having a problem with is that sensory issues are not recognised as a DX on their own"

that's tough. Speculation about whether sensory issues cause autism or vice versa is pretty pointless - they are chalk and cheese.