Welcome!
Welcome to the blogspot for ASP's Biomedical Group! This spot is dedicated to open discussion and exploration of Biomedical interventions for ASD. We are in the Greater Pensacola, FL area and seek to promote understanding and knowledge of Biomedical interventions such as GFCF diet and other DAN protocals.
ASP is a chapter of the Autism Society of America and we serve Escambia and Santa Rosa counties of NW FL. Our mission is to improve the lives of all individuals with autism in our area.
Please share your ideas and suggestions!
Together we are stronger and we ARE making a difference!
Susan Byram
Director, ASP
posted by Director @ 8:28 PM
20 comments
20 Comments:
Comments written here are from personal experience and opinion only. It is up to each family to make choices they feel are appropriate for their loved one with autism.
I need information on any doctors in our area who are willing to administer vaccines in separate doses. Anyone know any doc that will do that? Please share what you know!
If you are having trouble logging on, be sure you have created a username you can remember and the same with your password! I had to get reminders on mine, which took a bit of doing. Let's get some discussion going here! Anyone tried the enzymes we discussed at our Oct meeting?
Very exciting things are coming! January 27th and 28th is a MiniDAN! conference in Jacksonville featuring 4 DAN physicians: Julie Buckley, Jerry Kartzinel, Elizabeth Mumper, and Nancy O'Hara. Go to WWW.DANconference.com for information and registration.
ALSO, hot off the press, Dr. Julie Buckley is coming to Pensacola Wednesday, May 2nd! Location and time TBA so keep posted! This is very exciting as Dr. Buckley is fast becoming one of the top DAN doctors. She has just partnered with Dr. Jerry Kartzinel who was one of the founding doctors at the Thoughtful House in Austin, TX.
We need someone to help get comments going. Maybe I can send out a topic of the week and we'll see if we can get some conversation going. I have an article about this site in our newsletter that comes out early March.
Susan:)
We are looking for tasty bread too. It seems that the GF bread at the stores are without flavor and soft texture. Bread machine is probably the tastiest.
If you anyone is wanting to start on a GFCF diet, I have a "get started" diet that I would be glad to share. Contact me if you are interested. Tina Foley
CARD has a speaker coming to speak on "Combining Traditional Medicine with Integrative Medicine" on April 26th. Call 484-5040, ext. 1326 to register and for more details.
Just wanted to add. Card does have a speaker on April 26, but currently we do not have anyone signed up. If you are interested, please sign up. We would hate to cancel this important topice due to lack of interest. Also if the date and time are inconvenient, please let me know if there are days and times that are more convenient for those who may be interested. This information will be used for future speakers. Thank you.
We want you all to know about this upcoming event. Please call the CARD office soon (484-5040 ex. 1326) to sigh up. April 26th- "Combining Traditional Medicine with Integrative Medicine"
Dr. Kim Rushing will discuss how combining traditional medicine and integrative medicine (nutrition, homeopathy, herbs) is affecting the world of autism. Email your questions related to this topic (with CARD in the subject line) to Kim at 341LIVE@cox.net. Your questions will be answered following her presentation.
Just wanted to let those of you who are interested know that there is an anesthesiologist who has an office in Ft. Walton and Destin who is doing HBOT (hyperbaric oxygen treatment). He is a little more costly because he has the hard chambers but at least there is someone close by. We are planning a trip down there soon to check it out and will let you all know how it goes and if it is worth the cost and trip. We have already done 90 dives in Melbourne and Jacksonville in a soft tank with excellent results.
For all those who weren't able to attend Dr. Buckley's presentation on May 2, it was very exciting! Many of you asked about probiotics and enzymes so here are a few really good produts:
1) Klaire Laboratories -Probiotics: Ther-Biotic Complete is recommended by Buckley and Bradstreet. They also make a good digestive enzyme called SerenAid (has DPP-IV).
2) Kirkmans Laboratory - Probiotics: Pro-Bio Gold (also recommended by many DAN)
Digestive Enzyme: Enzyme Complete/DPP-IV
3) Custom Probiotics - makes a good D-Lactate free probiotic
4) Pharmax - probiotic: Mindlinx
There are others out there but these are the ones most of the docs are using and are reliable to be casein-free.
Also, I did try the guy in Ft. Walton beach and really liked him and his staff. My son did well in his chambers and if you are interested, it is worth a phone call at least. His name is Dr. Zant.
