Have you ever heard the term “brain allergies”? I hadn’t, and I am sure most of you haven’t either. This was the diagnosis given to me by a world-renowned DAN doctor here in Portland, Oregon. He had been treating my 3-year-old son for autism over the last 10 months with no success. He said, “I have only two other clients with this same disorder and in all of the thousands of patients I have ever treated, only 1% has this condition.” “Your son is not autistic,” he continued. “He has brain allergies.” OK. Let me backtrack a little here and tell you about my son, Tristan. This is something I rarely talk about because even in the autistic community, it seems a little mind-blowing.
Tristan cried for the entire first 6 months of his life. He rarely slept and when I tried to lay him next to me in bed to sleep, he gagged. It was a horrible sound. My husband and I had to place him to sleep in his car seat for fear that he would gag himself to death. He never slept and I never slept. I wondered why he never wanted to be held or to be close to me? I thought to myself many times:” Isn’t he supposed to want to be as close as possible to his mother? Why do I feel this disconnect from him?”
Tristan seemed to be “sensitive” to everything, even to my breast milk. They put me on a restricted diet of no diary which didn’t seem to help, so he was put on a hypoallergenic milk formula which he couldn’t tolerate either. There was no milk formula he could drink without breaking out in eczema, gagging or vomiting, so we put him on a soy formula which seemed to work for a little while. When it was time to introduce solid food, everything gave him diarrhea and a severe rash around his anus. He could only eat about 5 foods back then, which we had to continually rotate. Tristan was miserable; all he did was cry. I noticed in particular that his behavior and mood would always get worse AFTER eating. I went from pediatrician to pediatrician seeking help for my son’s chronic diarrhea and food issues. Everyone said he was fine and that he would grow out of “it.” Whatever “it” was. By now, I was getting fed up and really concerned. I did a little research and took Tristan to see a Naturopath. She put my son on a food sensitivity rotation diet and suggested I stop vaccinating, stating that my son’s immune system could not handle the assault. I was willing to try anything at this point. She was the only person who had offered any type of help for my son. So at six months, I stopped vaccinating.
Tristan seemed to be getting a little better and was hitting typical milestones, but always seemed just slightly behind. At around 14 months, he started to lose the few words he did have which was replaced by this strange “Eeeeeeee” sound. He didn’t seem to be playing with his toys the right way, and would often just spin the wheels on his trucks and watch them turn. His moods were getting worse and he had constant tantrums. Then at15 months rather suddenly, he was GONE. The few times he did let me hold him, he would look off into the distance – no eye contact at all. It almost seemed like the more I fed him, the worse he got. How can this be? Food seemed to be his worst enemy. When he was sick and hardly ate, he seemed better? Almost normal! I jumped on-line and found a new pediatrician. Maybe he could help? I told him “something happens when my son eats.” He handed me a questionnaire on autism and referred me to an autism specialist. At 20 months, Tristan was diagnosed with autism. We were told that there was no cure. Tristan would never speak and that one day he would probably need to be institutionalized. He gave us no hope. The most profound sadness came over my life that day, but I was also determined not to let my son go.
First stop: Biomedical.
We went to the “best” and only DAN MD here in Oregon and proceeded to spend thousands of dollars on supplements, antifungals, antibiotics, lab tests, more supplements and diet after diet after diet. Nothing worked. Tristan was sensitive to ALL foods except butternut squash and meat. He was sensitive to food dyes, preservatives, environmental toxins, even to the air on some days. He would be fine and then suddenly tearing down pictures, ripping books, kicking, screaming, punching, falling over and laughing. Yes, laughing! The most maniacal, drunken laugh I had ever heard. It was like my 3 year old was a giddy drunk one minute, a mean drunk the next and a speed addict the next. It was terrifying. There were some days when my husband and I were truly scared of our own child. He was like the Tasmanian Devil from the Bugs Bunny cartoons, spinning through our house and destroying everything in it. At one point I thought he was psychotic or schizophrenic. I even thought momentarily that he might be possessed by some evil demon. I had to hold him to keep him from attacking me and his eyes shot me a look with such hatred; I will never forget that day. I sat on the floor afterwards and sobbed because my son felt NOTHING. He laughed when he hurt you and smiled when you cried. Maybe he was a sociopath? This was beyond anything I thought autism could be. We lived like this for two years. Prisoners in our home and slaves to our life. These were dark days, the darkest I had ever known. “How can this be Dr. D.A.N.?” “How can my son only be autistic if he eats the wrong food?”
This is when I got THE diagnosis. “You’re son is not autistic, he has brain allergies. It is a condition where food and other environmental toxins cause severe or strange reactions in the brain. Dr. Doris Rapp is an expert on this, and if you go to her website you will see videos of children having similar reactions like Tristan. You should read her book Is This Your Child? I think it will be helpful to you.” I don’t know, but if it looks like autism, sounds like autism, acts like autism, it’s autism. I bought the book, read it and went to her website. When I saw the videos of children who seemed completely normal one moment and then were given a food or substance that they were “allergic” to, I witnessed the dramatic change that took place. I knew this was what my son had. The problem was, how do I fix it? In the book, she describes her treatment: Provocation Neutralization in which she administers a small dilution of the substance a person is allergic to and then neutralizes the response with the same substance in either a smaller or higher dilution. The trick is finding the right dilution which could take hours. This puts the child or adult through horrible reactions. I am talking about needing three adults to hold down a small child who is foaming at the mouth like a rabid dog, kind of reaction.
