Regression and Recovery

A lot of people get really upset if you use the word "cure" with Autism, because we know Autism isn't something that can be cured and isn't something that just goes away or a child outgrows, if anything we see the symptoms associated with Autism get worse over time. With that said, there are those who claim they were able to help their child "recover" from Autism or claim that certain therapies can help "heal" a child suffering from Autism. Naturally, I've read many books on the subject because I want to know what's out there, if it's logical and makes sense, and most importantly, if it's safe.

I'd like to point out that I think the reason we haven't found the "one" cure / healing therapy for Autism is because every child who is diagnosed with Autism isn't the same. They won't have the same food allergies, they won't all be the same age, gender, and every child falls into a different area on the spectrum. What is the spectrum and where does my son fall on it? That's a great question. At times, if I were to answer that question honestly, I'd say he's on the mild / lightly affected side. For the most part, I wanted to believe my son was a "typical" kid with just a speech and language delay. Then there were days when my son was so far from "typical" I wanted to die from embarrassment or frustration or exhaustion. If I compared Ben to the typically developing two year olds I worked with as a preschool teacher, or to my friends / relatives toddlers, I'd have to admit he was very delayed, behind and immature. But when I compared Ben to child who displayed the stereotypical Autistic behaviors (toe walking, flapping, or more extreme symptoms like head bashing, etc) my child seemed "normal" and "healthy." When the time came for me to get a professional diagnosis (because you can only ask your friends and family for so long, "is this normal?") I received a few mixed thoughts:

• The professionals at Early Steps said he wasn't Autistic but showed a couple red flags.
• Our DAN! doctor, Dr. Udell said he was "on the fence" and Ben could turn out typical or could continue to regress, so we left with a "pre-Autistic" diagnosis.
• The neurologist at the Autism clinic gave a 100% confident diagnosis of Autism (without any test, communication or contact with our son)

Personally, I think Dr. Udell hit the diagnosis right on the money. Ben was regressing and without a doubt, my husband and I believe that had we not intervened, Ben would have continued to regress down the path of Autism and who knows how severely he may have been affected. So what do I mean by "we intervened"? Autism is something that occurs inside a child's body - both mentally and physically. I say this because from everything I've read and learned, children on the ASD are not only mentally locked away in their own world, unable to make the neurological connections they need to develop and function "typically" in our society, but they also struggle physically with many health issues. Many times these kids on the ASD have digestive, gastrointestinal problems, struggle with diarrhea or constipation regularly, have reflux, vomiting or other dietary issues, allergies, low immune systems which lead to constant ear infections and colds, and many of these children are malnourished, underweight, have dark circles under their eyes and protruding bellies. These health issues can be painful for a child to live with and you know how difficult it would be to concentrate and learn when your tummy hurts or you feel sleepy (many of these kids also have sleeping issues - perhaps because they don't create enough melatonin) or the child can't focus because he/she feels drugged or drunk.

Ben struggled with all of the issues I listed above (no constipation, just loads of runny stools) and so we changed the foods we put in his body that were most likely the source of his body's health issues. By removing dairy and wheat, and eventually soy, potato, certain carbs and other foods he tested positive against as a food intolerance, Ben began to feel better, look better, and thrive both physically and mentally. The probiotics and vitamin supplements we added to his diet were a big bonus on top of the elimination of the foods we removed from his diet and together the impact was great. It did not happen overnight, and it continues to be a slow, but steady progress.

An overview of Ben's speech development to date:

• At 15 months Ben had two words: "Duh" for duck and "Dah" for everything else.
• At 18 months he had about 10 words, "tat" for cat, "doh" for dog, "ight" for light, "cookie," "juice," "appoh" for apple, etc but still no momma or dadda. He could point to all his major body parts and could point to every single animal we asked him to find in our Noah's ark book or for every item in Goodnight Moon.
• At 24 months or 2 years old, Ben had only put together 2 words a few times. He said, "frey-fry" for french fry, "appoh juice" for apple juice, and once said, "offle hot" for "waffle hot." He knew a handful of animal sounds but said, "nya" for "lion" "gark" for shark, and for whatever reason said, "up" for "cow" ex: "Up. Moooo" etc.
• At 26 months all the animal noises stopped.
• By 28 months almost all language was gone. He said, "icesee" for "lizard" or "gucko" for "bathtub." Total gibberish. He no longer could point to his body parts when asked and had no patience to look through books or point to the items we'd ask him to find.

We started Ben's diet at 29 months. The first few days of Ben's new diet we saw major withdrawal symptoms and he had horrible meltdowns. At this point he had zero language. His only word was "mow" for "no" and it wasn't used consistently. Ben had last called me "dadda" two months prior when I had picked him up from school. He couldn't tell me when he wanted to eat, drink, was stinky, tired, or was in pain. He couldn't tell me if he wanted to watch a movie, go outside, color, play, etc. Every cry was a guessing game and I had to go through a checklist to determine what he wanted. He had poor eye contact and his eyes would glaze over and he would "zone out" often.

At 2.5 years old, he had never once called for me or yelled "momma" when he wanted / needed me.

A week into the diet Ben went through the "awakening" period where he seemed very aware, alert and the mental fog he often slipped under had lifted. During that second week on his new diet, he said, "up" for the first time shortly followed by "eat" which was another first. He continued to slowly but surely use new words and around the 25th day into the diet he regained all the animal noises and most of their names that he had lost over the previous 5 months. Right away he picked up his lost ability to point to all his body parts when asked and started getting back into looking at and pointing to his picture books.

At 30 months old, or a month into the diet he tried putting two words together: "Out. Side." Then followed "Papa House" "Light House" as well as learning to say new words all the time. He went from 1 word ("mow" for no) at 29 months to 25-35 words by 31 months. He also began drawing circles for the first time, whereas before it was only scribbling. My aunt, who spends the most time coloring with him, noticed how deliberately he was attempting to color inside the lines now.

At 31 months old, Ben gave his first kiss after being asked for one (before it had been more random) after that he continued to give hugs and kisses all the time. He reached 50 words after 2 months on the diet. Ben could now follow a simple task, like "go put that in the trash" or "pick up Momma's keys." Instead of grabbing his wrist and making him hold my hand, I could now ask for him to hold my hand and he'd willingly take my hand (even if he only held it for a minute or two, it was a start). Ben could finally say "watch" for wanting to watch a cartoon, "eat" and "drink" and well as say which food / drink he wanted when given a choice, or say "mow" for no. He would sign and say "nore" for wanting "more." Ben started saying "stinky" now and occasionally peed in a toilet.

At 32 months old, just before Mother's Day, Ben learned to say "momma" and for the first time began calling me all the time. He also started learning a few colors at this point and my husband took advantage of this new teachable moment and worked with him until he learned not only how to point to the color we asked him to find but to start speaking the names of the colors. The day the Neurologist gave us the 100% certain Autism diagnosis Ben put his first 3 word phrase together. While playing at the park he told me, "Rock. Yuck. Trash." then he threw the rock in the garbage can. Later that night while Nick was throwing Ben in the air and lifting him high to touch the roof, Ben said, "Dadda. Up. Touch." and "Up. Touch. Roof." We had seen so much progress in such a short time we wondered how in the world this neurologist knew Ben was autistic without performing any kind of test or even talking to him? We constantly wondered if we were in denial or if maybe speech delay all by itself can be defined as Autism.

