We've done gluten free. It was actually fairly easy in comparison to what I thought it would be. It's such a common intolerance these days there are lots of substitute options. What I did find was that a lot of gluten free manufactured products other than the basics ruin any benefit by being very high in sugar, so that's something to watch out for. In the end we found it was actually yeast that was our problem. Gluten intolerance was a symptom of yeast intolerance, because yeast rips tiny holes in the gut allowing the gluten heroin-like peptides to get into the bloodstream. By dealing with the yeast issue, we've been able to slowly bring back in gluten as long as it is not wheat based, so oats etc. are okay. We've left off the wheat because it feeds yeast only like cane sugar can. We also started doing some biomedical therapy, which included a zinc supplement, Fermplus which is a heavy duty probiotic (much better than inner health plus - they're not that good, just easier to get a hold of), a cup of homemade yogurt a day, giving her a glass of Keifer water a day and putting 1/2 cup of Epsom salts in her bath. We've seen huge improvements with this. We've gone from the hitting, biting, off her head meltdowns to a meltdown now being a grrr look on her face, the stamping of feet and sometimes when she's really losing it the F-word. We've heard this word a lot more lately because of issues with school, but she snaps out of it pretty quickly and apologises without needing a cue. Not all of it of course is from the biomedical therapy and diet changes alone, but they have played a very big part. I can absolutely tell when someone like her aunt hasn't thought about it much and given her a donut - lots of F-words.
E is currently on a GFCF diet. His diet is really limited though. I think his behaviour has improved without gluten (more attempts at speech) but I'm not 100% sure. We're trying to reintroduce gluten at the moment (if we can get him to eat anything new) and I'll watch his behaviour. We're aiming to do the coeliac blood test if he eats gluten for 2-3 months but I really don't think he's coeliac, and if he has issues with gluten it will be from something else that can't be as easily tested. I also want to start seeing some autistic savvy natropaths etc to help guide these explorations in diet and detox. As for dairy that seems to do shocking things to his poo so that's why we've cut for the moment. I've been reading some interesting research in gluten free, dairy free, low GI diet success... adding links to my blog as I find them.
He just had a blood test and stool sample this morning so hopefully we'll find some answers to his terrible poos and also see where is health is at with limited diet.
We had Matilda allergy tested when she was 3 years old, and had some IgG and IgE intolerance testing done as well. She showed an allergy to milk, and high levels of intolerance to oats, bananas and almonds. 4 weeks after taking those things out of her diet, and she started improving with her speech. It was uncanny. Her poos went from 6-8 runny ones per day to one formed poo per day. She also started gaining weight. We also started her on Udos oils and probiotics at that time. I spent so much money on vitamens and green replacers only to have her reject them that I only did the oil and probiotics as well as the detoxifying baths.
On my phone so will come back and do personals later.
Just a poor me post really. I've had a pretty bad few days. Kids usually have one day a week at fdc but our wonderful carer is on maternity leave, dh had a bucks weekend this weekend and I'm just exhausted. Ds has been really difficult, change in routine maybe? Not getting time with dad? Don't know.
He's got this thing going on with doona covers, he wants to spend all day hiding inside one with me, I don't care if dd is having a nap or something but I can't exactly do it all day. He keeps having meltdowns over it. I've made him a little cubbyhole out if a portacot, pillows and blankets. It's keeping him happy for now but I know it's going turn into a massive showdown cos dd wants to play peekaboo and get in with him. He's refusing to eat anything but rafferties garden apple, pear and mango. He's yelling a dd and myself all day. I'm so tired. I just want some peace.
Wednesday we are meant to be getting our first diagnosis and I know what shed going to say. She's only seen him twice for an hour each time and he was at his best both times. I think she just thinks I'm not being a good parent.
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Last edited by loulabelle; April 18th, 2011 at 08:35 AM.
Weeks like that are very emotionally tiring. Do you have a video camera or does your still camera have video option? Perhaps you could record some of the behaviour to show as "evidence". It really annoys me when professionals have to make a diagnosis based on an hour of time, and usually the kids know to be "on" and behave their best just to complicate things. Video though, is hard to deny. I know they weren't sure with my DD either until I showed them a video of her melting down and lining things up. They suddenly went from unsure to "oh yeah, that's SO autistic!"
I did something horrible when it was time for M's ADOS assessment... I gave her 100mls of organic apple juice. From doing elimination diets and detoxing and things like that, we found that apple juice.... no matter if I made it at home or bought the more preserved juice out there, but any apple juice took her back a few steps... she wouldn't be able to communicate very well, and was 100 times more likely to have a meltdown.
Now, I knew from experience that it exacerbated her behavior, or exaggerated it I guess... so I thought I would do it...
