a cure for autism?

[AlysWho]

a friend of mine has come back from a trip to the Highlands with some exciting news for me- she met a lady who had Cured Her Son from Autism, using colostrum (first milk).. WTF? Has anyone heard of this?
I have to admit it made me very cross, for reasons I cant very clearly explain tho.. I'm not a believer in 'cures' for autism, and I'm not looking for one. I honestly believe that DD's autism is such an integral part of who she is that to wish it away is to wish her away. Does this sound weird to you lot? x

I dont know if omega oils are in colostrum Indigo all I could find was that a lack of omega 3 in colostrum possibly leads to food allergies and high levels of omega 6 possibly causes allergies in milk? Although it does say the research was not conclusive....

Colostrum has been used for a number of years as a biomed treatment.

There are numerous research paper regarding Colostrum as it is a constituent of milk, so the research covers most animals you can think of, it has been used as part of many vaccines. The best description i found as the Colostrum Wikipedia article

Looks Interesting.

Thanks for the link.........yes it does make an interesting read.

The only think that I am thinking of is if its from both animal and human?

The rest of the suppliment intake for each individual childs circumstances made an informative read too.

Gah! Cure, my arse! My boy breast-fed voluminously from the second he exited my womb. He is autistic. My girl could not get the hang of bf at all; she is not autistic. It's genetic. There's no cure, but huge improvements are possible imho.

Don't believe in cures, my kids are gorgeous, clever, funny. They don't need a cure. We have lots of coping strategies in place and that does us nicely, thanks!

If I could do anything to make DS2 not have ASD I would do it like a shot, be it cut my own arm off with a blunt teaspoon! I hate the way ASD makes him 'be' and I fear for his future, but both my boys were breastfed, and DS2 has ASD, bad eczema, asthma, a nut allergy that could kill him. Dread to think what we'd add to that list of he hadn't been breastfed!

Sounds highly unlikely and anyway human colustrum is only produced in minute quantities in the early days of bfing. Would animal colostrum be suitable for humans?!

I did see on TV a while back that giving unpasteurised cows milk (green top) is beneficial, but it needs to come direct from a farm shop from guernsey cows which produce a different type of betacasein (A2 instead of A1) in their milk from that of ordinary cows, probably difficult to get hold of anyway. Betacasein A1 is supposed to make ASD worse, but its all still being debated by scientists.

Am a big believer in fish oils though. DGS has had these since around birth. traumatic birth, born lifeless, brain damage to his motor centre. Unable to move independently and poor fine motor skills, so cant explore toys and his own environment well (a major hinderence to learning/development) yet scored 3.4 yo cognitively and he is still only 2.11 yo!

Jodianna u summed it up nicely for me! Indigo I think you've found the relevant website, but it just leaves me cold I'm afraid.
Eg 'The first thing I noticed was emotion regulation was affected. Increased tears, anger and easy frustration levels may have been a result from the initial die-off reaction of bacteria in the gut. Once the body adjusted, these behaviors disappeared'
IME living with a person with autism (and now teenage!) for 14 yrs- no given day is the same! One minute its all calm and i love you and the next its stressed out autism/teen aggressive irrational behaviour. I think this is human nature? We all have good days/ bad days? One day its all sunshine and best friends, the next it might feel like the worlds out to get us and its all SH**..!
I'm working on giving my DD the communication tools and strategies to find OTHER ways of expressing herself, helping her to understand the spectrum of emotions, and practicing different (more productive) ways we can respond to how we are feeling- and other self regulating methods.
Ok maybe I could throw some colostrum into the mix. She was, however, also Solely BF, and has an incredibly healthy diet. My NT son however rejected my boob (was I a bit stressed maybe looking after dd?), lives on as many white carbs as he can! Fruit and veg-'5 a week' he says! Healthy tho.
Life skills and self esteem rather than Cure for us please.x

But even if you breastfeed you only produce colustrum for a few days don't you?

So this is nothing about whether or not you breastfeed. It is about whether you want to try supplements to improve your child's life, and then it's about whether or not this a good supplement to try.

