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SN children

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

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Original poster

I think ds1 is the worst he's been for at least a year today.

45 replies

yurt1 · 01/03/2008 13:02

and his public meltdowns get harder to manage with each year,

he's eaten something (headbanging the pavement that's a sign) but I can't think what.

No idea how those of you with teens cope.

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staryeyed · 02/03/2008 10:02

The only reason my Ds was diagnosed so early is because I had stumbled across someone on another site describing nearly the same symptoms as Ds at the time then I posted here in the behavioural section to ask what people thought. Yurt and Davros etc told me more to look out for and I knew I had to do something so I booked with the doctor straight away who immediately referred me to the paed who diagnosed very quickly as he is a classic case.If I hadn't have seen that website or had somewhere like this to voice my concerns my Ds may not have been diagnosed yet. I feel very strongly that the 2 year test should not have been scrapped we were not offered any checks since 7 months which was a simple questionnaire which is not good enough. Anyway I'm rambling again.

Anyway as for a nutritionist I saw one that specialises in autism She is just outside London if that's any good to you.

Original poster

yurt1 · 02/03/2008 12:38

Have heard very good things about Jean Muscroft.

I think I need to start biomed again but I'm thinking (on Mandy of Mandi Mart's advice) of doing it myself. I'm going to start with some tests (although not another mouth swab- that was horrendous). Perhaps we should start a biomed support thread - there are quite a few people doing it on here.

Up at 4am again. Screaming his head off in ds2 and ds3's room and whacking their radiator (bit obsessed with radiators at the moment and he keeps turning them off so in combination with windows with massive holes in them- thanks ds1 - and no heat .... brrr) A bit calmer last night although mum came round and thought he was absolutely out of it which does point to something biomedical, whether food or the cold.

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TotalChaos · 02/03/2008 12:41

has he had any calpol or anything like that for the cold symptoms that could have triggered him. sorry last night was tough too.

Original poster

yurt1 · 02/03/2008 12:43

Oh no he didn't have any (he has to be really ill before he gets calpol plus sweetners )

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silverfrog · 02/03/2008 12:49

oh, I'm sorry oyu're ahving a tough time.

You mentioned that oyu've done a mouth swab with your ds1 which was horrendous - how exactly? I'm getting a couple of biomed tests done on dd1 at the mo (or will be if she co operates)

have to tackle a mouth swab this aft - is it truly horrible? am not looking forward to it already.

am currently trying to get her to wee, as urine samle needs collecting - not a chance. she's been up since 7 this morning, and produced nothing.

on the bright side, this does show good bladder control should I want to seize the opportunity and toilet train at some point

Original poster

yurt1 · 02/03/2008 12:55

We did the wee tests before toilet training (ds1 and ds3)- it was dh's job every time he was really good at catching it!

The mouth thing needs the child (well the one we did) to hold a piece of cotton wool like material in their mouth for something like??? 2 minutes - can't remember. The idea was it got wet. DS1 had to be held down - and of course mouth held shut - I actually don't think we could hold him down to do it now. 5 people holding him down couldn't get an x-ray.

We did the mouth swab twice but really I'm not doing it again mainly because I'm not really prepared to hold him down for that long again.

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Original poster

yurt1 · 02/03/2008 12:57

Wee, poo, blood, hair - fine, but not mouth swabs. Blood is hard but the hospital are good (although we haven't done it for years) and the holding down is only for a brief time.

I think he;s extreme though. When the hospital thought he might have a broken ankle (didn;t know because they couldn;t get the x -ray) they decided not to plaster it because they didn't think they'd be able to get it off him - if they could get it on in the first place.

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silverfrog · 02/03/2008 13:01

yep, got a swab she needs to hold in her mouth. don't think it's 2 minutes though - will check

it says 30-45 seconds, or a little longer if just held under tongue (ha! fat chance!) and not chewed. should imagine we'll have to stop her spitting it out too.

dh is out htis morning, and we're doing it this aft so that we're both here to hold her down. can imagine that it'll be a nightmare.

the urine test should be easy-ish. have collecting system (pad in nappy) but dd1 is proverbial camel. she never drinks, and have to up fluids by soup etc. Problem is, she only eats tomato based soups (and spag bol, curries, etc) and tomato is excluded pre-test...

have just been syringing water into her mouth (bribed with choc biscuit), so maybe we'll have a result soon...

