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DIY biomedical intervention

(64 Posts)
Neveradullday Fri 20-Mar-15 05:35:08

My ds (3) has recently been dx as asd. It is considered mild and we have therapy lined up. I have looked into the biomedical intervention and recently started him on a gfcf diet. Problem is we live in a place where we do not have access to the right practitioners to assist us with this. I noticed the gfcf diet seem to be having some kind of effect (he is more with it, less echolalia and less hyperactivity) so I am thinking of doing this properly. He is already on vitamins, omega 3-6, and calcium supplements. I am looking to introduce probiotics and enzymes (unfortunately I am still trying to navigate the whole birthday party/playdate treats). Has anyone started a similar intervention with their toddler on a self starter basis, and if so what worked for you? I don't want to screw this up or give him the wrong supplements. Many many thanks.

Lesley25 Sat 21-Mar-15 07:49:57

I went with a good quality multivitamin (childrens complex powder) and omega 3. I also did vitamin d childrens spray. It's difficult not to get too sucked into the people trying to sell you a "cure", but I have a medical background so I didn't push supplements I had never heard of or had the smallest positive study associated with it.

zzzzz Sat 21-Mar-15 09:52:27

I think you're dotty to play around with your sons diet in such gung-ho manner. I would be aiming to maximise nutrition for the best possible outcome.

If you really want to persue exclusion diets etc then you should see his GP and ask for referal to an expert. (Dietician? I imagine it would be privately so £££)

SuddenlyEveryPartOfMe Sat 21-Mar-15 12:10:53

There is nothing gung-ho about using vitamin supplements, nor about a gluten free diet (gluten is not a food group). Dairy free I suppose should be approached with a little more caution, due to calcium intake, but otherwise fats etc can all be gained as part of a good diet.

There is a lot of evidence that a gf/cf diet can help a variety of conditions.

If you are already seeing an effect of gf/cf then I would concentrate on that. No need to rush anything - it's a marathon, not a sprint. There is also little point in making lots of changes in a short space of time - if you do see any effects (whether positive or negative) then you won't know what to attribute it to.

SuddenlyEveryPartOfMe Sat 21-Mar-15 12:11:58

Oh, and for us, maximising nutrition meant excluding gluten and dairy.

It's quite hard to gain any nutritional benefit from food which you are completely unable to digest.

Neveradullday Sat 21-Mar-15 12:49:03

Thanks for your replies everyone. For us, it is not about saving money and not going through Doctors etc but we genuinely don't have access to DAN practitioners or anyone who specialises in this type of intervention. I don't regard GFCF diet as a harmful diet, especially if I compensate with the right supplements. Just interested in hearing about what worked for other families and how they went about it.

ouryve Sat 21-Mar-15 13:19:25

I do appreciate that GF and/or CF can be helpful for a small number of people, despite lack of evidence to support it, but you shouldn't need to compensate for a diet with supplements, though hmm

What do you hope to achieve by giving him enzymes?

Paleoish Sat 21-Mar-15 13:42:22

I didn't think there were DAN practitioners any more? Are they the ones that like chelation? That's the type of thing I'd count as dangerous, not simple dietary interventions like GFCF.

Personally I think it's better to concentrate on nutrient density rather than supplementation - so a diet built on meat, seafood, veg, fruit, cultured dairy, healthy fats and bone broths.

Paleoish Sat 21-Mar-15 13:42:57

Oh and eggs!

Neveradullday Sat 21-Mar-15 13:46:21

My understanding of enzymes is that it aids the digestion process. I am not looking to start everything at the same time of course. I have put my DS on the vitamins/omegas 6 weeks ago, and started him on gfcf 2 weeks ago with some results but also some transgressions unfortunately. I am merely looking into how probiotics and enzymes might help support gfcf and heal the digestive system. His gfcf diet is healthy since it is mostly about freshly cooked meat/fish/veggies/fruits/water. I also suspect he might have an intolerance to phenol (has dark circles under the eyes, bloated stomach, and some associated behaviours), but phenol is in a lot of his favourite fruits so instead of cutting everything dead, I am interested in how we might circumvent this.

Neveradullday Sat 21-Mar-15 13:47:59

God no, no chelation!

SuddenlyEveryPartOfMe Sat 21-Mar-15 15:41:56

We introduced enzymes very successfully after almost 8 years on gf/cf. and about 3 years after a 'healthy' gut (imo). It really did take that long for the gut to heal.

Now we don't do gf/cf, although a lot of our cooking still is, after so long of course, and use enzymes to aid digestion. Diet is now normal, as long as enzymes are taken with the meal.

SuddenlyEveryPartOfMe Sat 21-Mar-15 15:45:43

In our case, ouryve, vitamin/mineral supplements did not compensate for any kind of diet. How would giving a childrens multivitamin each day 'compensate' for removing gluten hmm right back atcha.

Good nutrients should always be gained from diet, but there really is no harm (and it is widely advised from weaning age up) in giving vitamins, in advised doses.

