Thursday, June 30, 2011

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! 

Friday, June 24, 2011

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.

Ben Age Two: Part Two

The following Monday Ben had tubes placed in his ears and we were so hopeful this surgery would cure our problems. We thought Ben was trying to say as many as a dozen words the first day, but the days following his attempts at communication declined. By Thursday, Ben had very poor eye contact, wasn't able to focus, and didn't respond to his name being called by me or my uncle. I remember that evening very clearly. My aunt had caught a baby lizard and I was trying to get Ben to look at the camera and say cheese but he was too absorbed with the reptile. I kept repeating, "Ben look at mommy! Ben say CHEESE!" but it was a wasted effort. He never looked up and 10 minutes later, when my aunt was setting the lizard free on a tree, I listened to her explaining to Ben, "The lizard is going bye bye now. He's going home." Ben started randomly saying, "Cheese" over and over again. My aunt, pointed to a bug and said, "Do you think he's going to eat the bug?" But Ben kept saying "cheese." My aunt asked, "Oh you think the lizard wants to eat cheese?" And I cringed. She was over-reaching and Ben had no idea what she was saying, and I knew he had finally just made the connection that I had been asking him to say the word "cheese."

He threw up his dinner that night - as usual - and just before bed my helpful and good intentioned hubby made him an instant bowl of microwave mac and cheese and got the whole bowl down. We put him to bed and I asked my dear hubby to watch this u-tube video about Autism. In this video, the interviewer is an uncle of an autistic boy and he asks his nephew (while the camera is rolling) to look at the camera, and says, "when I ask you how old are you, you respond, "I'm seven." " The interviewer looks at the camera and says, "My nephew has autism. How old are you?" he asks the boy, and the boy looks up at the camera and says, "Cheese." It struck a loud chord in my heart. I could see Ben in this child's shoes a few years down the road. Hubby, who up until this night still insisted that Ben was "fine", watched the video and made a connection I might have never seen.

He began a google search for "Yeast and Speech Delay" then "Speech Delay and Autism" then "Autism and Yeast." Immediately it became very clear that all of the antibiotics Ben had been on had continued to destroy the bacteria (good and bad) that keeps yeast under control. Together we read for hours about how diet can play a huge role in yeast, speech delay and Autism. We talked about how maybe the food we've been feeding him has been hurting his belly, possibly the source of his colic, maybe even contributing to his mental developmental delays. Immediately, Nick decided, "We're going to remove all wheat /gluten and dairy / casein from Ben's diet." "Okay," I agreed right away. I was scared but also relieved that finally we were going to do SOMETHING. Maybe this would affect his vomiting. "I want to go wake him up and shove my finger down his throat to get all that mac and cheese out of him," Nick said. "It's killing me to know this could be why he's been so sick. I'm not going to sleep tonight," he added. I told him that we can't dwell on the past, we can only work on now. From here on out. I went in the kitchen and put together my first gluten free (wheat free) and casein free (dairy free) morning snack, lunch and afternoon snack for Ben's school the next day. I wrote a long letter to the director of his school and his teacher explaining his new diet and how strict we were about making sure he didn't get a single cracker from a classmate.

The following day we made an appointment with our pediatrician Dr. B, who was out of town so we had to see a fill in.

Thursday, June 23, 2011

Ben Age Two: Part One

When Ben turned two he started Preschool. We hoped that a school setting with peers his age would offer him the environment for his vocabulary to just "explode." Although I think he was happier to have the routine and structure that was lacking at home with a sleep deprived mother and 2 month old baby brother, his speech wasn't blooming the way we had hoped it would. In fact, it was declining. He no longer would say what sound this or that animal made. His comprehension also seemed to be getting worse. We scheduled to have an evaluation at Florida's Early Steps to see just how far behind or delayed Ben was and if he qualified for any services.

Meanwhile, the germs and colds continued to blossom and took over the entire family. Ben was constantly sick and went back and forth between double ear infections that took 3 rounds of antibiotics to clear, to stomach viruses (possibly Rota) that caused him to loose his appetite and vomit non stop for days at a time. Ben got REALLY skinny and we were very concerned. Unfortunately with clothes on he looked normal, but if you saw him running around with a diaper on, you'd know he was sick. His pediatrician never took all his clothes off so he didn't think he was "that skinny."

I could count his ribs on his back and his chest and even see the skin pulsing where his heart was. His knees and shoulders were very boney. He was over 2 years old and was still wearing size 9 month or 12 month shorts and t-shirts. I was able to use his 4 month old brother's size 2-3 Newborn Diapers on him.