At 33 months old, Ben began adding lots of two word combinations to his vocabulary. There was a short time between Ben just calling "momma" to him saying, "momma LOOK" and "momma sit" or "momma help" or when Dad tickled him too much or told him not to touch baby brother, Ben would come running to me crying "Dadda bop" meaning "tell dadda to STOP." My 11 month old Jonathan at this time said his first word "ight" for light. We began praising Jonathan everytime we'd ask him "where's the light" and he'd point to one and say, "ight." One day after I buckled Ben in the car to take him to school he pointed to the light on the side of the car door and said with excitement: "Momma! Look! LIGHT! See?" which was his first 4 word phrase ever. I nearly fell over and had tears in my eyes while driving him to school because for a second it felt as though we were just having a conversation! Before Ben was born I couldn't wait to hear his cry, because I just wanted to hear his voice. For over 2 years I literally had dreams of Ben talking to me, and now I'm finally able to hear this little voice communicating with me, not just screaming!

At 34 months old, Ben has used the toilet twice to go stinky. Ben finally learned how to answer the question, "How old are you?" and he proudly opens up two fingers and says, "Twooo" and even holds up one finger when I asked how old his baby brother is, who just turned one. Ben started saying, "Tank you Dadda" or "Tank you Momma" for "Thank you" and just this past week after we say "Love you Ben" he starting replying with a "fu fu momma" or "fu fu dada." It's the cutest damn thing in the world and if those sweet little words aren't healing our broken hearts then I don't know how else to define a recovery.

Just had to add this video in: The only time Ben ever "flapped" his arms is when mocking how baby brother flaps his arms while babbling "ma ma ma ma":

Ben had a tiny bit of language and comprehension, lost it, and is slowly but surely recovering it. His stools are ever so slowly becomming normal. His language continues to grow and his comprehension continues to amaze us. We believe changing his diet made this healing process possible. What is working for us may not work for everyone, but changing Ben's diet helped us to take better care of him. I encourage everyone to explore the safe and natural methods for healing and recovering our speech delayed / pre-Autistic / Autistic kids.

*I will continue to update this post with time as Ben continues to grow!

Going Gluten Free / Dairy Free

So this post probably belonged somewhere a few posts back, but it didn't exactly go with the medical updates. I want to get this out there because it's important and our first trip to Whole Foods with the intention on going gluten free was a bit of a disaster because we didn't have a clue what to look for or what was available.

If you are just starting a gluten free diet I hope to save you a lot of headache / money (hopefully) by sharing the products I think are edible and how to save money on them. Because we are also dairy free, unfortunately I won't be able to recommend too many gluten free items that have dairy in it because I haven't been buying those.

Butter! How could I have forgotten to add BUTTER!?!

I started out using Earth Balance Soy Free / Dairy free butter (it's the red label one):

 Then learned about Ghee also known as clarified butter which is made from organic cow milk based butter, only the protein casein and whey has been removed. I first purchased ghee, but at $10 for a small jar I eventually learned how to make it myself!

Now I very very rarely use any vegetable oils, and only use Ghee or Coconut Oil / Butter:

We'll start with breakfast:

Toast - I have tried several Udi's gluten free breads (in the frozen section) some without yeast, some without potato flour, and definitely only those without dairy. I tried a few other brands (bread/food of life brand is my second favorite) but the white bread is my favorite:



I use this bread for making sandwiches and french toast too!

Waffles: The van's brand is pretty terrible but I LOVE the organic Homestyle gluten free waffles by Nature's Path. You can find these in the frozen aisle as well. They are sweetened with pear juice instead of cane sugar which is awesome and smell like real buttery Belgian waffles when toasting in the toaster oven:

Eggs and Bacon:  I now buy cage free, antibiotic free, free range chicken eggs and the Pederson's Natural Farms bacon is the very best bacon I've ever had! It's the only brand that states right on the package: Uncured Cherry Smoked Bacon, Pork raised without the use of antibiotics, or growth stimulants. Ever! No artificial ingredients, No preservatives, No gluten, No lactose, No MSG. Sorry but couldn't find a good picture of either egg brand or bacon brands online.

Cereal: Gorilla munch is awesome and comes in bulk sizes (at my store) and sometimes has a coupon. It tastes very similar to Captain Crunch only it doesn't tear the roof of your mouth off!

These kind of remind me of frosted flakes:



They sell adult brand cereals too that are gluten free, I just haven't found any I really liked yet. I do buy the puffed brown rice and use it in cooking things like apple crisp or peach cobbler so you might want to check it out - it's just bland as a cereal so I add a little brown sugar and Cinnamon when I eat it.

As for milk substitutes I LOVE Almond milk, specifically the 365 brand Organic Unsweetened Almond Milk from Whole foods, and Ben likes the Silk Pure Almond Vanilla flavor. Coconut milks are also yummy and I use those for baking.

Yogurt: There's only one kind we buy and it's SO Delicious. That's literally the brand name because it's that good. I like the plain and vanilla flavors and for the past month (through August 31st) Whole Foods has a $1 off coupon and I buy between 4-6 a week so that's around $20 a month in savings right there). I also use a store coupon for the So Delicious Coconut Kefir drink (vanilla flavor) and mix a couple spoonfuls of the kefir (natural probiotic) into the yogurt and this is a wonderful breakfast (or dessert). I like to add organic frozen blueberries and Enjoy Life chocolate chips to it or a 1/4 cup Gluten Free Cranberry Granola by Udi's. YUM!!!

I have a few recipes for making gluten free pancakes, homemade blueberry or chocolate cranberry muffins, pancakes and banana bread / muffins, but won't go through posting all that here. If you want to make breakfast foods from scratch I recommend ordering any / all of these cookbooks because they not only offer the recipes but go into great detail over WHY it's healthy to incorporate more coconut into your diet and the benefits of removing gluten, etc:

http://www.amazon.com/Internal-Bliss-Cookbook-following-Psychology/dp/0615409318/ref=sr_1_5?ie=UTF8&qid=1310862967&sr=8-5

http://www.amazon.com/Recipes-Specific-Carbohydrate-Diet-Lactose-Free/dp/159233282X/ref=sr_1_1?ie=UTF8&qid=1310862923&sr=8-1

http://www.amazon.com/Cooking-Coconut-Flour-Gluten-Free-Alternative/dp/0941599884/ref=sr_1_1?s=books&ie=UTF8&qid=1310863050&sr=1-1

Lunch and dinner:
I make our lunch and dinners from scratch (for the large part) and use a mixture of Hol Grain Brown rice bread crumbs and Better batter seasoned flour mix for making chicken nuggets / fish sticks. I also use coconut flakes and crushed pecans for breading too.

seasoned chicken fingers

coconut fish sticks

pecan crusted salmon

Once you learn to make your own breaded chicken you can add a marinara sauce to make a chicken parmesean or a orange preserves (with a touch of white pepper, sweet red chili sauce or whatever spices you like) and can make a chinese style orange chicken:

orange style chicken

We just LOVE the seasoned flour at Better Batter and have used it on chicken and mahi mahi or halibut and it's better (not to mention healthier) than any dinner at a restaurant!

seasoned flour mahi mahi

seasoned flour fried chicken

If you are just starting out and aren't ready to take on cooking just yet, Amy's gluten free / dairy free mac n cheese is the ONLY mac n cheese that I've found to be edible and it's found in the frozen food section:

and Ian's chicken nuggest and fish sticks are also in the frozen food section:

It's very expensive to buy these foods premade though so if you aren't good at cooking, I'd suggest you learn to cook unless you have unlimited funds to spend on these preprepared foods.

