DeepThoughts, TotalChaos, everyone educating me about dairy and ASD...

[hereidrawtheline]

I have really taken on board what you have all said about the connection between dairy and ASD and last night drove the point home. DS always has milk many times each night and he is also suffering very badly from chronic constipation for months now. Last night as a treat after dinner he had some ice cream too. Last night was worse than every other night. He demanded a new bottle of milk around 12 - yes - 12 times. From 8pm to 6am. We didnt sleep at all. He wet through his nappy. He came into our bed. He got up and down straining to do a poo on the potty (he is potty trained and will not go in nappy if he is awake, the nappy is just for while he is asleep) it was hell. And trust me it is not an isolated incident.

I already (ironically) decided yesterday to try him on rice milk as he has had that before and liked it but as I didnt have any in the house last night it was cows milk he had. He had 4 pints in one day/night. Please dont judge me I know this is a totally unreasonable amount of milk for him to have but we had nothing else to give him and he gets beyond distressed when he wants his milk. Anyway yesterday we were snowed in (literally! we have a long gravel drive and couldnt get out!) so we had to give him the cows milk. But I have told DH to come home from work today with lots of rice milk and as of today I am cutting it out. The milk is obviously a self perpetuating problem and no doubt is contributing to his ASD which has got much worse over the last several months (leading up to his DX)

Long story short - I have been combing through MN history looking for scientific stuff to back me up so I can show the relevant people in his life (DH, Doctors etc) I have found lynnesweb.co.uk which is fantastic!!! (thank you!) Are there other sites I can look at - other case studies, any scientific research, anything? I want to really educate myself on what to do so I do it right.

Many thanks!

HereI - DS used to get through 4 pints in 24 hours on a regular basis - so no worries about judgment! I put a stop to having milk in the house completely - he took to it much better than I predicted (DH doesn't drink milk at all, and I just got whitener for my coffee). I still let him have it at nursery. Interesting DS bowels were the reverse - dire nappies, v. loose stools etc.

In terms of scientific backup - I would look at the Sunderland ARU (autism research unit) website and google for casein free diets. Sorry I can't point you to anything specific.

oh I've googled and found this:-

ncp.sagepub.com/cgi/content/full/23/6/583

also try googling Dr. Cade

In the past people on here have mentioned that there are separate yahoo groups for autism and "biomed" interventions - you might find more info on there.

Thanks very much TC. Does casein free mean dairy free? I will google it in a bit so no worries if you dont have time for an explanation!! Thank you for the link & extra info.

DS's constipation has been going on a long time and has been horrible. He has gone through whole weeks where he cant sit down his bottom hurts so much and in the awful nights when he has strained to do a poo he wont let you touch his belly its so hard.

Would you think rice milk was acceptable? That was my first idea as he has had it before and liked it.

Well I have ordered my urine test kit from Sunderland. Only hitch is I cant put him on rice milk or anything until they get their sample which wont be until Monday coming (as long as post etc moves smoothly)

I am happy I have resolved to get him tested but very disappointed I cant cut the milk out as of tonight as I really feel its just adding to our whole agony as a family and for him especially. How am I going to cope with this til Monday?

We're onm dairy free duiets here also. The interesting this is that those of us naturally intol to casein are those with either dx'd asd or definite traits of.

casein is dairy protein, more common than lactose intol but not as well known so I can presume many people are thinking they're intol of the wrong thing; common belief will telly ou goats milk is a no no, in actuality thats not necessarily true, the protein is a bit different so you can give it a go- works for ds1 and ds3 beautifully.

if you want meal ideas once you get going do yell: also Alpro products are fab- as nice as the milok based options (yoghurts, puddings etc).

I firmly believe in a link, at least for some people. I know how I am if I have milk- quite severelky imapired, as if looking through glass but unable tor each out and touch people, iykwim?

(Oh ds's and myself dx'd casein intol bfore asd an issue btw)

and I man those of us in my family LOL

peachy meal ideas would be great, thank you! We are veggie - no meat or fish but obviously we do have dairy! He is unable to sleep (nap) today after not sleeping last night because of his constant waking for milk. I dont know how I am going to hold out until Monday.

YOu don't have to have the test you now- most people just cut it out fro 2 weeks and see what helps.

Calcium and vitamin d are your biggest issue obv. I'd go for a two week exclusion diet and if that helps try reintroducing goats milk as you can have cheeses, yoghurts etc that way.

Holland and Barrett do tofutti cheese spread that is vegan, my ds's love it; also alpro yoghurt comes in natural so we use that in curries, mussaka etc- all of which work well with veggie versions also (was veffie for 13 years).

With the exception of standard cheese you will find excellent replacements easy to source these days. Beware though of using rice or soya as the main milk for under three year olds (not sur what age your child is?) as it is low in fat and ot recommended. Look at formula options perhaps? You can get soya formula in tins in supermarkets, and it has much sugar removed these days so you won't get the tooth decayy that the older kids received (ds1 being one of those)

I tried DS with some soya milk but he didn't like it, so I didn't persevere. Never really thought of rice milk TBH. Since you are dealing with the experts (Sunderland) anyway, I'ld ask their opinion. I'm probably not the best person to advise compared to others on this board, as DS doesn't have a completely Casein Free diet - I just severely restrict milk and yoghurt, and allow him cheese, as milk and yoghurt cause him problems, and cheese does not appear to. I was considering going down the Sunderland route last year - but then he didn't get the anticipated HFA DX- and as his language/social communication improved a lot, I thought I would just leave the restrictions as they are, if it aint broke don't fix it etc...

I'm sorry that you anticipate a grim weekend in the run up to the testing - make sure you get some time to yourself, and sometimes wine and chocolate make life a little more bearable.

thanks for the good advice re: rice milk for DS. He is 2.6.

I have thought a lot about it and I want to get the test done. I have learned recently that I have been making things harder by seemingly taking some short cuts and I just want to be told in black and white exactly what his urine shows so if there is something else major that shows up besides milk I can tackle that too.

God I have a migraine (usual for me) DS is in his room trying and failing to get to sleep the house is a total mess and has to be cleaned up by tomorrow as we rent and have a quarterly inspection due. I slept 2 hours broken up last night clinging to the side of the bed. I just can not believe I have to clean! What a bitch!

Oh we rent too but you msy be doing better than us as a quarterly isnpection takes 2 weeks to get ready for

I can unerstand the test route- we were going to do it for ds1 for gulten but opted for DIY only because of costs (all ds`1's dla seems to go on repairs )

oat milk is very popular among a lot of veggies. Also watch out for soya products that arent fermented such as tofu. See www.soyonlineservice.co.nz/