Special Diets?

[Guest]

How many of you are using a special diet with your child on the autistic spectrum? Has the diet been beneficial for you child?

 

We have tried the gluten free/casein free diet, the specific carbohydrate diet, and an an raw foods diet with our ds(10). His seizures did stop when eating all raw...but he still had many behavior issues; and we did not see any real improvements with the autism. I recently stopped all diets with him because I just wasn't sure if they were really helping or not. But now I am feeling guilty about taking him off the diet and I am worried his behaviors might get worse.

 

I would love to hear others experiences with special diets.

[hsmom27]

Lots of people feel very strongly about the diets. We didn't see an improvement in our DS for the over 2 years we were gluten/casein/sugar free. We did find out that DS was extremely lactose intolerant.

 

I actually regret having put him on the diet now. He has SID and oral aversion issues. Some very healthy foods he ate were eliminated by the diet. Now at an older age, he won't go back to eating the variety he ate before.

 

If you see worsening of his autistic behaviors, you can always start the diet again. Otherwise, I'd just enjoy the broader range of foods you can eat now.:)

[cillakat]

what little evidence there is on gf/cf indicates that it is not helpful.

 

It was helpful for us in terms of eliminating sinus infections and being healthier in general, but not helpful for behavioral issues.

 

K

[mom4him]

How many of you are using a special diet with your child on the autistic spectrum? Has the diet been beneficial for you child?

 

We have tried the gluten free/casein free diet, the specific carbohydrate diet, and an an raw foods diet with our ds(10). His seizures did stop when eating all raw...but he still had many behavior issues; and we did not see any real improvements with the autism. I recently stopped all diets with him because I just wasn't sure if they were really helping or not. But now I am feeling guilty about taking him off the diet and I am worried his behaviors might get worse.

 

I would love to hear others experiences with special diets.

Our ds isn't autistic but he has had major emotional/behavior issues. We have followed the SCD now for 3 1/2 yrs except for about 2 wks last May. We went off and I cooked more with grain using the NT books as in soaking and such. Within 2 wks we had our out of control child back. It was horrible! Went back on very quickly

One of the other things that has helped us a lot is removing chemicals from our lives as much as possible. If you want more info there send me a pm.

[Mom0012]

The gluten free diet changed my life and my child's life. My son was young when we began it -- 3 years old -- but I will never forget the time before we decided we needed to give the diet a try. Those were horrible, dark days. For him, the change was sudden and dramatic and unmistakeable. It was like night and day. I spent 6 weeks unable to sleep after we began the diet and for the first time it wasn't because I was worried out of my mind for my child. It was because I was so excited about the miracle that was occuring in our lives. I am still in awe of what happened.

 

So, yes, that diet can help if it is the right thing for your child. If you are not seeing changes, then maybe there is something else that will make a difference for your child. Diet is not always the answer. I know people who have had their kids gfcf for years but have never seen improvement. Honestly, I don't know how they do it. I would never have been able to continue with it if I wasn't sure it was making a difference. If you do not think you are seeing improvement, then I think you should go off the diet without an ounce of guilt. You gave it a good try and you won't always have to wonder if dietary changes would have made a difference. That's so much more than many people are willing to do. What a great mom you are!

 

Lisa

[hsmamainva]

My oldest son (who has high functioning autism) had great success with the Feingold diet. We went through the diet process when he was around 7 or 8 years old. Prior to trying the Feingold, and eliminating food coloring and preservatives, he was a very anxious kid! He cried at the drop of a hat. We then discovered that he was highly sensitive to red dyes in his food. He still avoids anything dyed red! (The gluten-free / casein-free diet didn't do anything for him, btw!)

 

My youngest daughter (who has autism) is on a gluten-free / casein-free / soy-free diet because she's actually allergic to all three things (with soy being her worst allergy).

 

I know it works for her because she breaks out in rashes if she eats anything with wheat or dairy in it. Soy just drives her into hysterics. If she has soy, she'll scream repeatedly and bite herself.

 

If you're still wondering if a certain food is causing problems, you could try eliminating one food you're suspicious of for a week or two and see if it helps. With my daughter and her soy allergy, we noticed the difference *immediately*. We eliminated soy and it was an instantaneous change for the better. It took a week or two to see the change when we removed dairy because it took time for the rashes to go away! Wheat took a little longer to notice an improvement...around a month.

[mom4him]

For the mom's who have had tried diet and seen no success I would like to gently remind that many of these diets need to be an all out faithful to the diet way of life. I grew up with when you go on a 'diet' you can cheat once in a while or just a little won't hurt. I know with the SCD just a little will 'hurt' if the diet is what you are needing.