Planning a gluten free / dairy free lunch and dinner is in a way easier for me than breakfast, since raw meats, fruits and vegetables are naturally gluten free. More and more items that are naturally gluten free are now proud to display a gluten free logo on their product label. Be careful with any prepackages meats because gluten can be hidden inside the ingredients as a filler. Boar's Head deli meats are now displaying which ones are gluten free. We sometimes buy hot dogs (because they are easy) and Apple Gate makes uncured ones that are nitrate and nitrite free (as well as gluten free / casein free of course!)

Pasta: I really love the Tinkyada brand noodles, De Boles makes the best lasagna noodles, and Lundberg's Penne pasta is amazing! All of these brands make Brown Rice pasta which I think is so close to the real thing you can't even tell the difference. Pasta's that use Quinoa or Corn (to me) tend to be gritty, off tasting, and crumble / fall apart more easily.

Tinkyada tri-colored veggie pasta with ground beef marinara

Pizza: Udi's makes a gluten free pizza crust in the frozen food aisle but because we don't have a cheese substitute we like we just eat it with lots of vegetables on it. Am going to try out a new cauliflower pizza crust soon so will let you know if that's any good.

Dairy free vegetable pizza

We try to only eat grass fed, organic, antibiotic free, hormone free meats and organic fruits and vegetables as well. We only eat wild caught fish too.

Snacks: Glutino Crackers, Synder's Gluten free Pretzels, Corn chips and Plantain Chips are the staple snacks in our home.

Dessert: I make all of our muffins, cookies, brownies, cakes and treats by scratch using Rice flours, coconut flours, almond flour, tapioca flour, sorghum sweet flour, garbanzo bean flour and quinoa flour. I have had WONDERFUL experiences using BetterBatter's flour (and Seasoned Flour for fried foods is amazing) and am interested in trying out their cake mixes. I have not found ANY cookies or treats that are worth the cost for the taste. I use the Enjoy Life chocolate chips that I listed above in my cookies, brownies and cakes and have not had much success using the cake mixes (the vanilla ones taste too much like corn bread to me). If you know of a gluten free / dairy free / soy free cake mix / dessert mix / premade cookies, etc that is yummy feel free to pass it along and email me at TheVeryBreastThing.gmail.com

All of the desserts below use a combination of flours but I'll list the main flour used in each one:

Homemade chocolate chip, snickerdoodle and sugar cookies using mostly rice, tapioca and sorghum flours

Coconut flour and rice flour chocolate brownies using Nestle 100% cocoa powder and Enjoy Life chips

Almond flour and rice flour cinnamin walnut coffee cake

Rice and garbanzo bean flour chocolate cupcakes

My favorite easy dessert that requires NO COOKING is Ice Cream, and Purely Decadent is FABULOUS! I love love love the vanilla bean, cookie dough and mint chocolate.

Probiotic Drinks: Good Belly has a couple that are dairy free and are not bad, but Bio-K is pretty nasty.

Some other products I tried and REALLY didn't like:

Nearly every premade cookie and many other crackers. Daiya rice milk cheese. Rice Vegan cheese was slightly better, but only just. They sell an Almond based cheese which is actually REALLY good except in the ingredients it lists Casein Protein (cow milk protein) which really ticked me off because what's the point of making a dairy free cheese if you're going to add cow milk back into it? Tofutti cream cheese is pretty good only it's made of soy and we don't do soy either :( I was not impressed, at all, with the Bob's Red Mill's biscuit mix or pizza dough mix. The buckwheat cereal and pancake mix was just plain gross. If I remember any other brands I went through, or have a bad experience with any new ones that I try out, I'll add them to this list.


Well hopefully if you're just starting out you will have a least an idea of what's out there and won't have to waste money on products that you know nothing about! Remember to ALWAYS read labels because most things will state allergy alerts. For example, nuts are naturally gluten free, but the bulk almonds sold at Sam's club (members mark brand) state: Manufactured and packaged on equipment that is shared with wheat, dairy, soy, etc or something along those lines so because of cross-contamination I won't buy those for my family.

I feel so fortunate that more and more gluten free foods are available and believe that as more doctors understand the health problems gluten is causing individuals with sensitivities / intolerances the more we will see gluten free foods take over! Thank God we live in a time that makes it easier for us to take better care of our families. I wish you happy shopping and hope you will find it easier to go gluten free after becoming familiar with some of the brands I trust. If you ever want to email me a recipe or brand you love please do so!

Ben Age Two: Tests, Tests and more Tests!

In order to get the best idea of what's going on inside of Ben we had a lot of tests done. We sent his urine to France where peptides were detected for both dairy and wheat. These peptide levels showed us that whenever Ben consumed dairy or wheat the partially broken down proteins would enter his bloodstream and leave in his urine as peptides, which can act as opioid or morphine like drugs in Ben's body. This explained why Ben didn't seem to respond to pain like a "typical child" and showed no awareness to entering a hot jacuzzi or cold pool and would "zone out" and sit in a "fog" like state. These peptides showed us that these foods physically made him high. Children get a fix from this high which is why they go through such horrible withdrawals when you remove these foods from their diets and they have to detox.

We sent Ben's blood to Alcat laboratory in south Florida to determine which of the 75+ foods / additives in a "wellness panel" that Ben was sensitive to (he showed an intolerance to 23 foods, as well as Penicillin and red dye). We sent multiple stool samples (first collected and frozen or stored in special vials at room temperature with special solutions to keep bacteria from dying) to The Great Plains Laboratory in Kansas, where we learned that Ben's good bacteria levels were low (some were completely wiped out from all the antibiotic abuse) and one strain of a "dysbiotic" or "nasty" bacteria as Dr. Udell called it, was monopolizing his entire gut flora. In that test we also learned that his immune system was very compromised as his IGA levels were far below normal. The last test we sent away for was a stool and saliva test kit to Enterolab in Texas. This test was able to identify intolerances to wheat, dairy, soy and egg (probably the white in the egg since the Alcat test confirmed a sensitivity to the egg white but not the egg yolk). This test measures the body's IGA levels against these food proteins and any time the body produces a response greater than 10 the lab determines this to be considered a food intolerance.

I'll just copy and paste the results here because it's a little difficult to paraphrase:


"B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel (this was the test kit we ordered)

Fecal Anti-gliadin IgA    114 Units   (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA    24 Units   (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA    16 Units   (Normal Range is less than 10 Units)

Fecal Anti-soy IgA    39 Units   (Normal Range is less than 10 Units)"
The first one, the one measuring Anti-gliadin IgA is for gluten in case you weren't sure what that word meant (because I didn't) and is clearly showing an intolerance to gluten / wheat, which Ben's probably been making since birth which is why the number is so great.

So I spoke with the nurse at Enterolab and the doctor about these numbers (and taking into account what I learned from reading the Gut and Psychology Syndrome) it became very apparent that with the high wheat values most likely gluten was the first food protein Ben became intolerant to (or was born intolerant to) and as he kept creating IGA responses to it his immune system became over-responsive / sensitive and started tagging other food proteins with similar molecular structures (soy and dairy) and once the immune system is so active it becomes a snowball effect and just keeps on tagging foods.

According to what I understood from the GAP book, the walls of Ben's gut no longer have the good bacteria keeping it healthy, creating a barrier so that undigested food proteins won't enter the blood stream. If this barrier is thin / weak any food which he eats will not only not get broken down properly but these malabsorbed / digested proteins will leak through the lining of his gut walls and pass into the bloodstream, where his white blood cells attack these proteins and "tag" them as foreign invaders since they aren't supposed to be in the bloodstream. Then a signal is sent to the immune system to keep a record that every time this food protein enters the body the immune system should create a defensive response. Many individuals who have a food intolerance may not know they have one until they give up that food they are sensitive to and see the changes in their bodies (allergy / sinus symptoms, cramps, headache, fatigue, bone / joint pains, even things like infertility can be cleared up once a person avoids the foods that their body is intolerant to and gives the immune system a chance to calm down).