ManxMum · 02/03/2008 13:12

I saw a great article on the one show last week about dogs for autistic children, does anyone have any knowledge of them and would this be a help in those 'meltdown' moments?

staryeyed · 02/03/2008 13:16

Yes Yurt I have heard very good things about Jean Muscroft. Some say that she has done a lot more for their children than Dr Heard.

In my opinion you can do a lot of Biomed without a DAN doctor. We have come quite far already although we have along way to go. Most of it is about trial and error. I always research the supps before trying them and then use the go low and slow approach (starting very low and gradually building up). If you are very scientific about your approach you can do most things without help. Although tests can highlight which supps your child may need although some tests show that supplements aren't needed and they still have an affect and vice versa.

A biomed support thread would be good Yurt.

PipinJo · 02/03/2008 22:07

This reply has been deleted

Message withdrawn at poster's request.

sphil · 02/03/2008 23:15

Silverfrog - I was expecting mouth swab test to be horrendous (DS2 gags if something unfamiliar is put in his mouth) but he was fine with it . We only had to do it for 30-45 secs though - don't think we could have done two minutes!

I'd like biomed thread too. Just trying a new combination of oils with DS2 - his nutritionist (Mike Ash) thinks he is very sensitive to the balance of fatty acids in his body (his involuntary movements/sounds become much worse if he has too much or too little. His visual processing, gaze and tracking are also affected). So we've started a regime of Vit A, Bodybio oil (flax and sunflower seed) and something called Phoscol - like axle grease, sticks to sides of cup and my fingers when I puncture capsule so he's probably not getting much! Too early to say if it's working...

Original poster

yurt1 · 03/03/2008 07:40

It probably was 45 secs- just felt like 2 mins!

How do you give the vitmain A sphil (ds1 loses all his funny eyes on vitamin A)- is it still nordic naturals cod liver oil? (which I cannot get into him!)

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silverfrog · 03/03/2008 08:29

dd1 was also fine with it

sphil, we really must meet up sometime - your ds2 and dd1 do seem so alike

we were all geared up to hold her down and clamp her mouth shut, but she just accepted it, and chewed on it like a trooper - the hard part was actually getting it back (mind you, in his pre-test briefing, dh only told dd1 that he was going to put something in her mouth for 30 secs, for her to chew - he didn't mention anything about wanting it back!)

Mind you, after the merry dance she led me on the urine sample front (3.30 she finally wee'd - she was up from 7 ) then I was due a break!

sphil · 03/03/2008 13:12

Lol Silverfrog - we had the same problem getting it back! Thank God cotton wool is white - we'd have been in trouble if it was green .

Yurt - the Vit A is a Biotics one - on the label it says Bio-Ae-Mulsion. He only has to have one drop once a day (we tried 2 but his visual skills dropped right off) and we put it in a drink. Maybe DS1 would be OK with it as it's such a small amount? Though I know he has the nose of a bloodhound . I have to say that most of DS2's visual stimming has stopped since we started it.

Original poster

yurt1 · 03/03/2008 16:00

Thank you- I bought vitasorb then found out it has the wrong type of vitamin A in it (palmitate rather than cis). I'll order that other one. One drop in juice will be fine.....

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Original poster

yurt1 · 03/03/2008 20:11

That one says palmitate as well. I've emailed Mary Megson to ask her whether that matters.

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sphil · 03/03/2008 22:23

Ah - I had a conversation with Steven about palmitate. Will look it up on GM forum and get back to you.

sphil · 03/03/2008 22:34

Right - Steven was surprised that Mike Ash had prescribed Vit A as palmitate and cod liver oil (cis), because Mary Megson's research suggested you shouldn't do this. I emailed Mike to ask him and this is what he said

"We use the Cis retinol form in the CLO as this is the form that Mary Megson found worked best for the night vision issues and that is present in the Nordic Naturals plain CLO.
The Vit A as retinol palmitate is used by dendritic cells in the gut to induce Treg cells, hence they have different forms and different primary functions. There is a question as to whether they compete with each other for primary binding sites, but there appears to be no immediate evidence of this occurring."

Atm we're not giving the CLO - MA is intending to add it back in during next few weeks. He has prescribed Phoscol and Bodybio oil (flax/sunflower seed) which apparently stops the oils competing with each other.

Clear as mud

Original poster

yurt1 · 04/03/2008 08:23

I think the bodybio sent ds1 insane (too much omega 6s?)

Can't get oils into him at all!!1

Thanks for the clarification, it does make some sense. I'll see if Mary Megson replies....

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