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.