The nurse I spoke with when ordering this test and the nurse and doctor I spoke with discussing the results of the test spoke in depth about how children with gluten intolerances can have neurological problems when gluten remains in their diet. Children that suffer from ADD, ADHD, Autism, Schizophrenia, OCD, and Epilepsy might benefit greatly from being on a strict gluten free diet. Over 50 years ago the term "bread maddness" was coined after recognizing that some individuals would suffer from schizophrenic episodes after consuming bread. In the 1920's the Ketogenic diet was created for the only known treatment for children with Epilepsy, and surprise surprise this diet consists of a high fat, moderate protein and very low, very specific carbohydrate diet. I could go on and on about how our diets and the foods we eat affect our body's and brains, but that's not what this blog is about. I can't convince you or anyone to determine which diet is healthy or best for you or your family. I can only share what I have learned about how diet affects my family.

Our hope is that by removing the offending foods from Ben's diet we will give his digestive track a chance to heal and seal the gut lining, and by adding plenty of beneficial probiotic supplements and naturally fermented foods (yogurt / sourkrout / pickles, etc) his gut will start digesting foods properly and we can one day reintroduce some of the 23 foods on his intolerance list without them causing an immune response.

The saliva portion of this test was very interesting for me because it looks for gluten sensitivity genes, genes that are passed down from either the mother or the father or both parents. As it turns out, Ben had two copies of the same gene, which means he got one from both me and Nick. After much talk with the staff at Enterolab, I learned that the HLA-DQB1 0301 gene that Ben received from both me and Nick, this particular gene especially, has been determined to cause neurological and developmental delays. HLA-DQB1 Molecular analysis, Allele 1    0301

HLA-DQB1 Molecular analysis, Allele 2    0301

Serologic equivalent: HLA-DQ   3,3  (Subtype 7,7)The last portion of the test counted the fat molecules in his stool, which was collected over a period of three days. In this test we wanted to learn if Ben was absorbing fat. If he wasn't able to absorb fat (which is the easiest / first thing the body will absorb) then we'd have malabsorbancy issues which lead to malnutrition if his body can't absorb other nutrients. The results are below:Add Fat Malabsorption Stool Test (Fecal Fat) to panel A, B, or C
Quantitative Microscopic Fecal Fat Score    Less than 300 Units   (Normal Range is less than 300 units) 

Good news! Ben showed less than 300 units of fatty molecules in his stool so his body must be absorbing fat, and if he's able to absorb fat then he should be absorbing other vitamins, nutrients and minerals as well.

Although we did this test almost 2 months ago, I just want to add in this post that during this time Ben was hovering around 25 lbs. Over the course of the next 2 months, after going gluten free, soy free, casein (dairy free) and many other things free (apple, potato, most carbs, etc) Ben actually GAINED 5 whole pounds and is currently a beautiful 30 lbs (as of July 2011). I was so scared that if I took all of my rice products which replaced the gluten ones (crackers, breads, muffins, flours, cookies, pretzels, etc) out of Ben's diet that he'd lose even more weight but after reading my GAP book and speaking with Dr Udell I realized that Ben might start absorbing foods better once the bad fungi and bacteria die off. This is when Ben started growing (like he was still wearing size 18 month shirts /shorts and even some 12 month size shirts at age 2.5) and jumped into size 2t and 3t and his shoe size went from a 6 to an 8.5 in the past two months once changing his diet. I'll get to the mental growth in future posts...

Some might argue that diet doesn't affect the body or mental state. I like the argument that asks you to go drink a bottle of liquor and tell me what you consume doesn't affect you. Some might argue that my son would have "outgrown" these food sensitivities over time and maybe, after a year and a half of vomiting on a daily basis, his body might have just accepted the foods we fed him but I challenge that maybe he would have continued to shut down both physically and mentally. To those who argue that monitoring diets based on food sensitives is dangerous and it's better or healthier to ignore the lab results and continue on eating the traditional American diet, I'd like to point out that I'm not asking you to change your eating habits, just don't push them on my kid. I've had some very strong advice from concerned loved ones tell me that removing wheat is "dangerous" and from a Neurologist that a GF/CF diet hasn't been proven to treat Autism. I say test your theories on your own kids / patients, go ahead and do nothing, and see what happens. No offense to you if you happen to fall into any of these categories, and I'll respect those parents who chose not to change their child's diet, but PLEASE, allow me to TRY to help my kid by changing his diet. Some personalities are pro-active and when it comes to my child's health I can't just sit by and do nothing. Whether it's been proven to help or not I need to try it. As I told my sister in law weeks after first implementing a GF/CF diet, "Even if the only thing this diet does is resolve Ben's vomiting issue, then it was worth the change." For the record, it's been 5 months since my son has thrown up and that's the longest stretch he's gone since he was exclusively breastfed.

My point in sharing this post with you is to encourage you to look into all the many, many tests available and see which might best assist you with learning your dietary needs / challenges. These tests are costly, and most likely not covered by insurace so really do your research so that you can get the most knowledge from any given test. Also, when it comes to diets, I've learned that if parents with a child on the ASD are willing to try a gluten free diet most of them are unsure about the Specific Carbohydrate Diet and are afraid to give up all their gluten free carbohydrate replacements. What helped me was knowing that eventually, if I could really give Ben's body the best chance at healing and getting strong, then eventually he could eat these foods again, but I had to at least try and give this diet all I could, to give Ben the best chance of recovery, if such a thing were really possible.

As always, please speak with a qualified professional before purchasing or running any medical tests or making any decisions concerning your health or the health of your family.

Ben Age Two: The Autism Diagnosis

I've heard of a lot of children that are clearly on the ASD who have parents that are in denial. I didn't want to be that kind of parent, and as much as I knew deep in my heart that something wasn't right with Ben (it was very clear he was delayed) I also believed deep in my soul that he wasn't Autistic. Ben didn't have the major signs / red flags. I'd read through tons of lists over and over again over the past couple years and he just didn't fit the bill. Ben never toe walked, flapped arms, lined up toys, spun in circles, rocked in place, made echo sounds, repeated phrases over and over again, avoided eye contact, preferred to play alone, rejected physical attention, played with toys inappropriately, spun wheels, had obsessive behaviors, ritualistic patterns, wasn't a picky eater, etc etc etc. But he was "all boy" and very hyper, did act like a "crazy animal" in stores, and didn't speak and had poor comprehension. Once he started loosing the little bit of language he had, I had to start accepting that maybe he might be slightly affected by Autism or is on the very lightly affected side of the spectrum. High functioning they call it right? Only if he was regressing I feared he might be severely affectied in time. Once we changed his diet and cleaned up his environment we started seeing improvements with speech and his comprehension was now soaring.

During Ben's Early Steps Evaluation they measured his comprehension as more delayed then his speech. By the time we met with the Neurologist (3 months later) at the famous football team clinic (trying to remain as discreet as I can without being sued), I was sure that if the Early Steps team hadn't diagnosed Ben as Autistic, then there was no way that he would be diagnosed Autistic now that he can say a few animal sounds and responds to his name. I filled out some paperwork on the history of Ben and why our pediatrician referred us and wrote special notes besides the areas I checked off to explain how Ben had a history of throwing up / vomiting but stopped since we changed his diet. How once we changed his diet we began to see improvements with speech and comprehension.