We discuss omega fish oils and Epsom bath salts and behaviour balance and GF/CF But for some reason colustrum supplements and GAPs diet are off limits.

I totally don't get the attitude that you don't want to cure your child. But that's fine. If you have no interest In curing your child than you don't care whether this works or not.

However I'm surprised there aren't more of us investigating and interested in anything that might work.

Indigo, you may already be aware, but I can recommend some yahoo groups for those into biomed, in particular autism-biomedical-Europe. People on it are profoundly knowledgable about all things biomed. I love it and have learnt loads.

FWIW If I had a choice I would cure my child's Autism in a heartbeat.

OvenChips - actually I haven't done any research into biomed yet

It's on my 'to-do' list......

But it is disappointing that we never discuss it here. (Because I get so much good info from here)

Can you point me to a good starting point?

Indigo,

I agree that for some reason biomed gets linked to "wanting to change your child" - and that whole cure/improvement debate that has been done a few times recently...

I got started on biomed via the archives here - search back a few years and there are some really interesting threads. next, I read lots and lots, and then took the plunge, really. like most interventions, you need to jump off into the abyss at some point (eg there is no concrete data that says SI is any good, but it helped dd1 enormously. same for AIT and BABO as well - not tried with dd1, but ykwim)

some books I have found useful are:

The GAPS book (very interesting)
Children with starving brains
enzyme theory
the book that convinced me to try gf/cf - nice easy read, also contains recipes

for suppplementation, I used a nutritionist from this company. I have found him to be very useful, not at all gung ho (if anyhting a little conservative), and very knowledgable.

we did supplement dd1 for a few years. she had a few (non invasive - spit and urine) tests, and we found out some surprising stuff form the results, such as she seemed to be completely incapable of absorbing vit B form her diet. and her omegas were out of whack, despite a very balanced diet in this respect. that, plus a general multi vit, and a spectrum of b vits (a complex, plus a couple of the bs individually too) formed the basis of the cocktail we gave her daily, along with gut bacteria. so nothing too weird or out htere, really.

I am not sure what actual benefits it brought. we halted the regime a couple of years ago because I wasn't sure what it was doing for dd1 (although it was certainly doing her no harm), but this was as much my fault as anyhitng. we didn't have regular appts with the nutritionist, and we didn't tweak and tinker at all. just stuck with the first approach (we did change one of the gut bacteria, as it didn't suit), as we had other stuff to concentrate on (statementing, ABA etc)

I have been muttering lots about going back to see the nutritionist this year (more than hlaf gone already! how did that happen?!) as since dd1's bowels have cleared up so much - massive maturation at the end of last year - I think it would be easier to tell if it was all having an impact - before it was a bit like the boy with his finger in the dam...

dh usues enzymes with good effect, and when dd1 had an infringement recently, we bunged some in her and she had no ill effects whatsoever. many people use them effectively as an alternative to the gf/cf diet.

If I could take away what my child has and it took sawing my right arm off I would. I am VERY interested in the suppliments you have all tried and used. It was an extrememly interesting link that Indigo put up. The bit where it said excessive tears etc because the bad bacteria is coming out is understandable. You give up smoking and you are s**ty as hell, if you give up drinking you are going to hell and back as it is for drugs. So that part of the passage I can understand and take on board. I need my caffeine and sugar lol or I cant function properly due to a crap diet and work overload.

My child wasnt BF as I couldnt. Both my other children were for 3 weeks till they were rushed in hospital for dehydration because I cannot produce enough milk :( And so I didnt BF my boy and yes it is looking like he has autism.

As thinking rationally instead of with my heart, children with autism lack certain vitamins/body minerals yes? Maybe there is something in colostrum that although only a small amount from humans is enough to balance NT children at birth but not enough ooomph for a child born with SN. They might need double the dose so to speak

However I am pumping omega and other vits in him and to date I am not seeing any benefit at present but will continue as these take time. Probably when I actually get a diagnosis to confirm exactly what he has then I can focus on the right ones for him iyswim. The thing is though if there is an improvement wonderful! but if you take the suppliments away it all reverts back to the way it was so I dont class them as a cure because deep down the autism is still there.