Just received a great news article on Dr. Buckley, the DAN! doctor who came here last week. Please log onto this site to see the article.
http://www.firstcoastnews.com/news/local/news-article.aspx?storyid=74021
The ASP website now has Dr. Buckley's May 2 power point presentation.
I just wanted to share this with anyone wanting to do the GFCF diet. My grandsons have been on it for 6 days. Everman's will be special ordering GF bread crumbs but there is a 6 order minimunm. Is anyone else interested?Suggested GFCF dietary calendar
Going GFCF in 10 weeks!
Because the GFCF diet can be overwhelming if tackled all at once the following is a suggestion of planning in the elimination of gluten and casein in stages. The idea is to create a feeling of success and less frustration. If you feel confident enough to move quicker than the proposed calendar then do so. . .after the second week. Very important to not eliminate gluten and casein at the same time so take the time to remove the casein first.
Week 1 -2: Remove all milk based products. This would include milk, butter, whey, cheese, yogurt, icecream, Pediasure, milk-based formulas, and all sub-ingredients. To replace milk, use Rice Milk or Almond Milk. Soy is so close in molecular structure to casein that it should be avoided in the replacement of milk and yogurt. It may have to be eliminated all together later but at least avoid it as a total replacement for milk. An overuse of soy is linked to the erosion of the esophagus, stomach and upper intestine. Also, be sure to add a calcium supplement to your child's diet during this time to prevent problems caused by calcium depletion (i.e. Eye stemming).
During the first two weeks, read the book "Special Diets for Special Kids" by Lisa Lewis to acclimate on the WHY to do the diet and what the diet includes. Also take this time to stock up on the gluten free foods. Buy the ready to eat and package mixes only. Hold off purchasing the various flours and baking ingredients for awhile.
Go to GFCFDiet.com and print off the various sections of GFCF food categories that can be purchased at your local grocery store. Familiarize yourself with the brands you may already have on hand (i.e. Heinz Ketchup, Lays Potato chips, etc.).
Week 3- Find five GFCF foods that your child will eat for breakfast and serve it. Here are a few suggestions:
Frozen GFCF Waffles and real maple syrup
Bacon and eggs (check for a GFCF brand of bacon)and GFCF HashBrowns like Cascadian Farms brand
Cream of Rice Cereal
Any of the Envirokids cereals with rice or almond milk (avoid Rice Dream because it has a gluten in it).
GFCF pancakes made from a mix. Serve with real maple syrup.
GFCF French Toast made from a GFCF bread.
Earth Balance margarine or Fleishmann unsalted are very good butter replacements. Earth Balance has a small amount of soy oil in it but if your child has not been diagnosed with a soy intolerance then small amounts are okay.
Week 4: Find five GFCF foods your child will eat for lunch and serve it, maintaining the choices for breakfast. Here are some lunch suggestions:
GFCF Hotdog (no bun)- we use Best Kosher, Hebrew National Reduced Fat, Sheltons Chicken or Turkey Hotdogs too.
Fritos (yes, they are GFCF)
Lays Potato Chips
Cascadian Farms French Fries with Heinz Ketchup (I use Westbrae fruit sweetened ketchup too)
Boar's Head Lunch Meats
Tostitos Tortilla Chips
Trader Joes Fruit Leathers
Fresh Fruit
Trader Joes White Organic Tortilla Chips
Whole Foods Market Chicken Taquitos (The 365 brand)
Ian’s GFCF Chicken nuggests (also at Whole Foods – make sure you get the RED LABELED)
Most Juice boxes are okay. Just verify with the manufacturer. We use the Hansens Juice Slams.
In a pinch for fast food then In-n-Out may be okay IF the restaurant processes the french fry grease properly at night. I always ask how the fries are cooked and then I ask how they filter the grease at night. So ASK. I order a hamburger, no bun, no condiments with french fries and soda (sprite only). If they have Heinz packages I will use ketchup. If not we pass.
I have found many restaurants who are willing to accommodate our requests. Even Rain Forest Cafe has a children's hamburger meal that can be served with tortilla chips and a soda.
Week 5: Find five foods your child will eat for dinner and serve it, maintaining your choices for breakfast and lunch. Here are some suggestions:
Any meat, starch like rice or potato and a vegetable. Just ensure they are cooked to GFCF standards. For instance, in place of milk in the mashed potatoes use a
organic chicken or vegetable broth.
