not to hijack threads - my son

Sorry to be posting similarly, but... I didn't want to hijack someone else's thread.

Asperger's Disorder -- typically diagnosed later in life than other disorders on the spectrum, persons with Asperger's Disorder usually function in the average to above average intelligence range and have no delays in language skills. Deficits appear most often in the areas of social skills, concentration and coordination.

Ohhhh dear. The more I read about this, the more it sounds like what my son has. But what do I DO about it? How can I help him learn to cope with his... "off-ness?" How do *I* deal with things like inappropriate behavior with someone like this??? So many questions, and so few answers.

For those of you who haven't heard, my son is 10 years old with above-average verbal, reading & logic skills... but a somewhat marked lack of SOME social, and most coordination & fine motor skills. He had an MRI scan done last month to rule out tumors & other truly horrifying things & that came back fine. We have an appointment at the end of this month with a developmental therapist who should hopefully tell us exactly what we're dealing with.

Our latest issue has been hitting. He gets upset with his little sister for things like when she talks to her dolls or whistles constantly, and hits her. Not hard enough to really hurt her, but I still can't allow this. And the SLIGHTEST thing can set him off into a full-blown tantrum. What do I do with him? I love my kiddo, but some days he is truly a handful.

Update - 6/29

My son finally got in to see the developmental specialist this morning, and he says he's 95% sure that this is what we're dealing with. He says that because the lil guy shows absolutely NO signs of food-related distress he doesn't think that a gluten-free diet is the way to go for now. Rather we're being sent to an Occupational Therapist for some sessions to help give the lil guy some coping skills to learn to deal with his frustrations & some of his learning issues.

So it looks like this is what we're dealing with after all, and we can finally start getting him the help he so desperately needs to learn to deal with everyday stress. And at least for the time being, we are "off the hook" as far as changing his diet goes My lil guy is absolutely ecstatic about this... he was looking forward to some of the new foods we'd found to try, but was NOT looking forward to giving up so many of his favorite meals!
love,
mom

 

Eliminating gluten has made all the difference in the world for me and my oldest child (sugar, too, but gluten causes the worst problems). I'd start with an elimination diet and see if that doesn't help in a very big way.

 

Refined sugars are extremely limited here, but I haven't tried eliminating gluten yet. I've had a few others recommend trying it too though, so maybe it's time to give it a try. Is it 3 weeks, or longer to be sure we've gotten it all out of his system? Also, I've heard the horror stories of how tough that makes cooking. Do you have a recipe book or website that you use? At this point even if it doesn't help, it can't possibly hurt to try it, right?

Thanks Mamaboogie
love,
mom

 

it's not too bad to go gluten free/casein free once you get used to it

THE book to get for gfcf and autism is ::special diets for special kids:: by lisa lewis. lots of kid friendly ideas, and even some that kids with oral defensive issues will eat

the last dan conference really gave a lot of attention to the specific carbohydrate diet, which is also gluten free. there's a website called pecanbread that gives lots of doable recipe ideas

also, might want to look at sensory integration issues with your son (although we've seen a dramatic reduction in that kind of thing since the diet change)

another book ::social stories:: by carol gray. beautiful visual ways of dealing with interpersonal conflicts/dilemmas in a way that aspie kids can "get"

 

awwww.... just lost my post!!! ARGH!! I'll come back and add the bits I forgot... it was a very long reply


I have a few cookbooks, but none I'd highly recommend. Since we also have numerous other food allergies, I have to adjust any recipe we use anyway. It's best to just start experimenting. Cooking gluten-free was very intimidating at first, but now it's not that big a deal. Eating out is more difficult, but there actually are restaraunts with gluten-free menus nowadays (Outback, for one) and I have a gluten-free dining guide that helps a lot. I cook with a lot of Chebe bread mix, arrowroot flour, and quinoa flour. Since my oldest is also allergic to rice, we can't do most of the available gluten-free products or flours. If you can do rice, try an asian grocery for gluten-free foods and flour! I get most of our ingredients from www.glutenfreemall.com - even with shipping costs, it's still cheaper than buying locally at our one and only health food store with the outrageous prices. Bette Hagman has some cookbooks and flour blends out that I think are probably the best available. If you use her flour that contains garfava (garbanzo and fava bean) flour, make sure to add a drop of lemon juice to get rid of the beany taste.

