Seeking Help W/beginning Nutritionally Addressing Asperger's

Updated on June 23, 2009
M.H. asks from Dallas, TX
18 answers

we're in the midst of getting our asperger's dx for our 5-y-o son. i've of course been doing a lot of reading/research and am feeling quite overwhelmed. i know i need to do my own research, and i am, but i'm getting a bit confused as to where to start. my son barely eats, so i know i need to work on boosting his calories first. next is balancing his gut flora and i strongly suspect yeast. has someone gone down this road and help me figure out where to start? probiotics and natural/herbal anti-fungal remedies to start? digestive enzymes. i also know gfcf is most likely called for, but i need some time to prepare (mentally and other ways) for that and also feel it's best to wait until after our family vacation in july ...

sorry to ramble...thanks for the help/consideration.

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A.M.

answers from Dallas on

My good friend is a RD (Registered Dietician) who specializes in children-- you can contact her at: ____@____.com

Good Luck!

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P.S.

answers from Dallas on

LISD has an AWESOME SEPTSA (Special Ed PTA) with a TON of great members and information. They open their doors to everyone (not just families who fall in the Lewisville School zone) and have parents who have been there and done that for almost any diagnosis. You can find a link to their website at LISD.net or LISDPTA.org

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J.S.

answers from Dallas on

M.,

I've done quite a bit of research. Here's what I can tell you:

- Best yeast candida remedy ever is grapefruit seed extract. Tastes awful, but knocks it out. I recommend Agrisept, a product which you can buy online. I have another from Whole Foods, but not as powerful as Agrisept. Best to dilute in water, but if he's 5, you'll be lucky to get it to him on an EMPTY stomach in a little apple juice.

- For probiotics, I've used Da Vinci brand and Xymogen. Like them both. I like ones that don't need refrigeration. This is an EXCELLENT addition to his health regimen.

- If you want to confirm a gluten/casein/soy problem, I recommend www.enterolab.com for testing. Stool is BY FAR the best form of testing. Blood tests and skin scratch are poor performers. That's why conventional docs hardly ever properly diagnose this stuff.

- Ezekial bread CONTAINS GLUTEN. The grains are soaked and sprouted, which aids digestibility, but it is NOT gluten free. Eliminate this to start.

- Raw goats milk still contains casein and may not be tolerated well by your son. We get raw goats milk products from a state certified dairy in Collinsville www.randcairy.com. Highly recommend them, but again, raw milk may not be for him. Some believe the pasteurization both kills enzymes and probiotics in the natural milk that aid digestion, as well as transforms the casein protein into something undigestible by the body. Others think even raw dairy should be eliminated. The answer is probably somewhere in between, being different for different people. See www.realmilk.com; www.mercola.com for raw milk research.

-diet- cooking dinner is not much problem for us. It is snacks and school and friends and restaurants and birthday parties, etc. For healthy snacks options, we like coca cassava bars from www.mercola.com. Pricey though. There are other brands as well. Watch sugar content. Fruit, nuts, avocado, hummus, etc are good options. If he can tolerate eggs, that's another good standby. There are lots of books out there. Whole Foods has a wide selection of items. We are overjoyed at their recent introduction of dairy free ice creams: hemp milk and coconut milk options. Yum yum. But watch the sugar. Bad stuff for the gut. Does he like smoothies? Metagenics offers some Rice protein powders you might look into. Royal Abrams Pharmacy carries a big line of them.

Good luck.

2 moms found this helpful
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M.D.

answers from Dallas on

Hi, have you found any yahoo groups on this topic? There is one called ApraxiaBioMed yahoo group but it's not just specific to apraxia. You could start there. They always talk about gfcf, gut issues, poop, supplements, etc. There are several women in this group that have a ton of information to share, women who have a special needs kid and is a lot farther down the road than you and me. Also, several families have kids on the spectrum so it really does cover way more than just apraxia.

Also, we just started a program for my 5 yr old son in December through the National Academy for Child Development. We are seeing more progress through this program than from many months of traditional therapy. I am very hopeful that this program will be road to my son's recovery!

Anyways, I can relate to the overwhelming feeling you are experiencing and I couldn't help but tell you about NACD. I wish we had found them a lot sooner than we did but thankful for the timing of none the less.

The website is www.nacd.org. I know this isn't diet related so I hope I'm not frustrating you! Feel free to message me if you have any questions about NACD. They help children of all backgrounds and their goal is to bring each child to his/her fullest potential. My son is developmentally behind by a couple years. No one knows why. He also has been diagnosed with Dyspraxia, which in a nutshell afects his gross and fine motor planning movements (basically everything) as well as his speech. He has some behaviors on the spectrum but not really enough to put him on there.

Take care,
M.

