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Here are some suggested organisations that offer expert advice on special needs.

SN children

jimjams quick question, if i may...

13 replies

misscutandstick · 20/08/2008 16:59

hi there
from another post you say:

"...By physiological features of autism I mean things like a dodgy gut..".

"things" then... what would they be? for instance would needing a CF/GF diet be classed as a dodgy gut IYE, and having not much of an immune system be "a barking mad one"? what other physiological symptoms would you say possibly fit in with the term 'classic autism' IYE (IE not wanting a Dx of any discription, just your opinion, please) (did I cover all backsides there??? )

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misscutandstick · 20/08/2008 17:24

just noticed that you mention "...This single gene autism is more likely to be linked to regression..." which definately happened to DS5. Not really sure of the point im making just finding it interesting to note that as 'just a mother' im totally 100% certain that my child is autistic, whilst the paediatrician looks into his big gorgeous blue eyes, blonde hair and adorable grin and says "hes charming, theres nothing wrong with him, NO he is not autistic" are we not looking at the same child? He watched the child wander aimlessly for 30mins clutching 3spoons and licking every surface. Is that his idea of normality? sorry for rambling - sometimes they convince me that im wrong (is this in order to save money or face? ) then i watch him flap and tiptoe his way excitedly towards 3 trains lined up...

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Nat1H · 20/08/2008 22:03

Sorry to hijack.
Don't let them make you think you are wrong. Even if he is not autistic, there may be something else wrong. Don't give up the fight. I am often made to think that I imagine things or am even making things up! I get home feeling really stupid, then witness it again - then feel really stupid for not standing up to them. You know your child best. Keep fighting.
eg. (sorry if I bore you).
My DS had episodes of finding breathing difficult. It usually happened when he was drinking. He coughed and spluttered and looked as though he couldn't breath. This started becoming more frequent, and without drinks. One day, he slumped in a chair and when I went over to him he couldn't breathe in, just out. I was terrifeid but just held him because I knew if I panicked, or tried to do anything else, then he would panic and stop breathing completely. He went blue, and I was just about to ring for an ambulance when he began to breath again. We spent 2 days in hospital, with me being told by stupid doctors who wouldn't listen properly that my son had a swallowing problem. He had previously been assessed by SALT for this and there was NO problem. Eventually, I got so p*d off, I discharged him myself and went home to phone our neurologist (my DS has CP). She got back to me later that day and suggested he may be having seizures. Hey presto - he was!
All I am trying to say (in a very long winded way) is keep going until you feel you have the right answer. Don't let anyone fob you off, and if you are unsure, ask for a second (or third) opinion.
Good luck.

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jimjamshaslefttheyurt · 20/08/2008 22:11

In ds3's case his 'dodgy gut' is a leaky gut. He can't have gluten or cow's milk (although he's just started to see how he gets on). He's had a lot of poo problems as well. He had repeated ear infections (as did ds1) and has quite bad eczema (ds1 had very severe eczema - he used to be wet wrapped). He's also had a seizure and I'm a bit concerned about his thirst levels.

I sound like a nutter He's been tested by Sunderland and does have the 'autistic' gut results. I think that's always been his biggest risk factor (for reasons mentioned by Derrick MacFabe in the video).

I agree with Nat. I do understand- I'm trying to get the docs to take seriously these spasm things that ds1 goes into. Videoed some bad ones today. They don't know what it is so they fob me off and say it's stimming (it's not).

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Nat1H · 20/08/2008 22:16

Jimjam - why don't you contact an organisation like epilepsy action? They could give you some advice about where to go with this. If you think he is having seizures then he needs medication, surely? Keep going - and good luck. Let me know how you get on.

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jimjamshaslefttheyurt · 20/08/2008 22:20

I don't think it's seizures tbh. They did pay attention long enough to rule them out and I do think they're right there. It's either a movement disorder or something to do with arousal (imo). It could also (weirdly but having read a paper on it by Lorna Wing) be a catatonia. But can I get anyone to even listen to me?Nah!

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Nat1H · 20/08/2008 22:30

What a nightmare. Keep fighting though.

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jimjamshaslefttheyurt · 20/08/2008 22:36

I've started videoing again.....

I do have to reply to the paediatrician who wrote to me to answer a question, but answered a completely different (non-existent) one so I might point her towards the video....

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Nat1H · 20/08/2008 23:03

Good idea. Can you find a specialist in catatonia, if that's what you think it could be, and send it to them as well?
Keep us posted.

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jimjamshaslefttheyurt · 20/08/2008 23:24

That's an idea, although I'm not sure there's treatment (and not sure I'd want it for ds1 if there was). Lorna Wing is the expert....

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Nat1H · 20/08/2008 23:28

At least you would know though. Makes it easier to accept somehow. I like to know what I'm dealing with - even if I can't do anything about it. (part of the control freak in me!)

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bullet123 · 21/08/2008 00:15

I had eczema until I was 7 and Ds1 also had it. In both cases it was cleared up with switching washing powders. I do wonder if maybe a sensitive enough washing powder wasn't around - or at least known to my parents - until I was 7, or whether I had a stronger "strain" of it than Ds1.
He had glue ear as well and for ages we put down his lack of talking (now he is VERY verbal but rather disordered) to that. In retrospect he was displaying other signs of ASD as well, but of course we didn't think of that.

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bullet123 · 21/08/2008 00:19

Sorry, forgot to add that whilst I'm not as severe, I do have difficulties a lot of the time reacting in time, or at all to things. I often can't let go of something to throw it. I know what to do and I'm thinking about it, but the throwing part of me won't work. This doesn't happen all the time, but it's not a rare occurence.
I will also not react to something a lot of the time. Eg I won't wave at someone waving, or smile at them i nreply, or react if somethign breaks. Again, not all the time but not a rare occurrence. And again I know what to do, but my body doesn't react. It's as though my mind thinks that as I'm thinking about it, that's enough.

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misscutandstick · 21/08/2008 08:43

bullet: i have heard of auditory processing skills problems, does that extend to visual/kinestetic perhaps?

Nat: the Paed just kind of smiles patronisingly at me in that 'poor-simpleton-knows-nothing-lets-just-humor-her' kinda way, and says "and why do YOU think that?" or "what would you NEED her/that for?" GRRR. the problem is, that he is very well respected here, so no-one takes you seriously if you say anything against him to another professional. EG, asking GP for another referral, "hes the best {BEAMS} what on earth would you want to change for?" i reply that i know my son is autistic and he doesnt believe me. "well, if hes says hes not..." and snorts at me!

Jimjams: DS5 is on a CF/GF diet and the difference in him is AMAZING!!! hes more alert, much less 'zoning out', loads more energy (he used to cat nap every 10mins throughout the day), hes almost stopped self-harming, much calmer, less meltdowns, and is starting to learn things (like stacking, has managed pointing twice, even managed his first sign since his regression at 14mths). Still completely non-verbal but much more interactive and eye-contact slightly better too (but still struggles with anything more than a glance, and will, if pushed for eye-contact just close his eyes!)

You mention these spasm things, DS1 (ADHD)had a few seizures whilst going thru the first stages of puberty (10y-12y)- i saw them, I KNOW what i saw (it looked like a computer crashing, and then rebooting, IYKWIM)body juddering, high pitch whine - quite scary. All the docs at the time told me it couldnt possibly be seizures... but i read later (when they had stopped, well after puberty) that it is known for it to happen to ASD kids during puberty (when all the hormone levels are at the highest and especially to kids that dont speak until after 3 (but they dont know why), DS1 was nearly 4 by the time anyone could understand him. just a thought....