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Positive ASD intervention story

(20 Posts)
DeepThoughts Fri 11-Jul-08 11:59:34

For 4 years I have been so worried about my ds. It seemed that he was struggling with so many things (other than learning colours, shapes numbers etc...). He was a late talker (2 years 8 months), before speaking he just used a grunting sound. He had no gestures or babbling and he did ignore other family members most of the time.

He was also the worst sleeper. Unable to settle himself and even when he did sleep he woke within 2 hours or so. He had really bad fears, he was frightened of everything. He refused to look in mirrors, touch paints (or other messy objects) and would not try foods.
It also seemed that he was getting worse month by month.
I was so in despair. After seeking professional help, which meant pretty much just observing him every 6 months I decided to try making a few adjustment to his diet.

...Honestly after removing only a few things (mainly chocolate and cows milk) you would not believe the change in my little boy. Almost every concern that I had has improved or diminished. Also his eczema, hives, itching, congestion and constipation and regular bouts of flu have gone.

He still has quite a way to go to catch up to his peers socially, but he is now making remarkable achievements every day.

I have just started creating my own website as a way of sharing this story in more detail.
Whilst I know that small diet changes will not help all children I feel that if it can help even just one child then it is worth trying.
The website is very new and I am intending to add a guestbook so that comments can be left.

www.lynnesweb.co.uk/index.htm

Also if anybody can recommend any reputable place where I can purchase Epson Bath salts (preferably a large bag). I would be very grateful.

TotalChaos Fri 11-Jul-08 12:04:06

Hi and thanks for the post and the link to your website. My DS is 4.4, and has language delay (allegedely probably not ASD, but time will tell). I found that cutting down his milk made a big difference to his stools and had a positive effect on his general alertness.

DeepThoughts Fri 11-Jul-08 12:14:34

Great News! Its strange, but no medical proffesional ever recomended for us to try to change/cut down his milk intake. We even ended up in casualy twice with severe eczema flare-ups.

I have since read so much that cows milk can induce so many problems in children.

I am planning making a large list of unusual quirks that my ds had (most of these have gone since the diet change). I hope that this may help others.

misscutandstick Fri 11-Jul-08 12:25:41

TC: I agree the absence of milk from DS5's diet has made the exact same differences. Hes more alert and deliberate, and his nappies are more 'stable' too. DS5 is 2.1 and since 7wks ive struggled trying to keep milk in him - i even went to Docs... and was told "its just one of those things" WELL ITS NOT IS IT???

I agree with you too DT, i imagine that not everyone will benefit from it - but its soooo worth a try if your DC has problems with concentration type issues.

Thanks for posting. XXX

misscutandstick Fri 11-Jul-08 12:27:18

blush forgot to mention DS5 is preDx with autistic traits. so probably on spectrum somewhere.

DeepThoughts Fri 11-Jul-08 12:44:23

Every once in a while ds still has a strange reaction to a food/drink. I then see just what he was like before we made the changes.

He starts rambling excessivly in a squealy voice (not directed at anybody though), walks into walls/doors and cannot hold eye contact at all. Its almost like he is drunk. He also gets blotchy skin and begins itching again. Then the severve tiredness steps in.

One of the things that I think he has reacted to is Orange squash. Not sure the type as it was from a fair, but I think it may have been the Aspartame.

MannyMoeAndJack Fri 11-Jul-08 13:38:51

Sounds as though you've made a breakthrough so well done and hope your ds continues to make progress smile.

We should buy shares in a dairy because my ds drinks so much milk! In his case, removing cow's milk wouldn't make any odds to his difficulties but he's never had any bowel problems or gut problems ever and is amazingly robust (I always joke that he's 'normal' from the neck down!).

Bricks Mon 14-Jul-08 10:13:55

Hi,

I am a strong advocate of dietary changes and my son is on a GF/CF diet and he was a different child when the dairy was removed and now is making huge progress by removing the gluten. Please see the attached link for the salts - http://www.dietaryneedsdirect.co.uk/cnb/shop/dietaryneeds-direct

Seuss Mon 14-Jul-08 11:56:58

Does anyone have a child that was affected by gluten but not dairy? My ds doesn't have much dairy products anyway and I haven't noticed any difference when he hasn't had anything (although he hasn't completely abstained for more than a week I don't think) but I've never cut out gluten. His diet is quite limied(but not too unhealthy) so I really don't want to experiment without good reason.

KT14 Mon 14-Jul-08 21:26:44

This thread is so interesting, so pleased for you Deepthoughts, must be a massive relief to be making such progress.

I have a 2.11 DS1 who is pre dx but suspected HFA. I've cut out all fruit squash drinks in the past week and it already seems to be making a big difference - eye contact and interaction have all noticeably improved and we've had countless new words today (he has a language delay of approx 11 months so vocab of maybe 250-300 words.) It's possibly all a fluke but I'm going to stick with it and see if it continues.

Seuss, same as you re gluten - DS1 exists on diet of pasta, cereal, bread, potato products so would really struggle to cut this out without good reason.

Interestingly, a good friend of mine works in autism research at a top uni - she has worked with many children with severe ASD and generally found that modified diets have had little if any effect on the majority of children she's encountered (although clearly not all children as Deepthoughts proves!), but often monitoring the diets give the parents a sense of control and ability to "do something" for their children.

Personally I think it's worth trying if it helps even one child with ASD..