As we filled out paperwork at the clinic for Autistic children in south Florida I couldn't help but take notice of the other children in the room and compare them with Ben. I watched a mother stroke her what looked like a 14 year old's back. His eyes were glazed over and he looked peacefully content resting against his mom. I wondered if that would be Ben one day. I wondered if the boy with the peach fuzz mustach still wore diapers. As we made our way into the hallway with little rooms, I couldn't stop watching this 11 year old girl spinning in circles on tippie toes, sucking on her hair occasionally. The funny noises this 7 or 8 year old boy kept making caught my attention next. His mother was trying desperately to keep him calm. I could relate all too well. He was loosing it and I felt tempted to tell her to take our spot if it meant she could get him seen sooner. I watched her more than I did him, empathy filling my heart. She looked so tired and stressed as she failed to find anything to keep her son quiet and entertained.
We entered our room and the highly respected, best in the field, neurologist entered the room a few minutes later and quickly looked over both Ben and his baby brother Jonathan. He asked the names of both boys and their ages and asked me when did I know that Jonathan was different then Ben. I told him they were different from birth. Jonathan wasn't colicky. They are night and day. The next statement he made will forever cause my heart to doubt what I know in my soul: "Then I don't have to tell you what you already know. Your son is Autistic," he said. "Actually, I don't know that for sure, which is why we've come to see you," I told him. In my head, I was thinking about how Dr. Udell said Ben was borderline. He was "on the fence" and I liked that. I liked the idea that Ben might have been heading down the path that leads to Autism but our intervention will keep him from regressing into a full blown child on the ASD.

I looked back over at Ben while this Neurologist went over his opinions on Autism being caused by genetics and how there are over hundreds of genes that "may" cause it and how my husband and I should both be tested in case either of us have one of these genes and therefore can determine whether or not we want to have more children. While he chatted away, I looked over my shoulder and watched Ben as he sat on Nick's lap reading a book, pointing to the dog and saying "dog. woof woof" and turning the page. I thought for sure an Autistic child couldn't do that...and how does reading a book on dad's lap make him Autistic in this doctors eyes? I heard the boy from the hallway moaning and yelping and making odd sounds - not so unlike the animal like crazy sounds Ben often makes when he's bored and in a shopping cart. But he wasn't acting that way now, he was acting "normal."

I asked this doctor what he thought about diet and how it affected Autism and gut health. He told me that children with ASD have gut problems because they are Autistic, and trying to fix their gut wont fix autism. So if a child throws up all the time it's because they are Autistic? The Autism makes them vomit? I asked him what his thoughts were on Ben's vomiting stopping after we removed wheat and dairy. He brushed it aside as if it were mere coincidence and said, "Maybe he has an allergy to milk." He went on to say how these diets haven't been proven to help and how "Autism Specialists" who claim they do help are dangerous because they prey on parents and give them false hope. I tried to tell him about some of the lab tests we had done on Ben's blood, stool and urine, and before I could go over those results he said that these kinds of tests are "bogus." I didn't want to get into an argument with him so I moved along to vaccines. I asked him if he thought children could be damaged by vaccines. I had recently done some research over at Educate Before You Vaccinate http://educateb4uvaccinate.multiply.com/ and even called Merck to find out exactly what's inside vaccines and what levels of metals are in them. I watched videos and read stories after stories of children who lost developmental milestones or even had seizures after being vaccinated. Even the FDA had to announce that the flu vaccine caused over 55 seizures last year in children under age 2. I read about how some children even died within hours after being vaccinated. Dr. Udell knows a mother who is a radiologist and witnessed a child who couldn't be resuscitated and the parents were crying, "She was vaccinated today" and the pediatrician who couldn't save the boy happened to be the pediatrician of the radiologist's son too. Her son is Autistic and she had asked him about vaccines in the past. He looked her right in the eye and ordered, "Don't say a word!" That was when she decided to seek out a DAN! doctor and found Dr. Udell. At any rate, I knew all this, so I was shocked when this Neurologist closed his eyes, shook his head like a stubborn child, and said, "It doesn't happen." "What do you mean?" I asked. "It just doesn't happen," he repeated. "So everyone who claims it does happen is lying?" I asked. "What's the point?" I pushed on. "Money," he answered. And that didn't make sense to me because although some of the parents who claim their child was damaged by vaccines sue the government or vaccine companies, most parents don't get money for posting a you-tube video or writing about their opinions on a blog. In fact, I think the vaccine manufacturers make a LOT more money promoting these vaccines and trying to silent those who speak against them, then the amount of money some parents might receive for compensation.

I realized pretty quickly that this doctor wasn't on the same page as we were and wasn't open or interested in hearing about the interventions we are making to help Ben and his improvement because of these changes. Before we left I asked him, "Dr. ________ I don't mean to disrespect or undermine your expertise here, but how do you know my son is Autistic?" He answered, "Look at how Jonathan is aware that I'm in the room. Ben doesn't even care that I'm here." I thought that was a pretty lame answer so I asked him if he was like 50% sure Ben was Autistic or was it 95%? Afterall he didn't perform any kind of test, didn't talk to Ben, didn't ask him a single question, never even called his name to see if he'd look up. Nothing. He answered, "I'm 100% sure. I've been doing this for over 20 years and I'm not trying to take away hope by giving him this diagnosis. I could be wrong. You could come back in 6 months and he could be typical, but that never happens." Tears began to flood my vision and I asked him if Ben would have to live with us forever. I wanted to know how severe was he on the spectrum. On a scale of 1-10 is he a 2 or a 7? Is he PDD, ADD, ADHD, Aspergers, aren't there different kinds of Autism diagnoses? He explained that all the different labels for ASD will no longer be used and every single delay will now be called Autism. He went on to say, "Use this diagnosis to get him help. Don't use the label to hurt him, use it to get him the services that will help him. I have hope for him, but I don't have a crystal ball. I don't know what the future holds. " He then handed us information for an orientation over at Florida Atlantic University for CARD.

As soon as we got in the car my husband and I both cried again...not sobbing, just soft tears because this was the first time we were delt such a clear cut diagnosis. "Maybe it's good to just call it Autism and stop worrying over whether or not he has it" my husband whispered. I looked back again at Ben and saw so much progress from that trip home from Whole Foods 3 months prior. He sat there smiling at me. He started babbling some gibberish I couldn't understand and then said, "eat" followed by "nore" while he did the sign language gesture for "more" and I handed him and baby brother some rice crackers to eat. "We just have to be thankful that Ben is doing as good as he is," my husband continued, "and think about how far he's already come." I agreed. "Ben is what he is, and I'm thankful we are his parents," I told him. I watched other parents dragging or carrying their children to and from that clinic and wanted to hand each of them a business card to see Dr. Udell. How sad that all of these families are told that whatever problem their child has is just part of Autism. To just accept it. Well we no longer just accept anything. We research everything and trust our gut instincts too.

Ben Age Two: Cleaning His World

After we removed Casein, Gluten and Soy from Ben's diet, as well as all the severe food intolerances from his AlCat test, we had to clean up his world. For all new parents, or especially the parents with children who are on the ASD or if your child has severe allergies, colic, food sensitivities or suffers from seizures, I would strongly recommend you read The Gut and Psychology Syndrome by Dr. Natasha Campbell McBride. I don't make any money off her books and she isn't my aunt or even a friend of a friend. The title kinda stinks in my opinion and if I could describe that book in one phrase it would be, "Everything you need to know about how diet, environmental factors, antibiotics, probiotics and vaccines are affecting our children."