Next stop: Provocation Neutralization.
We tried months of this incredibly difficult process with Tristan and once again, what seemed to get better for a day or two only got worse the following days. My husband and I felt shattered and defeated. I even had a phone consult with Dr. Doris Rapp and told her Tristan’s story, begging for her help. She said “First, I want you to know that you are not crazy. It sounds like your son does have this type of allergy and there is no medicine or behavioral modification that will help. I know that Provocation Neutralization could help him, but I am retired and most doctors who do it do not do it the correct way.” “Well what can I do? How can I help my son?” I was crying. She said “The only other thing that I have seen that has helped some of these kids is Homeopathy.” Homeopathy? I had heard the word but had no idea what it meant.
Last stop: Homeopathy.
We have been doing CEASE therapy now for nearly two years and my son has lost his autism diagnosis, all of his food sensitivities except for two, and is nearly completely recovered. He is 5 ½ years old and will be attending an arts-focused elementary school this September for Kindergarten. He is a sweet, charming, artistic, funny, happy, friendly and exuberant little boy. He has so many friends and is loved by everyone. EVERYONE loves Tristan and Tristan loves people. I know I am biased, but my son is truly special. He is a bright light wherever he goes, but his brightest light, he gives to me. We lie in bed every night after reading a book, and cuddle and talk and laugh. He can look me in the eye now and say “Mommy, I love you so much.” I hear these words so clearly, not because he is able to talk, but because I had lost my child and was able to bring him back.
Tristan Today
So I ask you, any of you: Is this your child?
Brooklyn Girl is mother to her one and only 5-year-old son, Tristan. Originally from NYC, she now lives in artsy, rainy Portland, Oregon. She loves listening to loud music in her car, Starbucks (drive through!), photography, music and art and encourages these things in her son. She hopes to help and inspire other families with children on the spectrum to believe that recovery is possible.
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What an amazing and inspirational story, I’m so glad you shared it. I would love it if you would please email me the contact info of the cease therapist as I’m unable to locate one in Oregon. Thanks!
There are no CEASE therapists in Oregon . But I can recommend Lora Roberts 🙂 you can do appointments via Skype. 🙂
First, let me say how wonderful it is to hear that your son is doing well. Second, Wow..feels like I am reading my daughters story. We have just had to stop provocation/neutralization for the second time because of complications…awesome starts only to be let down after a week have become a way of life my family for the last three years. I am also from Brooklyn..:). My birthday is tomorrow…my birthday wish right now would be to be able to have an email conversation with you about the CEASE method….if your willing to fulfill my wish, my email is [email protected]….
Thank you sharing your story and making me feel a little less alone in this battle
I sent you my email address.
I would love to know which CEASE/Dan doctor you worked with. We also moved to Portland from nyc 9 yrs ago.
Thanks!
As I was reading your blog, all along I was thinking, “She needs to do homeopathy and CEASE Therapy.” Glad you did. I am a homeopath and a CEASE Therapist and it is amazing. Everytime I get a report of a child smiling for a photo or answering a question appropriately, it warms my heart with gratitude for Dr. Smits, who developed the therapy.
Thank you Kathyrn! I am forever grateful to Dr. Smits too 🙂
Thank you for telling your story. I am hoping for healing for my daughter as well using homeopathy and CEASE therapy. God bless 🙂
Good luck to you and your daughter, Cara. There is no doubt in my mind that she will recover with Homoepathy and CEASE 🙂
I also contacted Dr. Rapp in desperation almost a decade ago, and she was kind to respond. For us, a BIG key was Jordan’s gut. When he had a really clean diet(no gluten, soy, sugar, etc) AND we rotated foods so he wasn’t eating the same things day in and day out AND added lots of probiotic-containing foods and drinks(homemade yogurt, kombuha, etc), he was at his best. But it’s not easy! 🙂 However, doing that is what helped him to stop reacting so severely (behaviorally) to foods.
Interestingly, having certain gut bugs such as candida and h. pylori also caused crazy behavioral reactions. It was like there was an umbillical cord from gut to brain…I would have NEVER believed it had I not seen it with my own eyes. It was very much like living with Jeckyll & Hyde.
Unfortunately even now, he will dive into periods of dark negativity and we are not always sure why. Often it is preceded by a viral infection, but not always. Sigh.
So things are much better, but I still have a VERY strong-willed child and I still feel there is something we are missing. I am grateful for the recovery we have made- he would no longer be considered ASD- but I feel sure that there is a very key underlying issue we have NOT addressed that causes the mood swings.