Seuss Mon 14-Jul-08 21:34:17

KT14 - I'm definitely going to be looking at his diet during summer hols. Things have slipped slightly towards the end of term (too many orange drinks for a start!)but hope to get back on track. I think you've got a point about giving the parents a sense of control - if nothing else comes of it at least I'll know I tried everything I could. This does tie in quite nicely for me with school working on their healthy eating project this week so hopefully if they can pique his interest I can work on that.

DeepThoughts Tue 15-Jul-08 11:27:29

Bricks - Thankyou for the link for the Epsom Salts, I have ordered them now.

Now I just need the Omega 3/6 and I am looking at the eye q chews. Has anybody tried these? www.equazen.com/listproducts.aspx?pid=47&prodgroup=14

silverfrog Tue 15-Jul-08 12:37:44

I had dd1 (3.11) tested at Sunderland last summer. Her results came back as off the scale for gluten intol, and inconclusive for dairy.

She is now GF, and pretty much CF too (Sunderland results say that although the testing didn't show up any major issue, that doesn't man there isn't one, and we have found through trialling that she does better with severely reduced dairy intake)

If she does ever get hold of gluten or dairy, I know straight away, through her reactions, both physical (flushed cheeks, red ears, black circles around her eyes, and disgusting poo) and behavioural - she doesn't necessarily tantrum as such, but gets very emotional, and so where normally she would accept eg "more singing later" (after the hundredth rendition of Twinkle Twinkle wink) she would get very tearful and sob as though it's the end of the world.

She has, since starting her off GF/CF become much more aware of everyhting around her, and is far less off in her own world. Her speech has beome a lot clearer, and she has recently begun to recognise emotions - she now comes to say " Ouch, I'm sad" when she has fallen over and hurt herself.

silverfrog Tue 15-Jul-08 12:43:06

Oh, and for those whose children are existing on gluten products - dd1 was too, but we changed one thing at a time to GF, and have found fairly good substitutes for everyhting except bread. We even found the same pasta shapes, so itlooks just the same to her.

we had no problem at all in switching dd1 over, but I realise we are probably very lucky to have had it go so smoothly.

The other things to look out for are sweetners (they creep in everywhere) and the biggest problem is MSG - found in practically everytihng in one form or another. htese two things go along with the GF/CF diet, and it has been harder to keep clear of those than gluten or dairy. It does mean that you have to make everything yourself, but again, if I slip up and give d1 a fruit bar which has "natural flavourings", then we see the results...

Seuss Tue 15-Jul-08 13:39:18

re. changing one thing at a time - good idea, think we can handle that.

KT14 Tue 15-Jul-08 14:05:38

us too - going to continue with the juice-free diet for another week and then knock something else out next week. Out of interest, can anyone tell me where can I get gluten free pasta? It doesn't seem to be on the Tesco website and I'd have thought they'd stock it. Holland and Barrett maybe?

silverfrog Tue 15-Jul-08 14:28:23

I have bought GF pasta in Tesco and am sure I've had it online too. Sainsbury's do some in their Free From section (ah, maybe that's where it is in Tesco online too?), and Holland and Barratt do too.

hth

Bricks Tue 15-Jul-08 17:55:50

Hi,

You can buy gluten free and dairy free products in Sainsburys and Waitrose. This includes pasta, bread, crackers, biscuits, cakes, chocolate, pitta bread, rolls, ice cream cones, cereal and ice cream(swedish glace). The brands to look for are Village Bakery, Livwell, bakers delight, barkat, dietary soecial (DS), Doves Farm, Ener G , free to enjoy, free From, Glebe farm, Mrs crimble, Natures Path, OK 5, Organ, Safe 2 eat and Trufree. I definetly agree that you should have the tests done, just for your own peace of mind. I had the tests done when my son was 2 which was October 2007 and he wasn't diagnosed until Feb 08 (Although we knew he was ASD in July 07). we changed the diet immediately for 3 months and he changed from an estranged child who I could iron in the same room for 2.5 hours and he never looked at me to a an affectionate child who looked for me when i left the room, improved his eye contact, wanted me to sing to him and plays catch and does puzzles with me. Two weeks after the change he waved bye bye at nursery for the first time ever. It was as if he came into our world - every story is different but he eats all the foods he had before - as I have found a subsitute for pretty much everything, it's painful on the wallet but worth it. He loves his cereals and bread although I always toast it but he now doesn't know any different - the issue is when you are out and about - so we have to be prepared as sandwiches and cakes are out - but jacket potatoes, chips, roast dinners are favourites anyway. Best of luck whatever you do - but if you want to chat off line let me know? He is still ASD no speech but has become so vocal since we made the change and is now learning sign language. XXX

KT14 Wed 16-Jul-08 20:00:04

thanks so much Bricks, that's really helpful info. Going to get prepared this week and switch over next week for a trial gf fortnight.

Am amazed by the change in ds1 in the week since we took out squash drinks, today he has been looking at me to share jokes, playing with his baby brother, initiating conversation, (allbeit very basic!)actually calling me mummy (but it comes out "bubby") and making strong eye contact. I've poured the remaining squash we had down the sink, I don't know why it took me so long to click that it may be an issue for him. Fingers crossed this continues..

Bricks Fri 25-Jul-08 21:36:18

KT14,

The step by step is the best approach - let us know how you get on

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