 

 I started buying these really fattening health drinks like Pediasure or Ensure and adding whole milk, ice cream and even olive oil straight into the shakes. At Ben's lowest point he weighed 20.5 lbs and if he lost any more weight we'd have to take drastic measures, something like feeding him nasty formulas through tubes, I think. I added globs and globs of butter to his mac and cheese and when he threw it up we'd make another bowl and force it down. I bought the fattest, highest concentrations of ice cream and any cookie, crackers or dairy products that were made from whole milk with high fat contents. I remember scolding my brilliant hubby for feeding Ben broccoli. Why fill him up on something with no calories or fat!? At least pour butter and oil and cheese all over that broccoli!

After Ben's 3rd ear infection that took 3 rounds of antibiotics to clear, (so he'd been on 9 rounds in less than a year) and the last round was always a three day series of shots in the butt, we had a scary poopy diaper. His school teacher showed me how pigeon blood red it looked, and it was extremely mushy. I took the diaper to his pediatrician's office where they immediately tested it for blood. It came back negative, thank God. They sent the stool to a lab and confirmed that it wasn't blood, and the only unusual marker from the lab report was a high level of yeast. We were told to put Ben on the probiotic Florastor.

Because of these chronic, persistent ear infections, we went back to the ENT. She said he had fluid in his ear and didn't want to perform a hearing test because she knew he'd fail it. Looking back, I don't know if I believe this, but we were desperate for help, so we scheduled to have tubes put in his ears the following Monday. Just before the ear surgery, we finally were able to make it to the Early Steps Evaluation. We had to keep canceling because Ben was always sick on our appointments. The evaluation was extremely thorough. They had a team of four different specialist working with and evaluating him. Speech, Occupational, Behavioral and an Autism specialist. He played with toys appropriately, but had poor sustained eye contact, couldn't follow simple instructions, had little vocabulary and his comprehension was even more delayed than his speech. Ben showed a few "red flags" for Autism, like his regression in speech (which we contributed toward his chronic ear infections and believing he just couldn't hear) and he didn't respond to me after I called his name 8 times in a row. He qualified for free speech therapy through the state.

Ben: Age One through age Two

I have to back up just a tiny bit. At 11 months old Ben went on a nursing strike and no longer received breast milk. He randomly threw up different baby foods and refused to drink cow milk altogether. Shortly after his first birthday we moved to Florida. We had to rent a tiny apartment while waiting for our NC house to sell.

We brought Ben into a new Pediatricians office, now that we were back in Florida, for his 15 month old check up. The doctor reviewed his records and said he was behind on his shots and that she had to play catch up. I'm going to call this pediatrician Dr. U so that I don't get sued or anything. I told her that our old North Carolina Pediatrician never gave more than 2 shots at a time. I asked her if I could break up any shots he needed. I knew he needed the MMR, and that morning my husband firmly told me, "That is a big shot, Ben is ONLY to get that shot, okay?" But this new pediatrician was very pushy. She told me that he needed these shots to go to school. That it's a disservice to a child when parents pick and choose shots. So I very reluctantly agreed. I definitely felt more "peer pressured" then I ever had in my life and hated that my son was the one to suffer for my lack of a backbone. He received SIX vaccines that day. Shots were given in each arm and two in each leg. In a single visit his immune system was forced to deal with 11 weakened, dead or live viruses: Diptheria, Tetanus, Pertussis, Haemophilus, Influenza, Hepatitus B, Measles, Mumps, Rubella, Varicella, H1N1, as well as all the preservatives, metals, and other toxins like formeldahyde inside each needle. Many do not know, as I only found out recently, that these vaccines are grown in human cells, animal cells and yeast. Also, when someone catches a disease like Rubella (Chicken Pox) or H1N1 (Swine Flu) it's from breathing in that disease or touching it and wiping your face or eyes. The disease enters the body and goes through the first series of defenses, like the mucus in the nose, mouth, throat, then the acids in the stomach, etc. But in a vaccine, the weakened or dead virus skips the many stages that the body would normally go through when dealing with a disease, and the disease is injected straight into the blood stream along with all the other toxic ingredients, which is how it almost never happens naturally in nature. So had Ben been exposed to any of these things: The virus, the metals, the yeast, the formeldahyde, etc, in a normal means of exposure his body would have better been able to handle and detoxify these foreign agents, but instead they were ALL injected right into his blood stream with direct access to his brain. FYI The modifyied weakened viruses in shots have been found in spinal fluids and in the brain of children. That is a fact. That issue asside, I could be wrong, but I don't believe schools will turn away a child that hasn't received the Swine Flu H1N1 vaccine by age 2, or the influenza or Chicken Pox vaccines. And I also believe there are personal or religious wavers that parents can sign if they chose not to vaccinate. Anyway...