Also is you do supplements, they need to meet the same as any food you would eat. I have tried this also with my ds. If he has a supp. that isn't scd safe he is over the hill in just a few days.

[hsmamainva]

For the mom's who have had tried diet and seen no success I would like to gently remind that many of these diets need to be an all out faithful to the diet way of life.

 

I agree completely with this!!

 

I read a book recently about children with autism and food allergies. The doctor who wrote the book commented that eating a single crouton can set a child back for two weeks.

 

You have to be 100% diligent to see results. If you're concerned about soy, for example, it means reading every label and even 'organic / gluten free' items can contain soy leicithin.

 

It means not eating out if there's even a chance that it contains something your child is allergic to. (We thought we were GF/CF, for example, but we took her to McDonald's for fries twice a week after her therapy sessions -- McDonald's french fries contain dairy and gluten!)

 

But, after clearing out our pantry diligently, and not allowing anything else, we saw results very, very quickly.

Edited May 3, 2009 by hsmamainva

[Jill]

After going GF, my ds quickly shows improvement in emotional/behavioral issues - within days. Over longer term, his sleep pattern improves, the cracks in the corners of his mouth go away, the big eczema patch on the backs of his hands dissappear and I'm not even sure what else. When he is gluten-challenged, the negatives comes back quickly - within hours or the next day for behavioral: tantrums, crying, oppositional. We got him to the pediatrician and she ok'd the celiac blood test panel and lo and behold he is high positive. He is on gluten for 9.5 more days until his biopsy is done. (we have various autoimmune disorders in our families so we really want to rule out the rare other cases that could give him a false positive.)

I found the info in the opening chapters of "The Kid Friendly ADHD & Autism Cookbook" very interesting. In the foreward, Dr. Jon Pangborn of autism now writes of the Autism Research Institute's compilation of parent-recorded responses of their autistic children to special diets. by these albeit anecdotal records, 50 percent of autistics improve on a casein free diet, 49 percent improve avoiding gluten and 65 percent improve on GFCF. So, no, that is not every child affected but seems significant. Of course, from my new perspective, I hope that they all have pediatricians open-minded enough to run the celiac panel just in case! My son did not exhibit classic celiac cymptoms: chronic diarrhea and failure to thrive. His were more subtle physically and obvious neurologically. Our elimination diet experiments convinced us to follow up on them.

[hsmom27]

Just for the original poster. When we did GF/CF no sugar for those 2 years we were obsessively diligent. I called the manufacturer every time we opened a new jar of anything (even products previously used) to make sure they were safe. It became a weird routine to make my cooking list and find the phone numbers for anything I might consider iffy. Then I called during the day, so I could cook at night.

 

We also checked on medications, toothpastes, and anything else that went into his mouth. We did find out he was lactose intolerant. Eliminating lactose did greatly reduce his outbursts and improve his sleep habits. The rest of the diet did nothing to alter his behavior. It's great when the diet truly helps the kids, because honestly it's easy to do. When it doesn't help though, it doesn't help. Do what's right for your family.:)

[chiguirre]

We gave GFCF a try for 6 months and saw no change starting or stopping. Of the 20 children in ds's school only 2 have improved with the diet. I actually had 2 DAN doctors tell me the majority of kids don't improve with the GFCF diet unless they have other physical indications of food sensitivities and my boys don't. It's well worth trying so that you can mentally check off that possibility, but if it's going to work, you'll know it. If it doesn't, you gave it a good try and you won't have to worry about what you didn't do.

[Mom22ns]

It's well worth trying so that you can mentally check off that possibility, but if it's going to work, you'll know it. If it doesn't, you gave it a good try and you won't have to worry about what you didn't do.

 

I think this is a fair statement. There are plenty of kids that don't respond. Our pediatric neurologist and pediatrician told us the diet wouldn't work. We decided to try gfcf anyway, just to see for ourselves. The results were dramatic and obvious. By our next appointment the pediatrician was asking me what we did so he could recommend it to other patients :lol:. He has seen very few kids respond to gfcf, one kids actually lost autistic characteristics by removing grape jelly. For those that diet works for, it is a Godsend and worth every bit of the effort and diligence. For those it doesn't, they have tried and can move on with confidence and never look back with what ifs.

 

We have always gone with a "first do no harm" philosophy. Gfcf fit that bill, so we tried it and we are so glad we did.

[Guest]

Thank you all for sharing what your are doing or have done with your child. After a lot of thought over the weekend I think we are going to try the Specific Carbohydrate Diet again. The last time we did it we were not 100% because I realized the chicken I was buying from the store had broth and natural flavors added (I am having a hard time finding any chicken that does not have things added). We also let him cheat sometimes when we went out to eat.