I would be quoting a lot from that book on this blog, and probably will go back and quote more once I get it back from my pediatrician. Anyway, we learned that newly painted walls, new furniture, carpets (especially new ones) off gas toxic gasses in the air, toxins like fermeldyhde which can quickly overload a child's immune system. Even those flame retardant pajamas off gas fumes which are toxic. We switched out all of our cleaning products, toothpastes, shampoos and conditioners. We learned that play-doe has wheat / gluten in it, dixie paper plates and paper towls contain gluten, and most recently I was saddened to discover that my favorite scented hand sanitizers from Bath & Body Works contain Wheat Amino Acids (and amino acids are proteins) so basically your favorite hand sanitizer might as well be called a hand glutinizer! I'm slowly replacing my plastic tupperwears and sippie cups with glass or aluminum containers. We mop our floors with vinegar instead of bleach. Basically we're trying to reduce the toxic load as much as possible so that we can give poor Benny's immune system a chance to calm down so that it will ease up and hopefully stop reacting to every food he eats!

Ben Age Two: Diflucan

So after we removed wheat and dairy from Ben's diet we watched him go through this horrible, tantruming, spastic, crying, suffering from major withdrawals child for 4 or 5 days. We couldn't go out in public with him and when we had to my husband and I cried on the drive home from Whole Foods because we were so embarrassed, so frustrated, and so worried about what kind of future was in store for all of us. I remember trying to offer Ben some gluten free pretzels, a coloring book, his water, anything to get him to stop arching his back, screaming, kicking and flailing against the seat belt straps that kept him in his car seat. He wouldn't even open his eyes and look at what I was asking him / offering him. My husband yelled at me to just stop giving him attention. He told me we are going to have a very hard life. A tear rolled down his cheek as he told me that at least we would be able to experience a "typical" childhood with our second son and we should be thankful that so far, Jonathan seemed healthy. Of course, with Ben wailing in the background, Jonathan was screaming too, and I figured I might was well join in and we can all sob together on the way home. I remembered thinking that at some point Ben is going to get too big to handle and what would we do then?

Once the withdrawals past, we had that night that I refer to as "the awakening" and this is when we started to see Ben very actively trying to communicate with us, even cupping his hands on our face repeating gibberish, staring us straight in the eye. So you can imagine how scary it felt that the few words Ben had started to gain were lost after starting the VSL3 probiotic. Ben wasn't tantruming as hard or as loud, but he was having meltdowns all the time. I video-taped one of these meltdowns and I don't even have to rewatch it to clearly see that unhappy little boy who can't verbalize anything or even make eye contact when I can his name. He was zoning out again and we didn't know why. Dr Udell had a gut instinct that this was a result of yeast so we started him on Diflucan also known as Fluconazole.

The first night we gave him Diflucan we saw no reaction. We gave it right before Ben and Ben slept surprisingly well. The second night was a different ball game. Ben woke up an hour later and 2 hours after that - screaming, bloody murder. He sobbed and cried and just wanted to be held and after we got him back to sleep we did research. We wondered if this was another "die off" reaction. The second day he acted fine so we gave him another dose. This time he woke up 30 minutes later and was completely spastic. He was kicking us while we tried to hold him, took no comfort from being held, and continued to sob and wail and scream at the top of his lungs. 20 minutes of this and we got him back down and called Dr. Udell right away, and he told us that this is a very pronounced reaction so we know it's working. I've read online that when Diflucan kills yeast it's like popping balloons of acid and this acid can cause stomach cramping, which explained why Ben was curling in on himself, still moaning in his sleep. An hour later he woke up again, screaming even louder this time, unable to even open his eyes or take a sip of water. He was uncontrollable and at 10:00 at night we were about to fall apart. I texted Dr. Udell, again, and he called back and was able to "be with us" during this hard night. We gave him Motrin to help with the pain and spent the next couple hours co-sleeping with Ben in between us, whispering about how this Autism thing might just kill us all. I sincerely don't know how parents deal with their child head bashing, gnawing on their fists, having seizures all while being sleep deprived. As Dr. Udell stated in a recent post on his blog http://www.theautismdoctor.com/my-ten-top-autism-tweets/ "The Parents of children on the Autism Spectrum Disorder are the most patient people. Ever." I am going to admit right here and now that I don't think I'm naturally a patient or selfless person. In fact, I'm going to admit that I'm very impatient and often times prefer to be the selfish creature we so easily can become. Having Ben has taught me forced me to become more patient and more selfless. I think that statement is true for any parent, but especially for those who tend for children with special needs.

Long story short, the next morning we were too shaken to do another round of Diflucan and had to call it a day. We hoped that if there was a major yeast infestation the Diflucan did it's job. After that point, Nick became in charge of researching all of the meds and foods we gave Ben and continues to do so. He's become an expert (in my opinion) on which foods are inflammatory, which are not, which foods have the highest amounts of fiber, omega 3's and also what kind of diet / foods feed yeast or have natural anti-fungal properties. We have a better understanding of yeast thanks to Dr. Udell's posts The Yeast Autism Connection (Part One and Part Two) which cover the myths and facts on Yeast.

What's interesting to note is that many women take Diflucan after being on antibiotics in order to prevent yeast going out of control and causing a yeast infection, but it doesn't cause any cramping or pain for them. For us to see such a pronounced reaction, and so soon, we feel that Diflucan might have killed off MORE then just yeast, maybe some strand of yeast that we haven't identified yet and can't test for yet, or maybe some other strand altogether. However it works, we saw a progression after that and he quickly resumed where he left off and hasn't stopped progressing yet (knocking on my wooden computer table as I type on June 30th - 2.5 months later).

Ben Age Two: Glutathione and Probiotics

The first supplements we were advised to give Ben were Glutathione and therapeutic strength Probiotics. We used Essential GSH Glutathione which our "DAN!" doctor rightly called "Speech Fuel" and how it works is what made me better understand why some of these kids aren't talking. Our bodies naturally make Glutathione to help detoxify. The word "toxic" is something the parents of children with ASD become very familiar with as you begin to learn just how toxic our environment is and how these little children's immune systems are overtaxed by trying to detoxify too many things while their immune systems are already compromised. Toxic overload is the reason why you'll hear parents of Autistic children worry about things like food dyes, chlorine in swimming pools, and fluoride in water and the highly debated hot topic of vaccines. At any rate, one of the tests Dr. Udell performed on Ben during his evaluation was a muscle strength test. He lifted Ben up by the arms and Ben couldn't show the resistance to keep his arms horizontal. They flew vertical and I did this test on him every day for a while as well as with my then 7 month old who had the strength to to resist that his 2.5 year old big brother did not. We gave Ben the Essential GSH and slowly but surely he started speaking. His first word was "eat" which was super exciting for us because NEVER in his entire life had he said the word or even signed or indicated that he was hungry. Up until this point, we knew Ben was hungry when we presented him with food and he ate it. Or because he climbed in our lap and tried to eat off our plate or started "breaking down" and getting cranky and whined or cried a lot. So it was WONDERFUL, to say the least, that Ben now, sometimes, would tell us when he wanted to eat. Soon after he learned that saying the word "eat" meant he got to sit in his high chair (and watch Franklin or Mickey Mouse Clubhouse while eating) he started saying "eat" when he woke up crying at 1 in the morning or at 9:30 at night when we were trying to put him to bed. The little stinker wasn't actually hungry during these times because when we offered him food he'd just sit there and watch his show. It was at this point we removed the little tv from the kitchen and during meal times. 

Ben still wasn't consistently sleeping through the night at this point and would wake up several times screaming and would gulp down lots of water and be covered in sweat. We think this was his body trying to detoxify since we've read that the body naturally goes through it's cleansing period between 10 pm and 9 am.