Carrie, you may want to read the book “Brain Allergies” by William H. Philpott, MD. He addresses that many mental disorders such as Depression, Bipolar Disorder, Schizophrenia, etc. are linked to gut/enzyme imbalances. To be honest, I found the book to be a little overwhelming but informative and interesting. I did all the same diets and protocols you mentioned above but I felt like I was a slave to my kitchen and I was exhausted all the time. My son is also strong willed but he is so much more cooperative and easy going now; there is absolutely no comparison. You might want to give homeopathy a try, what have you got to loose? 🙂
Thanks, yes, I actually owned the book and read it at least twice. It too felt like only a partial, incomplete answer. I wish I had someone I trust who has benefitted from homeopathy that I could sit down with…it’s hard for me to wrap my head around how it could work and I guess I worry that what I could lose is…a lot of money! LOL Do you have any links to well-conducted researh showing efficacy? I am great with evidence and numbers, they comfort me:)
Hi Brookyn girl,
It is so amazing to read your story I have been struggling with my daughter who just turn 7 two wks ago. She has been seen a DAN doctor since was 2.5yrs old, done all the therapies you can think of Speech, OT, Hyppotherapy, ABA. GFCF diet taking so many supplements, antifungal, antiviral meds, allergy drops. You name it. I was wondering if you could share with me who is the Dr your son sees and any information that would be helpful. I am also from NY living here now for 10 yrs. My email address is [email protected] looking foward to hearing from you. Thank you God bless you and be well, hugs for your sweet boy.
Brooklyn Girl- Thank you Thank you Thank you! I have a little Tristan…her name is Lady A…. and I could have written most of this post because our experiences mimic yours almost identically…
we have done major diet modifications and worked on restoring her gut… one of the early books I read was Dr. Rapp’s.
I also had watched this old Donahu episode she was featured on:
http://www.youtube.com/watch?v=50LSHIphccQ
We have gone from a screaming colicky miserable baby and toddler to a sweet loving little gal…we still have our hiccups and bumps in the road… but we are working through them and a mitochondrial disease diagnostic journey…
more of our story here…
http://babyfoodsteps.wordpress.com/about/our-story/
Wow! I just read your blog and you are right – your daughter’s history is just like my son’s! Thank you for posting the Phil Donahue show. Dr. Rapp was kind enough to send it to me on DVD and I was blown away. At that point there was no doubt in my mind that was what was wrong with my son. I wish your daughter all healing and full recovery 🙂
Brooklyn Girl… is there a way I can contact you ? I have a few questions… since you are much further down this road than I am…
facebook? mine is https://www.facebook.com/babyfoodsteps
email? mine is babyfoodsteps at gmail dot com
Tristan is one of my favorite students. I love his hugs and his excitement about life. He is one of my most favorite students at school. Love you guys.
Kelly
Thank you Kelly! Tristan is sending an extra big hug to you 🙂
So beautiful! So difficult! So rewarding! Big hugs and hoorays to you both.
With much love and respect,
your old friend jackie.
Thank you Jackie! xo
You did a nice job with Tristan. I have been following Dr. Rapp’s work since the 80’s. I mention her in my upcoming book. As I see it, nearly all autism is Vaccineism. Toxic reactions to the aluminum, thimerosal, embalming fluids, polysorbates ethers, dyes, dog and infant tissues, among others shot into our kids and now 1 in 6 have developmental disabilities. I have seen quite a few Tristan’s in my 1 to 1 sessions. I am not a doctor but I can say that it appears that the sicker, more aggressive and enraged they are when little, somehow the more gentle and loving they can become when the right steps are taken. Way to go!
Thank you Shell! What is your book called? I would love to read it.
Here is my book on recovery.
http://www.amazon.com/Recovering-Autism-ADHD-Special-Needs/dp/0988853108/ref=sr_1_1?s=books&ie=UTF8&qid=1399744027&sr=1-1&keywords=Recovering+Autism%2C+ADHD%2C+%26+Special+Needs
Wow, I am crying with joy for you!! We just started Homeopathy and I have seen great results after just one month. This gives me great hope!! Thank you and congratulations!!!
Thank you Melissa! I wish you great success with your child and homeopathy 🙂
Thank you so much for posting your story!!! My son has very similar reactions as yours. He was diagnosed at 22 months with severe autism. I hopped on a plane from California to Boston for my first DAN conference 2 weeks after the diagnosis. We started the DAN protocol about 2 months after that. My son is now 9 and after 3 DAN doctors countless GI docs and Neurologists nothing has changed. You have given me new hope and I am going to start researching right now.
Thank you so much!
Wendi – you are so very welcome. The whole point of me writing this story was to help other families who were feeling hopeless. I certainly did. Good luck to you and I wish your child full recovery!
Hi, I am so happy to hear that you have your son back. My son is exactly like yours. I have done classical homeopathy but we haven’t reached the end of the tunnel. Can you please email me the contact info of the cease therapist? Thanks
Could u email me the name of the cease therapy practitioner you used? Thank u!