During that visit Dr. U asked me if Ben had 3 words and I told her Ben said, "dah" for dad, sometimes, and "duh" for duck and for anything else. That was it. She told me she needed 3 words, but he only had two and one of them he used for everything. Ben randomly mumbled something that sounded like "wasstha" during this conversation and she said, it sounded like "What's that?" and checked off that he had met his 3 word mark.

I also discussed my concerns over his throwing up, which was now multiple times a day, and she ordered an upper GI exam. The results came back inconclusive so Dr. U put him on reflux meds. He still threw up, just not quite as much or as often. After a few months we took him off them because we saw no difference.

I left that appointment and sat in the parking lot with my little Benny already asleep in his safe car seat. He looked so peaceful after crying so hard, and it killed me to know his little body was at war with all the "stuff" inside those vaccines. I cried. I cried hard. I called his old pediatrician in North Carolina and asked if I'd made a horrible mistake. I was told to find a pediatrician that I could express my concerns to and felt comfortable communicating with so that I wouldn't feel like I was being ignored or pressured to do things I wasn't comfortable with.

A few months later Ben said "doh" for dog, "tat" for cat, and "ight" for light, with an occasional "cookie" "nana" for banana and even once a perfect, "cracker" but definitely didn't meet the vocabulary numbers for an 18 month old. Our new pediatrician, I'll call him Dr. B told me that these numbers are only suggested guidelines, and every kid develops at their own rate. Ben still didn't call for his parents though. No "dadda" when he saw him come home from work. No "mamma" when he was sad or scared or hurt.

Around this time, Ben's throwing up started to become a real problem. We went on a family Disney cruise and I started a log of when he'd throw up, what we had fed him, etc. He threw up 5 times in one day. He wasn't sick. He didn't have a stomach flu. He had no fever or any other symptom. He ran around with a smile on his face. Mostly while eating, he'd puke up whatever we fed him, and then instantly after puking he'd keep on eating. No tears, meltdowns, or hysteria after throwing up - a usually frightening and unsettling experience for a small child to go through.

My husband and I fought a lot about why Ben was throwing up. He insisted he was "normal" and he'd "grow out of it." I insisted that it wasn't normal, and that if he had to throw up daily, he'd want to stop it. Nobody should live like that and just because Ben can't talk or complain doesn't mean it should be ignored. We would bicker over the most stupid reasons for why Ben threw up: The texture of the food, he fed him a forbidden fruit - watermelon, I didn't cut up the food enough, the bite of bread was too big and got stuck in his throat, the french fry was too salty, the chip / cracker was too sharp / crunchy (everybody knows that Wheat Thins are difficult crackers to eat, right?). One of the worst memories I have of this time was after Ben played hard at a MyGym. He hadn't had dinner yet and we picked up some chinese food to go. While waiting I refilled his sippie cup with cold water from a water cooler. Ben chugged that water down, he was sweaty from playing so hard. As soon as we started driving home, it was now dark out, Ben started to projectile vomit the water. Following silence, I heard the splat and splash as Ben violently threw up the water across his body, hitting the back of the driver's seat, just behind my husband's head. I began to yell, "He's throwing up!" A second heave started shooting more water across the car. "He's STILL throwing up!" I yelled louder. From the brief flashes of light from other cars or light posts I could see Ben's eyes were watering, his face was turning red. He barely had a chance to catch his breath before he heaved again. "NICK! He's still puking! He can't BREATHE! Pull over!!!" "What did you give him?" my husband demanded - I already knew what was comming, I already learned which foods I couldn't give him in the car because they'd guarentee a vomit shower, only I hadn't given him anything. So I told him, "I didn't give him anything! He's throwing up the water! THIS ISN"T NORMAL!" I insisted for the hundreth time. I'll never forget the reasoning my husband gave me for this: "The water was too cold!" I wanted to slap him. No, I wanted to punch some sense into him. A few days later Ben ran into a TooJay's restaurant, right up to the hostess, and before eating or drinking anything, he threw up on her feet. Just bile. Ben was very sick and I knew something was very wrong. We started him back up on the reflux meds, stronger ones this time.

