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

[yurt1]

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.

[ancientmiddleagedmum]

poor you Yurt - hope no-one tutted at you during the public meltdown as always think one do am going to lose it with a tutter! Weekends are harder anyway, I find. No breaks, long days. big hug!

[yurt1]

A few turned around, and one car stopped (!) but I don't think they would have dared tut :-)

He's headbutting everything, walls, the pavement, the bannisters, doors..... hard enough to bruise.

[yurt1]

He's definitely not feeling pain properly- and he's just insane and very very compulsive. I'm sure it's a food reaction. Just can't think which food. UNless he's eaten so many apples he's gone into phenol overload or something.

[yurt1]

yes- he bounced continuously for about 4 weeks and now won't go on it and screams if anyone else goes on it

[staryeyed]

Yurt you mentioned that your Ds head bangs with Gluten, I know you have problems getting supplements into your Ds but is there any way you could sneak an enzyme into his food or rub it into something he really likes. My Ds has tantrums that seem to correspond to Gluten (really bad when I had put him back on for the coliac test) Whenever he eats something he shouldn't I smear his favourite biscuit in peptizyde. If you think its apple there is also No fenol (we haven't tried that one but others say it works)

BTW did you hear about Chris Heard leaving Breakspear?

[yurt1]

NO why did Dr Heard leave???

I have no fenol - bought for the very reason, but cannot get it into him (spent ages melting chocolate etc to shove the enzyme into- no luck). I really want to try some supplementation again but I'm getting nowhere.

[staryeyed]

I'm not sure of the exact reasons for him leaving I've heard a few theories. We are gutted as we wont be able to see him before he goes if he hasn't already left.

As for the supps apparently with some you can cook them into food although you would have to check with the manufacturer. You've probably tried this but incorporating it into your ABA programme with something hugely reinforcing?

[yurt1]

My friend has moved to a DAN doctor whose also a gastroenterologist.... But I can't remember his name (she was under Dr Heard, although she hadn;t told me about his leaving- she may have swapped anyway). I can get his name next time I see her if you like.

The trouble with adding anything to food is that he finds is and eats round or refuses the food. Even tasteless stuff like melatonin.

[yurt1]

BUt yes its defintiely sensory pipinjo - he;s jus been waving 2 tea towels in front of him utterly out of it. Even ds3 was saying 'mummy look at what ds1 is doing' he doesn't usually notice.

It's usually food that messes up his sensory stuff though.

[staryeyed]

Yes please Yurt.

So you cant even cook it in?

[yurt1]

Nope - he notices, nibbles like a mouse and eats round it or refuses the food completely. He has an amazing sense of smell (I think he uses smell to make sense of his world).

[yurt1]

ahhhh he's getting a cold and is very bunged up - wonder if losing his sense of smell has made the world a strange place today (he's been using it gradullay more and more over the last 2 years).

[yurt1]

Not sure about gluten there are other things he reacts to- last time he was like this it was peanuts.

Type Defeat Autism Now into google and check out a UK practitioner there. They take a biomed approach. Lots of supplements, possibly diet, blood tests etc.

Oh I tell the other kids to stay on the trampoline if he's carrying on, but ds2 is out today. NO way will ds1 go on there though.

[yurt1]

no allergy- they just sent him mad!

Unfortunately not NHS funded....

[staryeyed]

Pipinjo not NHS but you may be able to get a grant form the Caudwell trust.

[TotalChaos]

sorry it's been such a trying day.

[magso]

We had a difficult week 2 weeks ago with ds, and then he came down with a sore throat. Looking back I can see he was offcolour, (he can wear his feet raw without noticing but he is very intolerant to not being right!). So I hope that its just a blip for ds1 also!

[staryeyed]

I haven't got a DAN doctor. We saw a good nutritionist who got us started.

The first step would be to try a Gluten free Casein Free diet. You can get urine tested form Sunderland university for £60 which will indicate whether your child will benefit from the diet. We also took put soy after reading that it can also have bad effects.

We started with simple good brand multivits and minerals and Cod Liver oil- make sure you get a mercury free brand.

We then got a hair analysis done that showed low levels of Zinc which we addressed with supplements. We have tried some supplements that have been very good and others that have had no noticeable effect. The best thing is to trial and take note of any changes.

We are on the waiting list for Dr Heard but I'm not sure we will see his replacement. we may go to Jean Mushcroft instead.

So far the positive effects we have seen in the last 9 months with Ds 2.10 ASD:

No longer sweats for England
Lost his red cheek and ears
Eye contact has improved loads
His diarrhoea has reduced loads he still gets some now and then.
concentration levels have improved.
No longer has a constant sticky eye
He used to always have a cough or cold
He used to regularly have long tantrums at the slightest thing Now he has a quick moan.
He no longer runs manically up and down the room.

He still has no spoken language although his understanding has improved somewhat.
He is still hard to engage and is in his own world a lot.

The Caudwell Trust can fund for supplements, tests and consultancy.

Do your research! There is an biomedical book called children with starving brain that gives a good overview and yahoo groups you can join where everyone can ask questions and discuss their experiences.

Biomedical is not exclusive and I believe can benefit other interventions such as ABA etc.
There is loads more info bit I don't want to go on too much so if you want any more info just say.

[VeniVidiVickiQV]

Bugger yurt. Thank you for taking the time to post on my feeling sorry for myself about DS thread earlier - especially when you've had a day like this.