some other websites I like to reference from time to time:

http://www.gfcfdiet.com/ - My family is not casein free. we are mildly allergic to dairy, but it doesn't cause us the same problems that gluten and sugar cause. Mostly just runny noses and skin irritation if we eat too much of it. But this is the best website for explaining about ingredients in food with hidden gluten and what to look out for!

http://users.bigpond.net.au/allergydietitian/fi/foodintolerance.html - all about food intolerances and how that can affect different people.

http://members.ozemail.com.au/~coeliac/det.html - recipes

I have lots more...

beware recipes with oatmeal in them!! Oats do not contain gluten, but are processed in plants that also process wheat products. I had to test to see, and my family does indeed react to the trace amounts of gluten from cross-contamination in domestic US oats (yours may or may not, the verdict is still out on that one as everyone is different). Apparently, there are some oats from the UK not contaiminated with gluten, if you can find them, and there are cookies and things made with UK oats that do not cause us to have a reaction.


(edited to remove sig and save space)

 

okay, here's some more...


don't go cold turkey. some kids have scary withdrawal when going gluten free too fast. We started by eliminating obvious wheat, no bread, no pasta... When I saw how much it helped, I took it a step further by eliminating barley and other gluten-containing grains. And then the last step was eliminating all those other ingredients like malt and caramel color and "food starch" etc.. I allow us to slip from time to time, I want my children to recognize how certain foods make them feel so they can choose for themselves not to eat it. Now we eat absolutely no gluten at all, and my daughter's scary fits have stopped. She still has tantrums from time to time, but they aren't like what happened before we started working on her diet. She doesn't go around breaking things, hurting herself and other people, she can actually listen to me now when I try to talk to her when she's in a bad mood... I think you may know what I'm talking about, those fits she used to have are nothing like a regular tantrum, and didn't respond to any of the regular ways of dealing with tantrums, either.


(edited to remove sig and save space)

 

and...


don't try to go substituting gluten-free breads and pastas right away. They are not the same as the stuff made with wheat. Give it some time before you start with the substitutes or you really won't like them at all, and may have difficulty getting your son to eat them.

 

updated in 1st post... brought this one up from the history so I didn't have to start ALL over with explaining, hope nobody minds
love,
mom

 

our pediatrician told us that he didnt think that the gfcf diet actually did anything, but if. we. wanted. to. it. wouldnt. hurt. anything. it's been the best thing we've ever done for our asperger's syndrome son, seriously. our ped is one of those old school guys who should already be retired. i cant believe his attitude about the diet.

i talked to another mom, locally whose son is 2 1/2. after gfcf for a few days, he felt pain for the first time ever~that's a big deal for kids who headbang, etc. and he's a lot more verbal now, yadda yadda.

any healthcare professional who doesnt reccomend at least a 6 month trial of gfcf for any kid on the autism spectrum doesnt know what they're talking about, imho. read the book _unravelling the mystery of autism_ by karen seroussi. it's a pretty good explanation of why asd kids cant digest gluten and casein properly and why it causes autistic type traits when they are on a diet that includes gluten and casein.

good luck!

 

ps, OT should be able to give you a sensory diet to deal with some of the sensory integration dysfunction issues. hope all works out for you and your child

 

not all kids, even not all kids with autism react the same way to foods. All I know is that eliminating gluten has totally changed my life, and greatly improved the quality of life I am living as well as my child. I have a friend with a son who has Aspergers, and his problem is dairy moreso than gluten, while dairy doesn't cause us the same issues at all. But gluten is in everything, literally. Just about anything you buy packaged or pre-made has gluten in it. Anything with sauce or gravy is usually made with wheat (though arrowroot flour makes superior sauces and gravies). Any meat that has been marinated likely has gluten in it. How can anyone know if it's a problem until they eliminate it? The allergy tests often don't show up a sensitivity to gluten. Even the celiac tests are not very accurate. The only way to know if it's a problem is to eliminate it for a month and then slowly add some back into your diet to see what happens.