 

I am also planning to be more consistent with his supplements. I did good for a while but had slacked off a bit. We give him Super Nu Thera, Cod Liver Oil, DMG, Melatonin, and Valerian Root. I have heard that 5 HTP has been great for some autistic children...one mother specifically recommeneded Travacor. I am also thinking about getting an Omega 3 supplement like OmegaBrite that has higher EPA's.

 

He has been several medications in the past that did little or no good. That is why we are looking more to supplements. Has anyone found any supplements that made a difference for you child?

[mom4him]

Thank you all for sharing what your are doing or have done with your child. After a lot of thought over the weekend I think we are going to try the Specific Carbohydrate Diet again. The last time we did it we were not 100% because I realized the chicken I was buying from the store had broth and natural flavors added (I am having a hard time finding any chicken that does not have things added). We also let him cheat sometimes when we went out to eat.

 

I am also planning to be more consistent with his supplements. I did good for a while but had slacked off a bit. We give him Super Nu Thera, Cod Liver Oil, DMG, Melatonin, and Valerian Root. I have heard that 5 HTP has been great for some autistic children...one mother specifically recommeneded Travacor. I am also thinking about getting an Omega 3 supplement like OmegaBrite that has higher EPA's.

 

He has been several medications in the past that did little or no good. That is why we are looking more to supplements. Has anyone found any supplements that made a difference for you child?

 

Here are the sup. that I give our son: Kirkman Calcium, Kirkman EveryDay Multi-Vitamin,GI Pro Magnesium Glycinate, GIPro Scdophilus, Carlsons Super Omega-3 Fish Oil, Carlsons Super DHA, Carlsons Vit D, Doctor's Best Best L-Typtophan Enhanced with Vit. B6 and Niacinamide.

 

I try to watch his vit. very closely as I have had ones that have been Dr recommended that had illegals in and he reacts very quickly. I look at the bottle and low and behold an illegal is there. I have learned the hard way that the Drs around here do not know what SCD is nor do they understand that it needs to be strickly followed to really work.

I hope you can find the solutions you are needing for your dear son.

One other thing, I don't remember if I mentioned the difference that the chemicles have made in our son. I should say taking chemicals out of his life. Aside from SCD it is the next biggest improvement we have seen. If you want more info send me a pm.

[mom4him]

The last time we did it we were not 100% because I realized the chicken I was buying from the store had broth and natural flavors added (I am having a hard time finding any chicken that does not have things added). We also let him cheat sometimes when we went out to eat.

 

I don't know where you live but I get chickens from a Hutterite colony. It is near impossible to buy it in the stores. I also have gotten a couple of names of farmer ladies that do chickens and I am hoping they will raise some for me. Just some ideas.

 

As far as eating out, this can be a big one. Our ds has only eaten out once since we have started SCD and we had a reaction. He had a hamberger patty with cheese and some frozen veggies. Iwasn't sure if the meat had additives, the cheese was processed(they said it wasn't but.....) or if there was something in the veggies? Don't know, but I do know we haven't done a repeat.:001_smile:

[Wyndie]

Thank you all for sharing what your are doing or have done with your child. After a lot of thought over the weekend I think we are going to try the Specific Carbohydrate Diet again. The last time we did it we were not 100% because I realized the chicken I was buying from the store had broth and natural flavors added (I am having a hard time finding any chicken that does not have things added). We also let him cheat sometimes when we went out to eat.

 

I am also planning to be more consistent with his supplements. I did good for a while but had slacked off a bit. We give him Super Nu Thera, Cod Liver Oil, DMG, Melatonin, and Valerian Root. I have heard that 5 HTP has been great for some autistic children...one mother specifically recommeneded Travacor. I am also thinking about getting an Omega 3 supplement like OmegaBrite that has higher EPA's.

 

He has been several medications in the past that did little or no good. That is why we are looking more to supplements. Has anyone found any supplements that made a difference for you child?

 

Sorry I'm late to the party here but kids have been sick...

 

We do the Body Ecology Diet (www.bodyecology.com) with good success. It keeps the yeast down while we chelate. We do NOT practice 100% Body Ecology foods b/c we have way too many food allergies to do that; but practicing the principles and having kefir and cultured foods has been very good for the children.

 

We have a cabinet full of supplements but we have three children we're treating so keep that in mind. :D We use New Beginnings (www.nbnus.com) for alot of our supplements. I like the "one stop shopping" of this company. We use a multi mineral (chelate-mate from NB), iodine (iodoral), Vit D, multi-B vits, enzymes (www.houstonni.com), CLO, Methyl-mate (from NB), one child takes B12 shots, glutathione, melatonin, 5htp (as needed), nystatin, biotin. There are probably more but that's all that came to the top of my mind without looking.

