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.