 

Yeah, he said that it couldn't hurt to try this, and to be sure that if we did to come back & talk to one of their dieticians about how to be sure we were trying it right. But he said that because my lil man shows no signs of distress from foods and never complains of any stomachaches or anything at else, he felt that our energy would be better spent trying things like therapies first.

I'm not ruling out the idea of trying this at some point. I will definitely try this before I ever consider any of the drugs that were discussed as "last-resort" measures. But at least for now his reasons for not jumping right into the new diet did make sense.

My husband, as unbelievable as this sounds, is actually in favor of still going ahead and trying this, gluten first and dairy second (one at a time) just in case it MIGHT help. But he agrees too that we ought to take things one at a time so we don't stress the lil guy out all at once. So it looks like we're putting this idea on the back burner for a few months, but DH wants to try some diet changes this fall.
love,
mom

 

eliminating gluten was my last ditch effort to avoid medicating my child. It had gotten that bad... I was grasping at straws. In the process I discovered that I, too, have issues with gluten. Didn't know how bad it made me feel because I always felt that bad. And, it has helped alleviate many of my other allergies to the point where I can actually tolerate some things in moderation that before caused me major problems!

 

I'd really recommend trying the gluten free diet. The best thing we did to help our sons autism was a gluten free/ casein free diet...doctors over here don't advocate it, our consultant said that " If you want to waste your time with it, it's up to you"....but the results we got from it have made it well worth it.


Just to mention that I have read books in which children are cured by these kind of dietary interventions, that isn't my experience, but Hamish noticeably improved eye contact and speech skillls about two weeks after starting the diet. Even his teachers noted the difference.
The most commonly available book in the UK actually advocates the cold turkey approach, having done that, and spent a night with a child literally crawling up the walls, I would say gently gently.

 

Above was the real Moominmamma speaking who is currently cheese. (edit to keep good post-dm)

For my two cents worth on this issue...

I was against the whole idea of the diet when Hamish's diagnosis was confirmed. Having worked with disabled families in the past, all too often it seemed like over-anxious parents desperate to do anything to stave off the feeling of helplessness.

However, when Hamish was about 6 he caught a bug at school. Coming out of the classroom at the end of the day, suddenly we had projectile vomiting. Literally everything came out. He slept for a few hours and then woke up. He started speaking in sentences instead of disjointed phrases that he parrotted from tv shows -(me and the mamma were quite often "really useful engines"), and he was making eye contact, sitting still and even the perennial nettle rash was under control. Oh, the cuddles we had that night without him squirming and squiggling -perhaps the diagnosis had all been some horrible mistake. And in the morning, he felt a bit better and so we did the sensible thing -we gave him a plain piece of dry white toast for breakfast. And within 30 minutes the new Hamish was gone.

I went to a talk shortly afterwards by Paul Shattock. He's a bit of a maverick in the field of gut & digestion related disorders and has fallen foul of the UK goverment for his scientific support of Gulf War Syndrome and the Hill farmers who've suffered symptoms similar to GWS and Autism, as a result of goverment sanctionned sheep dipping. As he'll tell you- "He's got no answers, but he's got some bloody good questions" Since then, Hamish has been on the diet, and while he's never returned to being as lucid as he was for one night, the change is dramatic. PS - with dairy, the recommendation seem's to be to keep them dairy free for at least a month, and then introduce goat's milk to see if there's a reaction. If none then there are certain breeds of cow such as Jersey which are lessl ikely to trigger the allergies.

http://osiris.sunderland.ac.uk/autism/index.html

 

my younger brother (though i think i come from an entire family of undiagnosed auspergers) did EXTREMELY WELL on an elimination diet. he went from 2nd grade level skills at 13 to average level skills in one year. he wasn't diagnosed with anything, to be honest, my mother isn't the sort to "allow" that. she never wanted a label, labels tend to make people forget the kid under the label, you know? but she's worked wonders with him, advocating his needs, changing his diet, helping him to really socialize.