 

I can't say any one supplement was a "wow" for any one child; but all supplements are necessary for them as we chelate and even just for mood stabilization when we're not chelating. They all have major digestive issues which is why we went to the Body Ecology diet and we were tired of paying for probiotics when we could just eat them with our food using cultured foods and kefir. We still do take probiotics when someone is sick - keeping yeast under wraps is absolutely essential for our sanity and general happiness.

 

Good luck as you get back into SCD. I commend anyone willing to try any dietary changes. It's not an easy road but I hope you see great gains with your son on the diet.

[Guest]

Sorry I'm late to the party here but kids have been sick...

 

We do the Body Ecology Diet (www.bodyecology.com) with good success. It keeps the yeast down while we chelate. We do NOT practice 100% Body Ecology foods b/c we have way too many food allergies to do that; but practicing the principles and having kefir and cultured foods has been very good for the children.

 

We have a cabinet full of supplements but we have three children we're treating so keep that in mind. :D We use New Beginnings (www.nbnus.com) for alot of our supplements. I like the "one stop shopping" of this company. We use a multi mineral (chelate-mate from NB), iodine (iodoral), Vit D, multi-B vits, enzymes (www.houstonni.com), CLO, Methyl-mate (from NB), one child takes B12 shots, glutathione, melatonin, 5htp (as needed), nystatin, biotin. There are probably more but that's all that came to the top of my mind without looking.

 

I can't say any one supplement was a "wow" for any one child; but all supplements are necessary for them as we chelate and even just for mood stabilization when we're not chelating. They all have major digestive issues which is why we went to the Body Ecology diet and we were tired of paying for probiotics when we could just eat them with our food using cultured foods and kefir. We still do take probiotics when someone is sick - keeping yeast under wraps is absolutely essential for our sanity and general happiness.

 

Good luck as you get back into SCD. I commend anyone willing to try any dietary changes. It's not an easy road but I hope you see great gains with your son on the diet.

 

Thank you Wyndie for sharing what you are doing. I had heard of the Body Ecology Diet a while back but never really looked into it because I had a hard time understanding it from their website. I went back there today after reading your post and it sounds really promising. Did you get started by just reading the book? I am having a hard time figuring out via their website how to implement the diet.

 

Thanks!

[Wyndie]

Ya know, the website really isn't clear at all. It's more to support the book really. So yes the book is the best place to start on that, however you could also join the support group of moms who do BED with their children with autism if you like. You don't have to post; just read and see what you think. It does take some doing to get going on this diet but one step at a time will get you there. I think even on SCD, you can do some of the fermented foods (check though, I can't remember for sure).

 

www.bedrokcommunity.org is the support group

[clemsongirl]

I recently started my hfa/ocd son (and our family) on a organic diet. I was going to start w/ GFCF but wanted to start w/ eliminating artificials, etc and go from there. I have also included more supplementation. He takes a multi-vitamin that has a little more than the RDA, Omega Bursts fruit chew, and 1 oz of Goji juice mixed w/ a dark fruit juice. I've also been reading about eliminating yeast, but I guess I have to wait awhile before adding another change. :001_smile:

[mom4him]

A biggy for us in eliminating yeast was getting peanut butter out. My dc used to put pb on their pancakes(cashew)in the mornings and I would make pb brownies once in a while. There was a white coating on my ds's tongue that looked like you could cut it off and never touch his tongue when we started scd. We made great headways but just implemanting the scd and being faithful with it but I could never completely get ride of it completely. His attitudes would directly corolate to the amount of white on his tongue also. I had someone suggest that possibly the pb could be a problem in that area, I got rid of it from our home and WALLA! the yeast cleared up!

We hadn't had a batch of pb brownies since Thanksgiving so I made a batch couple of weeks ago. All I can say is the end of that week and the beginning of this last week was not a fun time.

I am convince that there is a direct link for him.

[Iris]

I put my son on the cf/gf diet two different times under the direction of two different DAN doctors, and did not see an improvement either time. I was so diligent and did almost all of our food preparation from scratch. It was tough to stop the diet because I wanted so much for it to work for my son, but it wasn't worth the effort if he wasn't benefitting from it.

 

What we did see some benefit from is valtrex (an antiviral)...there's a Yahoo group called 'MB12/Valtrex' if you want to learn more. We are now working on his nutrition through supplements before beginning gentle chelation (just found out last Friday that my ds has significant mercury and lead levels).

 

Two of my friends have had great success with the Feingold diet and one friend's son is a different child when on probiotics.

 

Take care and good luck...