Ben's throwing up continued to the point where we just accepted it as a "easy gag reflex" and life went on. I had conceived the day we moved back to Florida and when Ben was 22 months old I gave birth to our second son Jonathan. I knew better from my experience with dairy and removed all dairy from my diet weeks prior to that delivery and had been medication / antibiotic free for a few years since I couldn't take any while pregnant or nursing Ben or pregnant again with Jonathan.

At first Ben was all into his baby brother. He loved to kiss him, all day, to the point where I'd have to tell him no more! It was cute that he loved him and showed him affection, but I was honestly a little jealous. I could count on one hand the number of times Ben had given me a kiss (with fingers to spare), and most of the family was lucky if they had received even one kiss from him. He also didn't give hugs. When I thought of a child with "Autism" I envisioned a child rocking in a corner, or spinning the wheels on a car, flapping arms, twirling around in a circle. I honestly didn't believe my sweet Ben was Autistic. I remember when my sister in law mentioned that Autistic kids have "stims " these self stimulation behaviors, and she asked me if Ben's throwing up could be a form of a stim. I thought that was worthy of mentioning to his pediatrician, who quickly told me what I wanted to hear: "No. Absolutely not." He then asked me something that I thought was odd. He asked ME if I thought Ben was Autistic. I first answered, "I'm not the doctor. You are." and Dr. B explained that Autism is a social disorder and Ben was very much aware that Dr. B was in the room and was making good eye contact. But we still didn't know why Ben threw up or how to stop it. Ben was also very behind in his speech, so we had him seen by a Pediatric Ear Nose and Throat Specialist. She performed a hearing test, an x-ray, and examined his ears by looking in them with her special equipment. She even did something with blowing air or looking for bubbles in the ear drum. Ben's ear anatomy was 100% perfect and he passed the hearing test with flying colors.

Other than the throwing up, Ben was a pretty healthy kid. He had only been sick twice in his first year of life, both times he had caught a head cold from his sweet cousins, but nothing serious. Then, just before Ben's 2nd birthday he got his first sinus infection. No ear infection, but the rounds of antibiotics began. He didn't / couldn't take / finish that first round, so when it didn't clear up he was put on stronger antibiotics. I knew that it's bad to start antibiotics and not finish them, or take all of them, so every time I had to administer them I literally had to pin him down, squirt the meds down his throat with the plastic syphin, and when he gagged and tried to throw it up, I had to place my hand over his mouth and keep his jaw shut, blowing in his nose so that he had to swallow. It was awful, but I honestly believed he needed those meds or else he would have perminent hearing damage from an ear infection that wouldn't go away unless I got those antibiotics down his throat. A few months later Ben turned two and that's when Ben really began to get sick.

Ben's birth through year One

Moving along, Ben was extremely colicky and wasn't able to gain weight well at first, and after 2 months of non stop, head splitting, drive you insane screeching and screaming, an on call pediatrician advised me to "lay off the dairy" after I told her Ben wouldn't nurse for 8 hours straight and had screamed for the past 6 hours straight. This was my first clue that something wasn't right. I accepted this milk intolerance and removed all dairy, specifically casein - the protein found in dairy, from my diet. You must become a master of reading labels on everything because it will shock you at how many non dairy things have casein in it (like frozen waffles, breads, or frozen dinners). Ben's colic reduced by at least half and he met all his milestones on time. He smiled by 2 months, laughed, crawled, and even walked early.

Around 2 months old, I read Jenny McCarthy's book Louder than Words. I had already been a fan of her Belly Laughs, Baby Laughs, and Life Laughs books but I didn't want to read her book about her journey with Autism and her son while I was pregnant. Months after my colicky baby was born I went back to Borders and bought it. I was heartbroken for her and her son Evan and immediately went back online and ordered Mother Warriors. A day or two later I finished both books and called my pediatricians office with concern and anger over this whole vaccine issue. Our pediatrician told the nurse to tell me to read Autism's False Prophets and I immediately ordered the book and read it. It was disturbing, informative and very persuasive. I had a choice to make because there were two very different point of views on the issue of vaccines. One side claimed they can damage kids, the other side argued that they are safe and save lives. I put my faith in the book written by a doctor, not a celebrity. I decided to basically disregard everything I had learned from Jenny's books and all of the experiences those mothers had gone through. I told myself to believe that those women just needed something to blame for their kid being sick.