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J.H.

answers from Dallas on

I'm not sure how much help this will be, but my son had gut issues when he was first dx'ed with Autism the only thing I did right off was eliminate all dairy. Switching to soy milk was the best thing I ever did for him. He would only eat a few things so GF/CF was just not an option for us. I know when you first start this journey all of the info can be so overwhelming so I just picked one small thing to do and went from there. After 3 years he has almost recovered so I did something right. :-)

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S.K.

answers from Dallas on

Hi, M.! I'm sorry to learn about the challenges you're facing. I know there are many health care practitioners who specialize in autism, of which, I'm sure you're aware, Asperger's is a "subcategory" because it, along with ADD and ADHD, falls along the autism spectrum. For this reason, a DAN (Defeat Autism Now) health care practitioner would likely be very helpful. Dr. Constantine Kotsanis in Grapevine works with numerous children and helps with many different issues. Also, Dr. Mary Ann Block in Hurst would likely be a good place to start, though I'm not as familiar with her as I am with Dr. Kotsanis. You may also want to look into a noninvasive urine test that will assess 12 of your son's neurotransmitters. It could help you figure out the best approach to take. The website of the company that offers the test is www.neuroscienceinc.com. You can even ask for doctors in your area who do this kind of testing. Please let me know if you'd like additional information on anything I've shared. I wish you and your family the very best!

S. King

1 mom found this helpful
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D.B.

answers from Dallas on

Dear M.,

By reading everything you are considering it is obvious you are making yourself well-informed and you are not taking this laying down. My congratulations to you. Yes, there is a LOT of information out there and it would make anyone's head spin.

I have a son on gfsf (sugar free, but not casein free) and have a ton of resources I can share with you. I also have some fantastic information on probiotics, digestive enzymes and other nutritional supports such as cultured foods, food combining etc.

I specialize in brain development and would be glad to share further information about how to stimulate brain development---thus solving problems from the root cause instead of chasing symptoms.

Please message me if I can help.

www.parentswithpurpose.com
Blog-- www.parentswithpurpose.blog.com
D.

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J.H.

answers from Dallas on

We are currently doing a GF diet with our son. There are a lot of great resources on the web. You can attend meetings for the gluten intolerance group of North TX. See http://www.northtexasgig.com/

You may want to get advice from a dietitian who specializes in special needs kids. You can take a gluten/casein sensitivity test yourself - www.enterolab.com. Faye Elahi is the dietitian we saw for our family. Her office is in Plano but once a month she is in Dallas on Mockingbird Lane. See her website at http://glutenfreedallas.com/

Fortunately it's easier now to do GF/CF than it was a few years ago. There are a lot more products on the market. My sister just told me the Southlake Walmart has a whole GF section. We do most of our shopping at Central Market in
Fort Worth and the Sunflower Shop. Whole Foods is a little far for us but sometimes we go there, too.

I read a lot of things about nutrition on the web and some of my favorite sites are www.bodyecology.com. I think Donna Gates has a video now addressing the autism spectrum. Also see www.mercola.com. Dr Mercola is an Doctor of Osteopathy who has been studying nutrition for 25+ years. He has a huge search engine on his web with a lot of sound advice.

You can end of spending a lot money on supplements and food so do your research first. It's always better to prepare your meals from scratch at home if you have the time and energy. You can cook a bunch of soups/stews and casseroles all at once and freeze them. My husband just found a service for GF meal delivery and I believe they will also do CF, too. http://glutenfreemeals.com/. I haven't used them yet.

About the milk issue - I would be careful with soy milk. It can interfere with your sons hormones and has toxins from processing. Most soy does unless it is a fermented soy product such as miso, tempeh, or natto. Also, most soy is genetically modified. Products with the USDA organic symbol are the safest. Eden organics makes great products, too. They don't use the symbol b/c they say their products are above the standard. Almond milk is a good alternate. Rice milk is too, but contains a lot of sugar. We drive to a dairy farm and acutally buy raw milk. It tastes great and doesn't cause problems for my husband like pasteurized milk does. See www.realmilk.com/

I hope this helps. Good luck to you and your family.

J.

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S.A.

answers from Dallas on

My daughter was on a GFCF diet for 2 years. We live in the Fort Worth area and have found that the Sunflower Shop and Central Market are good places to shop. Whole Foods is another good place. There are also several good online sources of products. However, I eventually figured out where to buy most of those things locally. Once I figured out which foods were good and where to find them, it wasn't that hard. But, the food is expensive!

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A.F.

answers from Dallas on

M., I work with Nutritional Supplement Company that researches and manufactures products that are very safe and effective for all ages. Your son can greatly benefit from the Children supplement. I can connect you with other moms whos kids had great result with ADD?ADHD, Autism, Asperger and many others.

The supplements are only available through an Independent Distributor and comes with 30 day money back guarantee. There is information presentation in Addison tomorrow evening from 7:30P to 8:30P, let me know if you would like to attend and I will send you the details.

Wishing you the very best.

A.

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K.E.

answers from Dallas on

Yes there is a marvelous nutritionist who deals with this in North Dallas. Her name is Faye Elahi
She is amazing and will change your lives!
Here is the website and her email.www.specialneedsnutrition.com/29232.html

____@____.com

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N.W.

answers from Dallas on

M.,

I recently heard second/third hand that the Scottish Rite Hospital is Dallas provides excellent services in the Asperger/Autistic area. And these services, I understand, are free.