Neveradullday Sat 21-Mar-15 16:02:25

Suddenly, which signs made you think the gut had healed? What kind of difference did it make to your child's condition? As I said, after 10-15 days even my husband commented on how much more sense my child was making when we were trying to have a conversation. I am hopeful that with the therapy and diet, we can make progress.

zzzzz Sat 21-Mar-15 19:11:00

There's nothing gung-ho about vitamins or gfcf diet, but if you live somewhere where we do not have access to the right practitioners to assist us with this. and you are administering vitamins despite not really knowing what to give and are worried you might give him the wrong supplements and asking on the Internet, then I'm sorry you aren't bring very wise.

Funnily enough I really think supplements help my DS who sounds similar to OPs Ds though mine is 10 now.

ouryve Sat 21-Mar-15 19:37:57

In our case, ouryve, vitamin/mineral supplements did not compensate for any kind of diet. How would giving a childrens multivitamin each day 'compensate' for removing gluten hmm right back atcha.

I don't think the snark is warranted, thank you. I was commenting on something the OP mentioned, namely "I don't regard GFCF diet as a harmful diet, especially if I compensate with the right supplements."

Bilberry Sat 21-Mar-15 20:09:42

This all sounds a bit close to quackery to me. How do you know if it was the diet that affected his behaviour since you have only recently introduced supplements? How do give enzymes? Anything orally would be destroyed before it reached the gut. A gluten free diet doesn't just remove gluten; you are changing their diet not just removing gluten. So long as you don't tell me you are detoxing...

Sorry but I am truly a sceptic (and a scientist). I do think diet can made a difference but there is an awful lot of snake oil salesmen out there. I think a trip to the GP and a referral to a dietitian would be better.

Neveradullday Sun 22-Mar-15 16:55:15

Agreed a nutritionist would definitely be a good idea, and one which I will organise if we get a sense that the diet is making a difference (maybe in a month?). I get all the scepticism and right now I can't argue either way as I don't know if it will work well for DS. I have however discussed with ASD professionals who have treated kids for whom this helped. The supplements are multivitamins and omegas which are formulated for children. And I won't approach enzymes without quadruple checking. Ultimately, I posted on MN as I am looking for similar experiences. I just treat this as one of the many sources of information I use before making a decision, certainly not as prescription to run with. So if other families have gone down this road, I would love to read about their experiences.

Bilberry Sun 22-Mar-15 17:23:55

Sorry, my last post was a bit strongly sceptical. I get we are all looking for answers and sometimes the unexpected can give better results than we would expect. I have to admit Ben Goldacres book 'Bad Science' actually made me more sympathetic towards homeopathy; not because I think it works but rather for its strength as a placebo. I would, however, be very cautious about all Internet advice. I think it is best to consider it a 'sign post' and checked to see if it could be backed up by more reputable sources (and common sense) before I try it out. Even more so if it requires me to spend any money.

ouryve Mon 23-Mar-15 12:24:18

You need a qualified dietician, not a nutritionist. I could legitimately call myself a nutritionist.

lorrikeet Tue 24-Mar-15 12:01:07

Have you read Natasha Campbell McBride's book 'Gut and Psychology Syndrome (GAPs)' ? it sound similar to what you're doing, and may provide some useful advice.

I am aiming to start my son on her recommended introduction diet ( he's got learning difficulties and behavioural issues) ; we're introducing new foods (eg. bone broths and fermented foods .. a bit like Paleoish is suggesting) slowly before we start cutting stuff ( grains, processed foods, possibly unfermented dairy) out.

I'm on here today looking for anyone who has experience of implementing this GAPs diet.

I'm afraid I don't think you'll get much support from mainstream GPs or dieticians in terms of a therapeutic diet to help with ASD, or any other special needs / learning difficulties, although I do know there are many people on the special needs thread who have had successes with changing their children's diet.

Have you looked for a nutritional therapist (rather than nutritionist) or naturopath in your area?

Neveradullday Tue 24-Mar-15 13:18:06

Thanks for the pointers re dietician V nutritionist. I haven't looked yet but very much planning to. My DS is showing encouraging signs that this type of nutrition is working. He says something new every day and his problem behaviours (hyperactivity, echolalia, chewing non food items etc) are slowly but surely tapering off. Still very early days though. Let us know how you get on Lorrikeet! Hope it works out.

Randonnc Wed 25-Mar-15 17:57:26

Neveradullday This board is not the place to discuss biomedical intervention. There is however plenty you can do... If you are on Facebook, then look for Facebook pages of "treating autism", also treating and the American website has lots of additional info on supplements, diets and biomedical interventions. Good luck with it. You are staring early and on the right path.. smile

Randonnc Wed 25-Mar-15 17:59:41

Oh and don't waste time going down the mainstream/dieticians... When it comes to biomedical treatments through mainstream healthcare professionals. They have their place but not when it comes to treating autism. England is way way behind rest of Europe, let alone USA.....

PolterGoose Wed 25-Mar-15 18:14:46

Message withdrawn at poster's request.

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