Because of my indecision to vaccinate while reading these two books, Ben missed the time window for the Rota Virus vaccine, which is given orally and only administered at a certain time. If you miss the first deadline you can't get the vaccination against Rota for your child, even though they give it two more times. It's given at something like 3 months, 6 months and 9 months. I would forever be in fear of Ben coming down with this life threatening vomiting and diarrhea stomach virus. Other than this vaccine he received every other vaccine, only never more than 2 at a time during his first year, and never when he was sick.

By 6 months of age we started integrating baby jar foods into his diet. This is when the spitting up, or throwing up started. I think spit up should be defined as enough to fill a teaspoon, and dribbles down the chin. If your baby projects liquid or food across the room, or could fill a coffee cup or makes a puddle across your floor, this has moved beyond spit up into the definition of vomit or throw up. My dear hubby thought I was "overfeeding him" or "feeding him too much or too fast" so I gave smaller bites, over a longer period of time. Ben still threw up once in a while though and I couldn't pin point it to any specific food. Sometimes he'd throw up the apples, other times the bananas and oatmeal.

At 1 year of age I was concerned about his speech. He still couldn't say momma, dadda or anything specific. We then moved from North Carolina to Florida shortly after his first birthday and that's when the throwing up really started to get worse. My wonderful hubby thought that the cheerios that fell on the floor that Ben would eat off the carpet was making him sick, or that it was something about the apartment (I dismissed this latter argument, but after lots of reading and research and looking back at the situation, I think of the paint fumes and cleaners in the carpets, the chemicals the new carpet off gas, and admit maybe my smart husband was onto something). Ben could point, clap, play with toys appropriately and mostly slept through the night and napped well, although a few times we had to redo the "cry it out method" because at 2 in the morning, when your baby / toddler won't cuddle and sleep in mom and dad's bed, and neither wants to play, eat or sleep in the swing (yes we continued to try and use the swing when he wouldn't nap or fall asleep) Ben had to cry himself to sleep in his bed.

Teenage Years and Starting a Family

At age 16 I discovered Juice Plus+ at my brother's boyscout fundraising auction. This product dehydrates 17 fruits and vegetables into a powder form which is then placed in a capsule or gummy. I won that auction and took Juice Plus pretty religiously for years, even becoming a rep at one point. I loved the idea that I didn't have to eat those awful veggies, and who could afford or want to eat that kind of variety on a daily basis? Not me. I saw am immediate change in my bowl movements (sorry to be gross but it's important because later on I would learn the impact of food on our digestive track) and even some impressive changes in the family members I got on the product. Still, besides my gummies, my diet was very poor in nutrition.

It's important to note that many would describe me as a hypochondriac. And it's probably a fair description. When I first learned about the AIDS virus in high school, I truly believed I had it - my immune system was weak, I felt tired, and always had a cough or runny nose - the fact that I didn't know anyone who had AIDS, was a virgin, who'd never tried smoking let alone shared needles, meant little to me. I had the airborne version, I was certain.

I also loved drugs - legal ones that is. If I had a little sniffle I was taking Clariton, Allegra, Benedril. A scratchy throat, get me some Sudafed or NyQuil. I got sick often, or had allergies and remember getting strep throat 3 or 4 times in a single year. I took lots and lots of antibiotics. I worked in a preschool while earning my masters degree at UNCC and took a round of antibiotics every other month - for possible ear infections, stomach viruses, strep, fever, head cold, you name it.

Around this time my loving husband and I decided to try and have a baby. I had been on the birth control pill for several years. I actually tried to conceive the first month I got off the pill (if I could do it over again I would have been off the pill for at least 6 months before trying). I was so excited to have a baby and conceived on the 3rd month after getting off the pill. Birth control pills not only trick the body into thinking it's pregnant, which messes with our hormones, but it also affects our gut flora (the good bacteria in our gut). I continued to take my Juice Plus+ throughout the pregnancy but didn't really eat that well. I never had morning sickness but I did crave milk...lots and lots of milk. FYI, Pasteurized milk (unless organic and from a raw organic source) contains antibiotics which are given to the producing cows, and has been completely modified during the heating process, as well as many other issues that effect a person's gut flora. As we all know, antibiotics kill bacteria - what we don't always think about is that it kills the good and the bad bacteria, and we need those good, probiotic beneficial bacteria in order to digest food properly, maintain a healthy immune system, etc. Anyway, I drank milk almost more than water during my pregnancy. Literally, a half a gallon a day towards the end.

