Shall we start the biomed thread then?

[staryeyed]

We discussed doing it and some of us thought it would be a good idea so shall we start it?

only if you explain what you mean?

it's about alleviating some of the symptoms of autism (well, in our case anyway) through the use of vitamin/mineral supplements and enzymes, and a whole lot of other stuff that we'll get to in due course no doubt... the theory being that if all these levels are out of kilter, the knock on impact is huge.

We have just had dd1's SIgA levels tested (low) and also did an organic acids test. The results were mostly incomprehensible to me but upon interpretation it turns out she is deficient in all B vitamins and also needs more magnesium, as a starting point.

So, we now have a lengthy list of supplements to add to her food - here's hoping all the tablet crushing will be worth it!

One interesting thing which the organic acids test threw up is that dd1 is also copper deficient - the nutritionist said this was quite rare? anypne know what it might indicate?

I know the biomed approach has changed the life of my best friends' DS.

She has also taken him to see doctors in America, after discovering that his body is full of heavy metals.
He now also spends time in an oxygen chamber each evening.

His speech and concentration have improved dramatically.

Silverfrogg apparently copper balances zinc so maybe too much zinc supplements?

hmm, she's not on any supplements at the moment (just about to start with the list gained post tests), and there's been no mention of zinc at all, either way.

Will have to have a google once the dds are in bed...

I am interested, just starting out with all this, find the concept of biomed a bit overwhelming... but I would like to know more.

Me too

I'm keen. DS2 has made great strides since starting a biomed regime but is still very very sensitive to changes in diet. It frustrates me that I don't know more - we're under the supervision of a great nutritionist but I find it very hard to retain what he tells me - it's so complicated . Have great deal of admiration for those of you who are doing it on your own.

silverfrog thanks for the xplanation.

I would like to know more about this too. My 3 year old ds has deteriorated quite rapidly over the past month. He is having a very long regression, his eye contact has worsened, his speech has become only (unclear)echolalic and singing, he has started screaming at me to request things, and has become more moody/unpredictable. .
I am so worried about him.I wish there was a way to halt his regression. I thought he was making big leaps forward, I am losing my little boy more and more.
I would really like to learn about this.

Ok how about we introduce ourselves and or DC's and then what are their current issue sand what things we have tried. (With as much or as little detail as you like)

Im 27 mother to one boy, Live in London and work PT.
Ds is 2.10 diagnosed ASD at 2.1. non verbal but very lovely.I believe he has been ASD form birth /before as he didn't develop normally. Had some speech an lost it. No imagination but getting better with social things. He is on a Gluten Free Casein Free Soy free diet and supplements.

Current issues:
Fear of certain noises hoover hair dryer(this is very recent within the last few weeks)
Teeth grinding- drives me mad.
Quite spacey
Fear of the bath
some obsessive behaviour (at the moment its Baby Einstein DVDs)

Have been quite successful with various issues
sweating (casein Free)
constant colds (Transfer factor)
Eye contact ( Cod liver oil-used to actively avoid now is much better)
a lot of diarreoh and bloated belly (enzymes)
sticky eye (Tranfer factor and vitamin C)
dry skin (vitamin E)
Socialisation doesn't scream at people or just completely ignore them(not sure)
Concentration (cod liver oil)
Tantrums (gluten free I think)
No longer lines up stuff (not sure)
No longer running up and down constantly (Zinc I think)

I have not tried any of the bio-med approach...I am 35 and ds is nearly 4, I also have a dd. we don't have a dx, but ds is getting a fair bit of support, from salt, early years support teacher, one to one at nursery and multi disciplinary team for his "asd traits".

Fear of certain noises hoover, hair dryer, electric mixer, hand dryers....
Fear of the bath, hair washing and cutting
obsessive behaviour, some stimming
hair twirling, usually mine and generally wants to touch my hair play with it(drives me mad)
some other "odd" behaviour, hand flapping, running back and forwards
used to hold hands over his ears a lot, when there were any sounds he couldn't stand, namely tuneless singing(not mine honest), me telling him, or dd off (but does this less and less)
his language is delayed, he had a fair bit of echolalia type language but I think he is getting passed that now.
fear of swings

so far I have tried no biomed approaches, though ds does get a daily dose of vitamin c, because he likes it.

oh deeeja, sorry you're having a hard time at the moment . I know my dd has times where she really seems to regress too, and it is so disheartening, especially when she seems to be making such good progress normally. I have noticed, though, that her regressions are at their worst either just after she has made a good leap forward (which can be worrying as I then think she will lose the new skill/words/coping level) or just before she progresses in an area (which is equally worrying, as I start panicking about plateauing etc).

Dd1 also gets like this just beofre she comes down with a bug too, and she is sometimes unsettled for weeks before she finally gets the illness/infection.

So, to introduce us.

I have 2 dds. Dd1 is 3.7 and ASD. Dd2 is 1.2 and so far NT.

dd1's main issues:
fear of bath (in fact wary of all liquids, to the point that she doesn't drink. We're lucky if we can get 50ml of ANY liquid down her on a daily basis)

hates any sudden noise - both the volume and the unexpectedness. She cannot even bear people sneezing!

language mostly echolalic, sometimes appropriately so (eg "let's go home and have some lunch" when i go through from sitting room to kitchen) but quite a lot of general irrelevant chat too.

obsessive behaviour with books - she uses them to communicate, stim (flaps the pages) and also stim verbally. She memorises whole stories, and uses them as her comforters, so when upset, I get to recite the whole of her favourite book. Good that it works, bad that her favourite book takes 20 mins to tell. and then I get to start again...

lots of running up and down - she is constantly on the move, although she is able to sit and concentrate on a task also, so not that bad.