Maybe they can guide you througb this.

Please let me know what you find out.

With prayers for you and your family,

N. Welborne
###-###-####

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M.B.

answers from Dallas on

Hi, M.! I don't know too much about all the diet issues, but my nephew has autism and he had lived with us for about five months and I could see some of the things he had eaten, he needed to stay away from. Anything with wheat and red dye. I also heard from a dr. to stay away from any foods that have yellow dye. It is just too bad that all the foods he can have are so expensive!

One of the responses you recieved had Scottish Rite. You will be seen a lot faster if you know anyone that is in the Kiawans clubs. In fact, that is a preresquite. Also, when calling them please be sure to specify what you are in need of. My sister in law called and said they could not help her, and I know they can but you need to be very specific. I think it falls under mental health. HOpe this helps a little.

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B.D.

answers from Dallas on

We're at the beginning of our journey with autism for my son, and have often shared your feelings of being lost about what to do next and grieving the diagnosis.

One of the best appointments we've had has been with a nutritionist who specializes in autism diets. Another response mentioned her also. She is Faye Elahi and her new website is www.glutenfreedallas.com. She can recommend nutritional testing/assessments, help you build a plan, then follow up with you. I had started a regimen with our pediatrician and was at a loss with what was left to feed my son as well as having a million questions about how this worked for his body. My appointment with her was amazing and the adjustments she made to the timing of our supplements and additions of a few made an immediate impact. I am really looking forward to our next appointment with her.

I would also recommend Jenny McCarthy's book, "Healing and Preventing Autism." Excellent explanation of how this all works. You can also check your library for autism and ADHD diet and cookbooks. I have preferred checking those out as opposed to buying them because some are better than others and you can save a ton of money.

We recently completed our first road trip on this special diet. If you want tips on travelling with a special diet, let me know and I'll share more.

Hang in there! It makes a huge difference and as you see improvements in your son, it will all be worth it!

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S.O.

answers from Dallas on

There is a ton of information out there so you are right to gather info first. I recommend looking into the GAPS diet which is similar to gfcf, but better nutritionally. Google gaps diet for the wedsite. The dr who created it is an md, neurologist and nutitionist. Her book does a great job of giving detailed explainations and diagrams of what is happening in the gut of our kids. She also talks about starting off with picky eaters. As you change your sons diet his tastes will change as well. My daugter was all about bread, sugar &milk products. Now she eats almost anything. A couple things that we found that helped us transition -- Ezekiel bread is okay (try the raisin bread 4 toast) and goats milk products are okay. Also raw keifer is okay. We get raw milk (also ok on gfcf) which I use to make keifer and and raw yogurt.

It is overwhelming at first, but we've seen some big improvements in my daughter. Also, the gaps diet book has helped us all become better eaters.

Good luck.

P.S. Dr Campbell-McBride has some utube videos that might be helpful

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R.J.

answers from Dallas on

Hi M.,
I have very similar situation to yours. GFCF diet is addressing only gluten and casein but there are more foods, basically complex carbohydrates that are problem to digest for these kids. GAPS diet is based on Specific Carbohydrates Diet invented in the first half of XX century and it helped many, many people with all kinds of digestion problems to recover and achieve healthy digestion system. Please look into following and it will give you more details.

http://www.youtube.com/watch?v=nLP0Ijo2CK4 
http://www.youtube.com/watch?v=2OHJt0_wrFs 
http://www.youtube.com/watch?v=SpmYMo98lYo 
http://www.youtube.com/watch?v=L10veYssJvA 
http://www.youtube.com/watch?v=naFmpsSXbnE 
http://www.youtube.com/watch?v=ylju4YQcDi8

www.gaps.me

We are on it right now and my almost 5 year old son is doing so much better after only 2.5 months. I am SO HAPPY I have found this diet and strongly believe it is the best approach to help kids that have both digestion and neurological problems. Please look into this!

R.

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L.W.

answers from Dallas on

read jenny mccarthy's book about her battle with her son's autism. do an author search at the public library for mccarthy... great book!

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L.G.

answers from Dallas on

Hi M.,

I saw some really responses posted, its wonderful that you are looking to really take care of your son! The road to changing dietary habits is difficult at first because it will seem like you can't eat anything but you find better things that really are optimum and make you feel better. I also recommend that the whole family on board with making changes for the better. The top things that cause distress in the body is wheat, dairy, corn, soy and nut products. When you shop stay away from the center aisles and just shop on the outside where the produce and meats are mostly. I noticed that you said you were thinking yeast and that is a common one but to get rid of that you have to avoid all kinds of sugar (meaning sweets, sweetners, and all things that convert to sugar ie pasta, rice, potatoes..)

There are alot of things that can be recommended, I have worked with aspergers in teens and have had tremendous results but it does take some time to rebuild from the inside out. Do your research by all means, and also look into vaccine research. If you have any questions feel free to contact me. Good luck with everything!

L.

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