I felt bad afterwards, I mean like I was making things out worse than they were, but I guess I'm glad I did because we had some awful times after the diagnosis without apple juice.
I stopped doing the things that helped DS1 cope a few days before the assessment, that way on assessment day he was him. He didn't have a huge meltdown, but did have a series of minor ones, he also displayed a heap of the traits too. Our assessment was over about 4 hours, DS1 was not compliant and was difficult to engage.
Need some help (sorry for no personals) DS1 loves to smell things, no biggie.... except that he likes to smell bums. He pulls down pants and puts his face right in to peoples bums and also spreads cheeks to smell too. How can I stop that? It's really embarrassing, he's done it a few times to me in the supermarket etc!
First, I would write a social story about how that wasn't appropriate and that people wont like it. Then I would offer an on-tap alternative. My DD keeps a strawberry chapstick in her pocket that she can get out and sniff when she wants a fix, but your DS might need something a little stronger. Perhaps a tea tree oil one from the health food shop??? Linseed or star anise have very strong smells too, perhaps you could make up a water spray infused with those (like the little ones you can get to travel) that he can spray to get the smell.
Ec- ds also smells everything, he has tried to smell my bum a few times. He's been right into my wheat pack and without even really thinking about the asd side of things I put some wheat in a sock with lavender oil and tied it up with a hair tie. It's quite strong smelling but he loves it. He's been rubbing it in his face all day and even took it to bed. He prefers it warmed up, double whammy for the sensors I guess. Maybe something like that?
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We dont have a sniffing issue, we have a tasting issue. Ripley has a bad habit of biting people's clothes. He's been doing it mostly to DH lately, esp if we are out and about somewhere. We dont even notice he is doing it, just all of a sudden Dh feels his face bump up against his back and then look down, there Rip is with a mouthful of tshirt. Bit weird but kinda of funny in a silly way lol
We finally got our diagnosis report and letter so now I have two lots of paperwork to post off: #1 is the Autism Advisor Program stuff and #2 is the Carers Allowance medical report to the Paed. Hopefully we can get some sort of money happening by 2nd May as thats our OT assessment ($200, ouch). I probably should get onto the military about special needs recognition; we are desperate for Rip to have his own room as he is hard to settle sharing with his brothers and frequently night wakes which disturbs the others. It will give us leeway for automatic 4 bedroom classification which will be a huge load off my shoulders (esp because Ds1 goes to primary school next year and does not need to be sharing with his 2yo brother!)
Freya, that would be awesome, I think getting that stuff all started is a great way of getting help for you guys. The carers allowence is actually good to get and you get back paid to the diagnosis. You should get a health care card for him as well, that way you can get reduced rates on somethings.
Thanks for the suggestions will have to try some of those. A social story is a good idea too... we have one of those about the wind (he's terrified of the wind because we lost our roof in the last storm). We have the tasting/biting issue too but we have a huge range of toys he is allowed to bite/chew and also ice, he LOVES ice
Freya, that would be awesome! RE Carers allowance, I got back paid quite a few months (2 months prior to the assessment!). I rang up to make sure it was right LOL.
Good luck Loulabelle! I think some video is a great idea. Remember, being worse is a good thing at the moment.
Our son was a shocking sleeper, woke every 2 hours for the first 14 months then slowly went longer stretches till sleeping through at about 19 months. But since then he always sleeps unless he's sick so we're very lucky. He will wake up early regardless of a late night though too.
I'm off to meet some ASD mums and kids on Thursday! Looking forward to getting out and meeting some new people, and not being stressed about how E reacts. He's terrible going into new places.
I was thinking if trying one of the playconnect playground for asd kids, but I feel weird because he's not officially diagnosed yet even though they say it doesn't matter. Let is know how you go.
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I was just telling my H I feel the same way with not having a diagnosis. But we both need the socialisation and I don't have the confidence to deal with screaming mess on the ground for a first meeting with a regular playgroup at the moment. It was okay when we did that at home with old friends but it's harder with new people.
Early Kids school holidays are hard. We have done the social story and doing something special in order to compensate... like a scavenger hunt or something outside together... when they are young they don't always understand why there is such a thing as school holidays. M doesn't understand why people want to take breaks from school...
Weeks like that are very emotionally tiring. Do you have a video camera or does your still camera have video option? Perhaps you could record some of the behaviour to show as "evidence". It really annoys me when professionals have to make a diagnosis based on an hour of time, and usually the kids know to be "on" and behave their best just to complicate things. Video though, is hard to deny. I know they weren't sure with my DD either until I showed them a video of her melting down and lining things up. They suddenly went from unsure to "oh yeah, that's SO autistic!"
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