On top of the glutatione that helped his body start flushing out toxins in his system we started Ben on IFlora multi-probiotic for kids which is a probiotic with 7 Potent Strains of the good bacteria that makes up a healthy gut flora. Bifidobacterium and Lactobacillus are the two bacteria that I refer to as the "king and queen" of good bacteria. This brand has 8 billion viable cells per teaspoon. After a few weeks on IFlora we put him on a supersonic strength probiotic called VSL3 which can only be picked up with a prescription. This probiotic we felt was either too strong or might have caused too much "die off" because Ben's immune system crashed while on this probiotic. He got sick (which may have been coincidence) but had a runny nose non-stop, sporadic fevers, he got really dark circles under his eyes, lost his appetite (which is normal when you're sick too though) and the few new words he had gained during the weeks on GSH and IFlora (like "Up" and "Papa" and was even just starting to try and put two words together like "Out" and "side") so we stopped the VSL3. Our DAN! doctor felt that when these kids start acting unlike themselves or stop progressing it's due to a yeast overgrowth so he prescribed Diflucan and that was a scary / wondrous experience which I'll share in the next post.

In this post though, I want to make two little clarifications.  One: Again, I am a mom, and I am sharing OUR EXPERIENCE in hopes that other parents might learn from our situation as to what did and didn't work and what to expect if while UNDER THEIR DOCTOR'S CARE they should experience the same thing. Two: Florastor is the most common, #1 recommended "probiotic" by the traditional pediatrician. I'm not sure why it's even allowed to be called a probioic because it doesn't contain the beneficial bacteria that makes up a probiotic. Florastor contains Saccharomyces boulardii lyo which isn't even a good (or bad/ dysbiotic) bacteria. Saccharomyces is a YEAST and as I've already mentioned in my previous posts, we already had a concern about the high levels of yeast in Ben's stool test so to learn that the probiotic our pediatrician's office recommended to us wasn't actually a probiotic of beneficial bacteria but of a yeast, I was confused and upset. From what I've read, this yeast in Florastor isn't even naturally found in a humans healthy gut flora. It's foreign and deliberately ingested and in theory it will kill off / eat the bad yeast that grows out of control while on antibiotics. I have a few problems with that theory and only want to reintroduce the good strains of bacteria that are essential for a healthy gut flora which is why I will NOT recommend Florastor to any of my family or friends nor will I use it for my sons. Additionally, before I knew what to look for in a probiotic (and was just trusting what any doctor suggested before doing research) I gave Florastor to my at the time 7 month old Jonathan, because he had been on two consecutive rounds of very strong antibiotics and had developed 8 explosion diarrhea's in a single day as well as a spotty leopard like diaper rash that wouldn't go away after every butt cream on the planet. The three times I gave Jonathan Florastor he vomited violently for hours afterward. I'm not sure if he was puking up the yeast or if he had a reaction to the wheat / dairy that might have been in the probiotic. Regardless, I had a BAD experience with it so do your research on any antibiotic or probiotic you are about to start your child on and AS ALWAYS speak with your physician before changing or supplementing your child's diet. I am a mom, not a doctor! 

Ben Age Two: Part Three

The next morning I brought in a new nasty, mushy diaper of Ben's to the pediatrician's office. I asked the "fill in" doctor to have this sample sent to a lab. I wanted his yeast levels retested. The pediatrician, I'll call him Dr. Fill, explained, in an almost bored voice, that yeast is not something to get worked up about. "It's present on our skin and in the air. It's suppose to be in our stool." I argued that the lab said the levels were high. I wanted to know if they were normal now. My husband asked the doctor about a Gluten free / Casein free diet. Dr. Fill said "it didn't work" and "there was no scientific evidence to support it." We asked if he could recommend a nutritionist or a dietitian and he said, "no" he simply "couldn't." He wrote us a few scripts for a neurologist and a gastroenterologist and admitted, "I don't know your son" therefore he "can't help" - WHY would our doctor office set us up with a doctor who can't help us if he doesn't "know" our son? Couldn't he look through his charts or something?

I had remembered from Jenny's books that what we needed was a "DAN!" (Defeat Autism Now! doctor) and called around. Our current pediatrician Dr B was still out of town so Nick had to speak with Dr U (the first pediatrician who had pressured me into giving ben all those vaccines in one visit) about our desire to meet with this "DAN!" doctor.  She "strongly discouraged" us to meet with this doctor for a second opinion. She said that we would only need to seek treatment from a DAN! doctor if we were desperate. My husband and I agreed to see the doctor against her advice. We were desperate! What parent isn't desperate when they feel they are losing their child to Autism? We made an appointment later that day to meet with a DAN! pediatric specialist. His name is one of the only doctors I will actually post because I am so impressed with him and hope that if you live in the South Florida area you will seek him out if your child is sick and has gut / stomach issues, neurological issues, or developmental delays. I am honored to recommend Dr Brian Udell, MD FAAP and you can check out the website for his clinic at http://www.childdelv.org/ . 

Dr. B was STILL out of town so we had to met with Dr. U the day after the 3 hour evaluation with Dr. Udell. Dr U was very close-minded about our evaluation with this doctor. Without even knowing who he was, she said, "he's not a real doctor if he's a DAN! doctor." When Nick attempted to tell her what this doctor shared with us she cut him off and said she "doesn't care to hear" what this doctor thinks and she "uses the term "doctor" lightly here" and apparently didn't care what we learned about our son. When we tried to express our thoughts on what's going on with Ben she said she "doesn't want to hear our thoughts" she just wanted to hear us recite Ben's history - which should have already been in his charts. She asked us to go over the history of Ben's throwing up over the past year and when we started to see a regression. We gave her the history and then I told her I wanted to have his blood tested for food intolerances. She explained that she couldn't draw his blood for the AlCat test I ordered, paid for, and brought into her office. The test covers a panel of 50+ foods and 20 additives. I had ordered this kit prior to our DAN! appointment and hoped our pediatricians office would be able to draw Ben's blood so we could ship it out that day. Dr. U explained that she can't draw blood for the test and that their office provides a food allergy test, which is covered by insurance, but it covered less than 20 foods, and zero additives. The test our insurance offers covers allergies, not food intolerances, but she didn't seem to know the difference. She then referred to "gluten" as "glucose." Clearly, she is not familiar with gluten, the gluten diet, or how gluten affects the digestive track and the brain if a person is intolerant or sensitive to it or isn't able to break it down completely.

After explaining Ben's regression, how he no longer can point to his body parts as he once knew how to when asked, hasn't referred to us as "momma" or "dadda" in months, and no longer can make the sounds animals make (ex: cow says "moo") she later asked us if Ben knew his last name. I was confused by her question. I had just explained that Ben doesn't respond to his first name and has lost most of his vocabulary. She told us that we need to teach Ben his last name, because "it's important." Clearly, she wasn't listening! If Ben is regressing, can't identify his own parents, doesn't respond to his own name being called, has never once even said his own first name "Ben" how in the world are we suppose to teach him his last name? I feel like she might has well have told us to have him memorize his address, phone number and social security numbers!