I was surprised and relieved to learn during the multiple tests during pregnancy that I was overall pretty healthy. No STD's (thank God!), no gestational diabetes (you'd think 3 dozen publix chocolate chip cookies the week before the glucose test would have shown up somehow?) my iron was always a little low, but everything was normal. Side note - most recently I have read that ultrasounds, specifically the 4D kinds may have a negative impact on baby's developing brain, and this may contribute to developmental delays later on. For the record, we had a 4D ultrasound at my doctor's office during my pregnancy with Ben and even got a DVD of baby Ben moving around inside me. The baby's heart rate, positioning, weight, and growth were all perfect.

You can read about Ben's birth over at my sister blog, "TheVeryBreastThing.blogspot.com" if you are interested. Basically, it was long, painful and just plain horrible birth, to sum it up. I had him vaginally and have since learned that the first introduction a baby gets to the bacteria in our world is from the bacteria in the mother's vagina. Gross, disturbing, even frightening, I know. Apparently our babies digestive tracks are sterile until birth. Keep in mind that once they breathe that first breath they inhale bacteria and any other toxins in the air, like from perfumes, cleaning agents, second hand smoke on clothes, dander from animals etc. This is when they start building up the make-up for their gut flora. This is why it is so crucial that babies receive their mother's colostrum in those first few days of life. That golden liquid colostrum seals and protects the walls of the entire digestive track, creating a protective barrier against germs, bacteria and virus. Nature created and designed this special first milk to help prepare the baby and his / her body for everything that's about to enter it. Fortunately for Ben, he was able to get this first measure of protection and I'm so glad he did.

The beginning...my childhood

As with anything that's worth sharing, I'll start at the beginning so that I won't confuse you with too much jumping back and forth between events - even though I'm dying to jump to what's going on right now - knowing the history will make the present more clear.

The beginnings...I could try and go back for as many generations as I possibly could but I'll start with my mother's mother. My "nanna" had her first baby in a period of time where breastfeeding was little understood or encouraged. Although she did breastfeed my mother longer then she would her other children, she definitely didn't do it for the first year, probably not even for the first 6 months. If you're thinking I'm writing on the wrong blog, I'm not - The Very Breast Thing is just one small slice of this big pie I'm presenting you with, but it's a critical portion of the story. Although my mother was forced to eat liver and onions, Lima beans, fish and other foods as a child (which she will clearly voice that she "hates") she did not continue to eat a wide variety of meats, fruits and vegetables into her adult years, and definitely didn't force her children to either.

My own mother breastfed me for the first two months before she had to return to work, and then I was a formula fed baby. A few things to keep in mind, my mother clearly received more vaccines and antibiotics then her mother did, and I most definitely received more than my mother did. I was a pretty healthy, happy kid. I lived off all the "kid friendly foods" like peanut butter and jelly sandwiches, pizza, grilled cheese, hot dog, chicken fingers, and a plain turkey and bread sandwhich daily, as well as the typical chips, cookies, and sweets for years and years. The only vegetables I liked were potato (in the form of a french fry), ketchup (that counts as a tomato right?) canned carrots, and corn on the cob. That was it. And as much as I look at my diet and think of how unhealthy it was, most people probably think this is a normal and even a somewhat "healthy" diet for a child.

Thursday, June 2, 2011

A parent's worse fear come true

I think for most parents their worse fear is losing a child. I cannot even begin to imagine the agony and pain of watching your child suffer, knowing they are dying or the despair of having to go on living while your child has passed or trying to live with the sickening fear that at any moment your child might be taken away from you. For some it might be worse when your child has gone missing, has been kidnapped and could possibly still be alive, again maybe in pain. But what about when your child is suffering and in pain, but alive and in your arms? Instead of having your child kidnapped and ripped away, you watch their soul, what little of a personality you may have begun to know, slip away. You know you're losing them but you feel helpless because you don't know what to do and nobody seems to know how to help. You wonder if your child is possibly dying on the inside, lost in pain in a world where they cannot be reached, while you try to hold on to them. This is the kind of suffering I am familiar with and can relate to. I hope this blog might shed light for families struggling with a disorder that now effects around 1 in 110 children (though some new studies suggest the numbers are as high as 1 in 38). My first born son was diagnosed with Autism at age 2.5 on May 5, 2011.