Just my thinking for the day

There are a number of things going on here and, to be honest, much of the highly emotive language being thrown around irritates me.

Would I cure DS2? In a fucking heartbeat.

He is not defined, made who he is, by his autism. His autism makes him anxious and frightened. It makes him unable to enjoy things he loves because he is so fixated on small issues. And maybe I could find a pill and a therapy but why is that so much better than finding how to reduce his autistic behaviours through other methods like biomedical or colostrum or whatever?

But he did not have asd when he was born. He regressed. And perhaps having met the happy calm smiley boy he was before his regression gives me a different perspective - a perspective which the subsequent 14 years has soften but not quite removed.

If you and your child are happy then great.

But if I or anyone else investigates ways to reduce the meltdowns and the gut problems and the hand biting and the distress then I think we are entitled to do that.

And it does not mean that I love my ds2 the tiniest bit less than you

Great post Pagwatch.

I dont want to "cure" ds1

I just want him to find life easier IYSWIM?

I would cure dd1 in an instant, if I could.

I would happily get rid of autism form our lives - both for ehr sake and mine (and ours as a family).

I have learnt a lot from having a severely disabled daughter. I have had to. But I would cure her of her disability without doubt.

I would take away her anxiety, and her insecurity. I would take away her language delay, and I would give her the ability ot relate to the peers she is so desperate to play with. I would take away her inability to attend clubs and extra curricular activities, and I wish she could have the same opportunities that dd2 has.

yes, without autism dd1 would be a different person. she would be a child who knows how to play. a child who is not scared to do anyhting wihtout adult support. a child who can cope without having me by her side for every waking second. a child without such deep insecurities that she cannot answer a demand (any demand) placed on her without incredible amounts of support and encouragement. a child who would allow herself to enjoy things without constantly worrying about some facet of it. a child without such deep obsessional phobias that at times just getting through the day can be hard.

from a selfish point of view she woudl be a child who can attend dh's birthday party htis weekend (dinner party - big, important birthday), rather than having to exclude her, for her own comfort and happiness.

biomed has lessened all of the above a LOT, for dd1. we no longer have wildly varying days. sure, like any child she can have good days and bad days. but her bad days are logical now, and we are not often second guessing. there is no see-sawing of emotions, happy one secomd and screaming the next, like there used to be.

I was searching through old photo files on my computer last night, trying to find side profile pictures of me and dh (don't ask!), and came across a folder of films taken when dd2 was born. I chuckled through the cute gurgly ones of dd2. and was profoundly moved by the films I had of dd1 at that time. she was 2.6/3 ish in the films. she could not talk clearly, had little language, could barely walk properly such was her clumsiness. she hand flapped, and bounced off the furniture (literally). in a film of her at the playground, where she was trying to climb on the toddler climbing frame, she looked like someone you would see learning to walk again after a severe spinal injury - very jerky movements, clearly not having full control of her limbs.

we started gf/cf shortly after these films were taken. and I will be forever glad we did, and thankful to all the posters on MN who took the time to answer my queries at that time, and point me in the right direction.

dd1 is already a different child, because of these interventions. and I do not regret that for one second.

I would take away ds' autism. But if I can't do that (Which I can't) I would take away the barbaric way he and his future are being treated by the people who are paid and responsible for it.

I find it hard to seperate the two, because the latter makes the former harder for him. I don't know how hard it would be with better provision, understanding, earlier intervention and opportunities, but it is bloody hard for him now, and looking to get harder. This is not something that I believe needs to be inevitable, even with lifelong autism.

Indigo, sorry wasn't trying to imply you should know about biomed.

Would second Silverfrog recommendations. Also, the UK based website Treating Autism is a good one for learning about all things biomed.

And the Yahoo group I mentioned health.groups.yahoo.com/group/Autism-Biomedical-Europe/messages is full of people who know loads and incredibly helpful with it.

Thanks for the link ovenchips have joined but got to wait membership conf first.