During this appointment, Ben handed Dr. U a toy snake. She responded in a hushed voice, "An autistic child wouldn't hand me something or make eye contact" and I thought, wait a minute, does she not understand that there is a wide spectrum of Autism and some children are severe and others aren't? We saw a youtube video of a child who is autistic who could make eye contact and hand over toys! She continued with Ben's 30 month exam, while Ben was crying and throwing a fit about being examined. Dr. U asked if his cough has always sounded like a barking seal, sounds like "coop" she said or something that sounds like that word. I told her he's had green, yellow tinged snot draining from his nose for a week straight. Dr. U then told me that Ben needs a flu vaccine. I told her I don't want to give him a vaccine right now because he's sick. She responded, "He's not that sick." Again, she wasn't LISTENING to me, and just like that first visit, I was feeling pressured to do something I wasn't comfortable with. I told her to ask my husband because I didn't have the energy to explain why I'm not giving him a flu vaccine when he shows signs of being sick (after she had just acknowledged a cough, he's got a runny nose, and his yeast levels might be out of whack - I was still waiting for the results of the second stool sample.)

For the record, Dr. Udell's evaluation places Ben "Pre-Autistic" with borderline Autism Spectrum Disorder. Dr. Udell had us send samples of Ben's stool and urine to labs which confirmed a leaky gut, his inability to break down casein and gluten properly, his urine showed high levels of gluten and casein derived peptides (which are like morphine to the brain) which explained Ben's mental fog. His stool tests also revealed an extremely low IgA level which explains why his immune system was so shot, as well as low and non existent levels of the good bacteria in the gut and a high level of a dysbiotic or "bad" bacteria in the gut. Interestingly enough, this bad bacteria is resistant to the antibiotics Ben was on. The AlCat tests confirmed over 23 food intolerances and a severe reaction to Red Food Dye and to Penicillin. Surprise! So that's why the antibiotics weren't working!! Oh and my mother, her mother and her two sisters can't take Penicillin so if only I had known to ask the doctor if maybe, just maybe the reason they weren't working was because my family has a history of having severe reactions to this antibiotic, maybe Ben wouldn't have had to go through multiple rounds for a simple ear infection.

Back to Dr. Udell's evaluation, Ben failed simple resistance / strength tests. He did some pointing but couldn't say any words. He failed to point to an object when asked. He failed to follow a simple command. He also spaced out for a good 40 minutes where he was in his own world, eyes glazed over, unresponsive to his name being called, completely lost in "la la land" aka the world of Autism. Dr Udell spent just over 3 hours with us, evaluating Ben and explaining how Autism sets in and what treatments are being used, which ones he believes works, etc.

In a nutshell, his immune system was very compromised, he was given antibiotics which he's not only intolerant to, but wiped out good bacteria levels and left bad bacteria resistant to antibiotics. Ben isn't digesting foods properly is malabsorbing food as we can see whole chunks of food in his stool, he's malnourished, his stools are always on the loose side and very foul, he's got dark circles under his eyes, he is mentally frustrated a lot and probably emotionally upset as he moans and groans a lot, on top of being physically weak and sick often.

Weeks after the second stool sample I had asked Dr. Fill to be tested for yeast, Dr. U called to give me the results. At first, she said his results were normal. When I asked her to tell me the specific levels of yeast in both the first and second stool cultures (I wanted to compare the numbers / levels myself) she admitted that the yeast levels were never tested for in the second stool sample. I was told the first stool sample showed "many" yeast levels and just like Dr. Fill, Dr. U insisted that yeast is normal and is present on the skin and such and that it was frustrating for her that I was "working against her" and that I need to work with her. I didn't understand how I was working "against" anyone. I'm working FOR my son. She was clearly upset that I hadn't seen the gastroenterologist she had referred us to or had made the appointment with the neurologist at the Dan Marino center. I tried to explain that we already spoke to a gastroenterologist (after our first visit with Dr. Fill) and that the only way to determine if Ben had a severe gluten intolerance is to take a biopsy to learn if he had celiac disease. This test isn't always accurate as it might only show a true allergy, not necessarily an intolerance / sensitivity and it's very invasive. If the biopsy were to confirm celiac the treatment would be to remove all gluten from his diet - which we already made the decision to do that. We didn't need to put Ben through an invasive surgical procedure to possibly confirm something that we we already wanted to do - eliminate wheat. However, I tried to please Dr. U's request and called her gastroenterologist and spoke with his office. By this point Ben had been gluten and casein free (and had not vomited ONCE in 26 days - when he use to throw up almost daily) and I was told the same thing that Nick had already learned about what a gastroenterologist can offer: A blood test (to confirm if he has the gene for celiac - which I know he does because it runs on my mother's side of the family). I explained that Ben had been gluten free for 26 days, and his vomitting ceased the day we removed it from his diet. If he were to have the biopsy done, I asked if he would have to be put back on gluten. I was told, yes, for at least 1-2 months! Otherwise the results would be a false negative. And if they were positive? All wheat / gluten would have to be removed from his diet. The procedure is a moot point and we don't see the purpose in putting Ben through that.

I then called the Dan Marino center and scheduled an appointment with Dr. T and the earliest they could see us was May 5th. In the meantime we had Ben on very strong probiotics, first VSL#3 then back to IFlora. We also started feeding him foods that have natural probiotics in them (coconut kefir, sourkrout, coconut yogurt, naturally fermented pickles, etc). We continued to keep gluten and casein out of his diet and he has yet to throw up, or even gag, since we eliminated those foods from his diet. His focus / attention span is so much better, old words returned, new words began to develop, we saw less tantrums, Ben started sleeping better at night, and was generally much happier. His preschool began to teacher report that his aggression improved, he has a great appetite and no longer gags / throws up. She said that for the first time he's participating in story time, tries to sing during circle / music time, and is usually a great napper. His speech therpist (through Early Steps) cannot believe the transformation from the first session (where he was nonverbal and flapped his hand "bye bye" most of the hour she was there, and could not hold eye contact or his attention) the progress she saw in weeks normally took months. The family coordinator through Early Steps came by to observe him said he's met all of the goals they had set at his first evaluation in just 4 sessions, which is unbelievable. Normally she said they expect this kind of progress to take 3-6 months. Ben didn't respond to his name being called during the first two sessions (which took place weeks after his tubes were placed in his ears so I'm not convinced that his hearing was ever an issue) and now looks up to his name being called usually after the first time. Most of the family who saw him noticed a significant change and more than a few stated that he is "not the same child" as the Ben they once knew. During these weeks of progress I also have to report that Ben starting lining up toys / puzzle pieces / stickers, which I had never noticed before. He also did this hiccupping sound whenever he was upset which Dr. Udell explained was a verbal stim. These are common Autistic characteristics, both of which have almost stopped completely around 3 months after changing his diet.  

I intentionally took a video clip of Ben at the beginning of March having a light meltdown. He was standing the middle of the family room just staring at the sliding glass doors, crying - no tears - just this "moaning and groaning" and for no apparent reason, he had a mini-meltdown as I call it. At this point he had the tubes placed in his ears which we thought would solve his speech delay, and yet he was drastically regressing. He went days without saying a single word. He couldn't point or say yes or no. He's never been able to say yes, and would attempt to say, "bow" for "no" I think.

26 days after that video was taken I took another short video of Ben being prompted to say words while looking through flash cards. What was exciting for us to watch was how without a prompt knew to make the appropriate sound/ gestures that go along with the picture / word.

Ben also started showing affection around this time. In the past, although he would want us to "hold him" he never actually walked up to "hug" us and only rarely and randomly gave us a kiss (I got maybe 3 or 4 kisses in his whole life). When baby brother Jonathan was born, Ben kissed him every chance he had - which I loved but also envied because I wanted love too, but in the past few months he didn't seem to notice if his brother was even in the same room. On April 10th Ben kissed Jonathan goodnight, on command, and gave me as many kisses as I asked for and continues to offer affection whenever asked, not yet without being prompted though as of June 2011.