There's one thing that might just be scarier than the rapidly growing rate of this Autism epedemic. I have learned one very frightening thing: NOBODY KNOWS SHIT about Autism. Okay, I take that back, but just a little. There is one group of doctors that know something, the doctor we see which is The Autism Doctor who not only knows his shit, but literally knows his patients' shit as well, and then there is one neurologist that I feel understands this disorder better than most. But for the most part, your general pediatrician, the "best in the state" neurologist, the pediatric gastroenterologist and even the leading autism research institutes don't seem to be on the same page or even open minded enough to discuss with other professionals and actually look at what causes Autism and how to treat it. But thank the dear Lord, there is one group of doctors that are getting together and TALKING and working towards a better understanding on how to diagnose and treat Autism. Unfortunately, these doctors aren't given respect, are cast out of the medical community (despite their board certifications in medicine and years of experience) and are considered frauds, charlatans and wackadoos. These men and women are actually helping the families affected by Autism and yet so many families who are affected by this disorder are told not to seek help from this group. I'm talking about the "DAN!" doctors (which stands for Defeat Autism Now) and my husband and I count our extremely lucky stars that we sought out a DAN! doctor (against our general pediatricians advice) and are so very honored to be able to work with Dr. Brian Udell.

Here's my little shout out to our favorite doctor: Dr. Udell is especially, uniquely qualified as he holds medical degrees in Pediatrics and Perinatal medicine & Neonatal medicine and has an impressive 35 years of experience. He offers the Autism community a wonderfully informative blog which covers the "hot topics" surrounding Autism at http://www.theautismdoctor.com/. He's extremely knowledgeable about all areas that affect Autism (from neurological to digestive disorders) and takes into account how the entire body is affected, including the skin, stool, urine, blood, allergies, everything - because guess what? Our entire body is ONE living organ that needs to be treated as a whole. He also offers patients a very personal relationship where he's not only available in person, on the phone, or through texts and emails, but even after hours! Imagine that, a doctor that is there for you when you need him, even if it's 10:30 at night! Oh and did I mention that he's a genius? He is. I've only met one other brain like him.

The second person I have to give some credit to is Dr. Natasha Campbell McBride. Dr. Udell has actually met neurologist Dr. Cambell-McBride, but I have not had this honor. In her book The Gut and Psychology Syndrome she adresses Autism (as well as many other auto-immune disorders, like ADD, ADHD, Dyslexia, Dyspraxia, Schizophrenia, OCD, etc) like no other book I've ever read. She too views this disorder as it affects the entire body and opens our eyes to what we are doing and how we are creating this Autism epidemic. Be prepared to have the way you view our world entirely changed...from the water in your tap, to the food we eat. Pregnant moms better research about their diet, painting nurseries, buying new furniture, putting in new floors, etc.

So what causes Autism? In a nutshell, a lot. Autism may be genetic as many families that have one child on the spectrum will have another child that might fall somewhere on the Autism Spectrum Disorder, but it doesn't end there. You have to also take into account that the sibling of the child with ASD probably shares the same gut flora, diet, vaccine schedule, usage of NSAIDS (Non Steroidal Anti Inflammatory Drugs: ex: Motrin, Advil, Ibuprofen) and Tylenol, as well as antibiotics and antibacterial products, and are exposed to similar toxic environmental factors such as pesticides and cleaning products and fluoride in water) etc as their sibling who is on the ASD. If someone told me this long list of reasons why children are affected by ASD I would have assumed that nobody knows yet what causes it and here's a long list of guesswork. Now, I see how in my own son's case, that all of these elements were combined in a such a way that it created what I call "The Perfect Autism Storm" to occur. Had my son only been given vaccines but consumed a healthy organic diet, avoided the foods he had digestive problems with, and I had never treated his colds with the abuse of antibiotics and fever reducing drugs, maybe, just maybe he would have been "typical." Then again, you never know. Maybe the 6 vaccines in one visit had something to do with the downfall of his immune system.