Rice Spaghetti with Prego Spaghetti Sauce or your own as long as it is GFCF.
Homemade chicken nuggets with french fries (use Lisa's recipe or make up your own)
Any breakfast or lunch item your child will eat for dinner.
Week 6: Replace all snack items with GFCF.
GFCF Pretzels from Glutino
Lays Potato Chips
Fresh Fruit
Welchs Fruit Snacks
Trader Joes Fruit Leathers
Week 7: Replace all soaps, shampoos, lotions, sunscreens, toothpaste and laundry detergent and over the counter medication with GFCF.
There is a wide variety of items at the regular grocery store. It may be as simple as replacing brands or confirming that your current brand is okay.
Week 8: Replace all classroom contaminants. GFCFDiet.com has a whole section to give caretakers and teachers on what classroom items constitute non GFCF, like PlayDough and certain glues. Ask if you can donate the items to be replaced and work with the school to ensure your child is not contaminated by these items by coming in contact or ingesting anything. Educate the caretaker/teacher on your GFCF efforts. Be firm with your expectations because of the seriousness of these foods and contaminants in your child.
Week 9: Begin making GFCF goodies from mixes. There are quite a few websites that cater to GFCF cooking and quite a few to offer mixes. I usually make up cupcakes or cookies and freeze them to have on hand for special occasions like a birthday party at school or just as a special treat.
Here are some terrific websites:
www.causeyourespecial.com - All of their package mixes are GFCF and very easy. We especially like the pancake/waffle mix and all of the cake mixes. One suggestion is to try one of every item you believe your child will like. And reorder the successes. I usually put a powdered sugar frosting on cupcakes but Duncan Hines frosting is okay for some kids too.
www.creationsbykristin.com - terrific homemade goodies that are fresh and relatively inexpensive. My son loves the cinnamon rolls, breadsticks and cookies. I love the pancake mix from them too.
Www.glutenfreepantry.com - great mixes that can sometimes be found in the grocery stores. Just watch the ingredient list because they sometimes have casein in them.
Www.Missrobens.com - great for online general ordering. They have a large selection. It's worth looking at what they have to get an idea of what is available out there.
Www.glutensolutions.com - Another online ordering source for a variety of items. Just make sure their items do not have casein in them too.
Week 10: Now move to making a GFCF meal from scratch. Go ahead and start stocking up on the baking item replacements. Create a separate section for them that is out of the area that contains regular wheat flour in order to avoid contamination.
Here is a starting list:
GFCF Baking Soda
GFCF Baking Powder
Xanthum Gum
Sea Salt or Kosher Salt (Morton's is not GFCF)
Spices should be switched to GFCF brand like McCormicks or organic
Tapioca Flour / Tapioca Starch (same thing)
Potato Flour
Potato Starch
Bette Hagman's General All Purpose
Sorghum Flour - great for baking homemade breads
Brown Rice Flour
White Rice Flour
Arrowroot Starch
There are others so read the recipes from the various cookbooks and decide what to stock up on. Try one recipe a week at least to develop your favorites.
Other great sites to check out are:
http://www.danasview.net
http://www.tacanow.com
http://www.gfcfdiet.com
http://www.kirkmanlabs.com
http://www.enzymestuff.com
I am very new to all of this...GFCF diet etc. I went to a pediatric neuropsychiatrist in Nashville and he did a urine test which showed Mercury toxicity. He recommended Intravenous (blood) chelation, the GFCF diet and gave me loads of vitamin supplements for my daughter. He said Krkland brand supplements are very good. My daughter has been on super nuthera vitamins, zinc, omega 3 etc. My questions are: 1) does anyone know of a DAN doctor in the area who does chelation for heavy metals? 2) How to maintain a GFCG diet with a middle school aged child? 3) Is there a support group that meets in the Pensacola/Pace are?
Does anyone know about antifungal medication or supplements for my 4 year old son with autism?
Is this group still up and running?
I live in the area. I will be starting the diet for my son very soon. Thanks.
hkg:
I need to know that too!
I was wanting to find out if anyone knew a good DAN! doctor that they would recommend - hopefully someone relatively nearby. Also, does insurance cover a consulation for these biomedical interventions??
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