 

I felt so sad after reading this part of your post....sort of like a glimpse of something and then gone....hugs to you and your little one.

 

Thank-you for your wonderful hugs. but please don't feel sad.

I've told the story in full because for us it really brought home just how much was going on in there, and which Hamish had no effective means of communicating.

When Paul Shattock talked of the gut wall being lined with a barrier in some autistic kids, preventing some of the good things getting through and transforming others into morphiates - in theory some autistic spectrum kids are permanently swinging from being as high as a kite to going cold turkey - it all just came together.

We'd been sad, and then we been angry. But we channelled that anger. We stopped fighting the need to label Hamish, because when we did that suddenly all the support and help was automatically there. Instead we put our energy into keeping Hamish on diet and in mainstream education, rather than shunted off into a special needs unit somewhere. We'd home educated in the past, but we knew Hamish would only learn to socialise if he was out there in the playground and the classroom, with the so-called normal kids.

Yes we still meet healthcare professionals and educators who have very rigid views about autistic kids, but half an hour spent in the joyful innocence of Hamish usually means that they see the same wonderful child as we do.

 

Greetings Mamas! I'm the mother of three babies, my youngest son, Gunner, is six years old and was diagnosed with Asperger's a year ago. Since then I've done so much research on the topic (gotta love the internet) and I want to share with you what has worked wonderfully for us. First off I want to say I've not tried a gluten free diet; it just seems like a lot of work and like all other good foods, just too darn expensive for my budget. However, I have found that supplementing his magnesium and B6 conteracts the bad effects of gluten. As far as I understand, gluten causes "leaky gut" syndrome in some people, where important minerals are not able to be absorbed. I've found replacing those key minerals much easier to incorporate into our life than getting rid of all gluten products. ( i love my whole wheat bread, can't give it up) Magnesium also helps with eye contact, transition skills, behavioral problems, sleep issues (bed wetting especially), nervous issues and agression. (It has also cured my restless leg syndrome, so now I too can get a good's night sleep)(http://www.autism.org/vitaminb6.html ) I give Gunner "Natural Calm" a fizzy magnesium drink in fruity flavors and he loves it. You can find it at the health food store (ask for samples first) Since starting on the mag. supplements Gunner has become the calm, relaxed boy I've hoped he could become. His tantrums are less severe and come less often, he's able to follow three and four step directions now without distraction and he's stopped hitting his sisters and me. I strongly suggest ESE classes and an IEP that includes a strong emphasis on social skills. (Gunner's IEP includes teaching him how to become aware of his "episodes" approaching so he can go to a quiet spot until it passes) Of course routine and structure are vital to AS kids; transitions are so hard on them. "Social Stories" is a great program used at some schools to help children recognize emotions thru facial expressions and body language; Gunner has made great progress with this program. AS kids can't comprehend that not everyone shares their mind; that we all think and feel differently. They need to be taught to recognize these differences in order to socialize effectively. OASIS is the Bible on AS, I suggest getting involved with them.(http://www.udel.edu/bkirby/asperger/) and another website I've found helpful (http://www.autismindia.com/article3.htm) I know this post is LONG, and I apologize; I just have so much to say on the topic. Above all, celebrate your AS child; they are the most creative, interesting, entertaining children I've ever had the pleasure to meet. And if you decide to try magnesium/B6 supplements, I'd love to hear how it worked out for you. *mama hugs* P.S. the mag/B6 link has also been found with other PDD's like autism, sensory integration and ADHD

 

how is it going for you all?