For some, the vaccines alone might be what caused their child's immune system to crash  which left them unable to handle common colds, which started the chain effect. Which ever thing causes Autism, isn't what's important. I say that because for every child it is different and that's why there is such a large spectrum. While one child regressed significantly after a round of vaccines, another might go off the walls when consuming dairy or red food dye. Which piece of straw broke the camel's back for one kid is different for another, but what they all have in common is what makes up their haystack. This is where I think the focus needs to be. Not on each individual ingredient that makes up Autism, but a recognition of EVERYTHING that's in the pot. I don't understand how these doctors are missing the fact that from what I've learned nearly every single child with Autism has a compromised immune system, every single one has food allergies / intolerances, every single one has had a history of chronic ear infections (many of which end up getting tubes in their ears in spite of the fact that they PASSED THE HEARING TESTS), too many of these children are given dose after dose after dose of antibiotics, hardly any were told to regularly take a therapeutic strength probiotic (most people don't even know what probiotics are, let alone the damage of antibiotics to our immune system and gut flora), most of these children were colicky as babies (which means they were suffering since birth and went undiagnosed) most had reflux, eczema, colitis, sometimes bloody or green tinged stools (which was their little body's way of saying my digestive track isn't handling what you're giving me to eat) and in most cases these kids were put on reflux meds and given lotions or ointments for their skin warnings, hardly any of the parents of these children were told to change their child's diet (specifically to remove dairy and wheat - many parents who actually inquire about diet are told that it won't help because it hasn't been scientifically proven) and most of these kids are delayed in speech (which is ignored for a while because the parents are told that kids develop at their own rate and to just wait) and by the time the child is over TWO years of age and still can't say his or her name (or worse stops responding to their name) will the child be evaluated for speech therapy (which many times don't do much to help if the child isn't able to absorb the therapy because they are too physically ill, dealing with abdominal pains and mental fog due to diet). How is it that ALL of these things are present in nearly ALL of our kids affected by ASD, but nobody can put it all together?

Why is it that each of these "ologists" point their finger and blame Autsim on something that isn't in their field and send you off to the next "ologist"? The Pediatrician dumps vaccines and antibiotics into the child. When they can't control the ear infections they send you off to the Ear Nose and Throat Specialist. The ENT doesn't look at the child's vaccine schedule or history of antibiotics. The ENT doesn't measure the child's IgA levels to determine whether or not their immune system is crashing. The ENT doesn't look at diet, reflux, digestive or stool issues but the ENT is super quick to puncture the ear drum with a foreign tube. When that doesn't solve anything, you're sent to the Neurologist who says the brain is damaged and it is our damaged genes which cause Autism and it is the Autism which causes gut problems, but the doctor isn't open to the idea that the gut problems are causing brain damage. You then go see the Gastroenterolgist who is suppose to specialize in gut knowledge, but argues that it's normal for a child to have constant mushy foul stools also known as "Toddlers Diarrhea" and doesn't seem to understand that what you put in your gut (food) will affect the digestive track and the digestive track is very interconnected with the brain. When you tell him that you believe diet might improve gut health and ask if it could help nuerological issues he shrugs and says they aren't related. He then shys away from that child once an Autism diagnosis is given. The last "ologist" you have left to see is the Dermatologist who treats the fungal rashes with medicated ointments and lotions without understanding that the rashes flared up after oral drugs (Reflux meds, antibiotics, NSAIDS, Tylenol etc) were given to the child. Why aren't all of these doctors working together and treating the child as a whole? This is why it is so important for parents to seek out a well qualified DAN! doctor who will take all of your child's physical issues into account. It makes me sick to think that this path might have been the only medical help we were offered had we not stepped outside this established cycle and found Dr. Udell.

To the parents of children suffering with ASD, even if your child hasn't been diagnosed yet, but you know something isn't right and nobody is addressing your root concerns, find the nearest, qualified DAN! doctor and have your child's health studied as a whole. Having a child diagnosed with Autism can be a parent's worse fear come true, but that diagnosis doesn't have to be a life sentence. There is help out there and your child can recover and heal. The SOONER you catch these problems and correct them the BETTER chance your child has in recovering faster. Just three months ago I watched as my son slipped away into the world of Autism, where he no longer would respond to his name, didn't recognize that he was holding a stranger's hand at the zoo and would gladly walk away with them (and did with me chasing behind) and had lost almost all speech, leaving me with a tantruming, spastic child. Once we got a hold over what was going on with Ben we first changed his diet and witnessed major withdrawals which led to an odd awakening in the dead of night where he just chattered jibberish for hours on end, litterally cupping my face and making eye contact trying to communicate with me for the first time. Our son was slowly coming out of this "Autism fog" and we refer to that odd night as his "awakening." He continues to progress since that day. His tantrums and meltdowns continue to improve, he has recovered the speech he's lost and gained many new words, recently he started putting two words together.  Best yet, we're getting to know our child. He shows affection now. He comprehends! The comprehension alone is a night and day difference to experience. This blog will chronicle our experience with Ben starting before his birth to present day and I hope our experience will pave the way for other families. We need to work together to take better care of these kids. Your children are counting on you. Remember, nobody can and is going to take better care of your children then you!

I sincerely wish your family all the very best health and may my experience help you take better care of your loved ones.