On the other hand, she is very sociable, and wants to communicate with people, but just doesn't know how to

Imo, her biggest issue is language - if we could get that sorted a little more her world would really open up.

she is GF/CF, and cannot have citrus either. I suspect a salicylate issue, but am going to sort out the newly suggested regime of supplements first.

we are about to start on:

probiotics (general SIgA levels and suspected yeast issues)

vit B (whole range - she is extremely deficient)

vit E (to reduce lipid peroxides (? - anyone know what they are?))

magnesium (not given a reason why, but organic acid testing showed it was needed

My DS is 5 and ASD. He has had difficult bowels ever since birth, and for the last two years I've had him on probiotic called Threelac (from the US, via the internet) which is supposed to sort out over-growth of candida in the gut. I also give him a fish oil every day (in his juice, poor boy) called VEGEPA , and I'm pretty sure this has helped his concentration (he is very hyperactive, does not stop). I did try gluten free for a while and it did improve his poos, but the threelac seems to work too so now he has normal bread. I did also try DMG for a while but to no real effect (I'd read some articles about it being good for ASD kids). He is addicted to marmite, so I think hopefully his B vitamins are sorted that way!

Ancient- we are still considering Threelac. Ds suffers from yeast. At he moment we are combining Olive leaf extract (viral and bacterial) with Grapefruit Seed Extract for yeast saw some improvement with OLE alone- offered a teddy his bottle- never even acknowledges it normally.

Apparently noise sensitivity can be due to yeast- that's why we are concentrating on this at the moment. People have also mentioned about The listening programme and the like that also help with these issues. Has anyone tried it?

Deeja- Im sorry you are having a hard time at the moment. Are you doing any interventions at the moment?

The biomed stuff is really overwhelming at first. A really good book to start is "Children with Starving brains" quite expensive but I managed to get it ordered in to our local library. It gives a good over view of what it is all about and what supplements most of our children need. It also gives and overview of the possible tests that can be done. It made things much clearer for me.

Pipin

For vits there is a good website called nutricentre.com (delivery has been a bit slow) We use Biocare vitasorb multivits and Biocare vitasorb minerals. I cant say with either of these I saw any dramatic changes but they are full of all the vits that Dcs might be lacking.

For fish oil I would go with Nordic Cod liver oil or Eskimo fish oil (depending if you want the Vit A or not). At the moments we are trialing Sr clement's Cod Liver oil its cheaper but I'm not convinced its as good.

If you want links let me know

When selecting vitamins its best to go for ones with the least fillers and the most absorbable which is usually liquid vits or gel caps.

Oh and be prepared to wait ages for Breakspear appointment.

remember that these things don't work overnight sometimes it can take ages to see any effect.

Here is the links

multivits:
www.nutricentre.com/Products/Products/PID-BC25530.aspx

Minerals:
www.nutricentre.com/Products/Products/PID-BC13915.aspx

Nordic cod liver oil:
www.nutricentre.com/Products/Products/PID-NN54785.aspx

this comes in different flavours.

Eskimo oil:
www.eskimo3.co.uk/Default.aspx?tabid=263&List=1&ProductID=272
you can probably get this from local health food shop and I have never ordered from that supplier.

You dont have to buy these brands, they are quite expensive, but the minerals and vits last quite a while. Its sometimes worth shopping around to find cheaper products. We give 10 drops multivits and 4 drops minerals.

Have you had any advice about going GF/CF?

go to: www.treatingautism.ik.com/home.ikml this is the only autism in the UK that works with parents who are treating their children's ASD's. They have a yahoo site attached where parents get together to learn.

the caudwell trust funds some parents for their biomed, including the very expensive tests, etc.

fill out their application form and see what happens. More and more the research out there is pointing to autism being a metabolic disorder an autoimmune disease no different from lupus, MS or diabetes.

If that is the case, optimum nutrition is key. HOwever, i have to say that just throwing pills at your child wont make them healthier. If they arent absorbing vitamins and minerals, having them pop pills wont make them any better, its like you have to peel back the layers of autism very slowly and at least for us, it started with excellent nutrition and avoiding allergens, and nutritionally void foods which unfortunatley includes many of the carb based gf/cf foods.

My son, and apparently many other children will crave what is NOT good for them. My boy used to eat the glue from the carpet at his school cause there was gluten in it. He was getting his "fix".

He was a junkie, he needed that buzz. If you look in the opioid theory (paul shattock, etc) you will find more info on this.

b12 injections are used for pernicious anaemia in older people.

get your application to Caudwell. They are wonderful people there. they want to help.

YOu must give them a breakdown of what you are going to out of pocket in doing biomed, for at least one year. so do a break down of tests, consults, and supplements, etc. WE estimated it was costing us £17,000 per year and that was a very conservative estimate.

it takes about 3 months to hear back from them, so sooner the better. get yourself a practitioner. Jean Muscroft (google her) in Cheshire is supposed to be pretty good, and Jonathon Tommey in London (Autism File) is supposed to be good too (both nutritionists). We had all our initial tests done on the NHS including blood lead levels, organic and amino acids, testosterone (important)

liver, kidney, general haematology, thyroid, stool samples for yeast/bacteria and parasites and a lot more.

at the very least they should do a complete blood screen and find out your child's blood type as well.

hope that helps

Hi MMDDWW- I was wandering where you had gone again. Are you joining our thread?