Our climb… up the mountain of Autism…
So many families live with a child who has autism… or autistic symptoms. There are many blogs and references all over the web…. but this is a little slice of our journey in healing our daughter’s autistic symptoms. We wanted to put this information together because we meet so many people whose lives are also touched by autism…. and share our story. There is healing. There is hope. What we most want everyone to know…
We believe that many children with autistic symptoms don’t have “bad brains!” – They simply have sick stomachs and overworked livers and extremely overtaxed immune systems (even though many of them never appear sick!). These sick organs allow toxins to build up in the blood and make their perfectly healthy brains go haywire.
Quick Summary: After an incorrect diagnosis of ADHD/ODD and 9 months of HELL on various ADHD drugs and Zoloft, Caroline was diagnosed with Asperger’s Syndrome (which is on the Autism spectrum). She was struggling in first grade, making C’s and D’s, and her teacher had no idea how to reach her. She was moved to a different public school with a fantastic ASD (Autism Spectrum Disorder) specialty teacher and a full-time aid in the classroom. We started our biomedical treatment and diet changes at the same time…. Fast forward one year… she is repeating first grade for maturity reasons, but she is back in a regular classroom (100% of the time) without an aid (albeit she has one fantastic teacher!)… and she is thriving! She made the A honor roll this Fall — but even more important to us… she has friends and sleep-overs and plays and understands social situations like any other 1st grader. She still has difficult moments with her temper, but she’s learning to control that better, too. Her progress is nothing short of a miracle. A blessing of mental and physical health. And, more than anything, it gives us HOPE.
There are some more details in a blog post that I wrote several months ago…. Our sweet Caroline’s story.
Learn more about Autism.
There is a fabulous organization called Talk About Curing Autism (TACA). Their website has a wealth of information. Here is our favorite part:
Medical and behavioral treatments are available to individuals affected with autism. With early intervention (via both traditional therapies and medical intervention unique to the individual,) the future can be very bright for many affected with autism. However, we know very little about what causes autism and how to prevent it. Urgent medical research is required to help solve the mystery of autism and in finding the cure.
TACA believes in early diagnosis, intensive therapies and medical intervention for children affected by autism. With early intervention, medical treatment unique to each person’s needs, and necessary support services for families, many children can improve greatly and some can recover from their autistic symptoms. We believe the future is not defined for many children affected by autism. Hope and recovery is possible. Learn more from TACA about autism.
Many times when we talk about the changes in Caroline, people think that her “awakening” was a result of the changes we made in her diet. The diet is a very important part of her healing process, but there are a host of other pieces to the biomedical treatment of autistic symptoms.
Our Diet. You’ll hear the buzz words “Gluten Free” a lot. We are in fact, Gluten, Dairy, Soy (oh my goodness YES! we are soy free… soy puts our sweet girl into hyperactive over-drive!), Artifical Color, Artifical Flavor, Artifical Sweetener, MSG, High Fructose Corn Syrup, and Preservative FREE. So What do we eat? – We get that question a lot. The simple answer is – Meat, Veggies, and some fruits, too. We also eat eggs. We still eat out. Many restaurants now provide “allergy menus” and even offer to prepare our food separately to avoid cross-contamination. Believe it or not, the wheat, dairy, and artificial stuff isn’t usually a problem for them to leave off — it’s the soy! Soy is in everything! Salad dressings, marinades, sauces, bacon, ham, hotdogs, even vitamins! Read some labels and you’ll be shocked where it turns up. Nowadays, most restaurants also fry corn chips, chicken fingers and fries with soybean oil. Just one more reason we ”evolved” into a paleo diet. We also have to avoid foods high in glutamates – MSG, soy, seaweed, peas, tomatoes, mushrooms, and parmesan cheese. If Caroline eats these foods, she gets hyperactive and very impulsive. Glutamate sensitivity is actually fairly common – many of us complain of headaches after eating MSG, for example.
Epsom Salt Baths. Almost every night, Caroline soaks in an epsom salt bath. Some nights we skip the bath (it is also VERY IMPORTANT for her to get 10 hours of sleep a night) and we apply an epsom salt cream — many thanks to Terry Wingo of Madison Drugs for formulating the cream just for us! Most children on the Autism Spectrum need magnesium and have low blood sulfate — sometimes their levels are only 20% of normal. We need magnesium and sulfate to help remove toxins from our bodies. If not removed, the toxins adversly affect the neurotransmitters in our brain…. and boy, does it show in Caroline – she gets irritable, VERY impulsive, and uncooperative. If she accidentally eats something with vanilla or red food coloring, the effect is immediate! Remember her earlier diagnosis of ODD (Oppositional Defiance Disorder)? Witness one of her ‘full-on’ rages, and it’s impossible to imagine the cure is a 30 min soak in Grandma’s ‘foot salts’ – but that’s exactly what works!
Anti-yeast treatments. So how do their stomachs get “sick” in the first place, and why don’t these kids tell us they have sore stomachs? For some of them, it’s all they have ever known. It likely starts when they get ear infections and we treat them with amoxicillin and augmentin. We didn’t know at the time, but we should have given her probiotics with the medicine. The antibiotics kill off loads of beneficial bacteria from the gut. The healthy bacteria help digest some of our foods and convert some vitamins into active forms for us. Most importantly, they form a shield for our body against the disease-causing bacteria, viruses and molds. Molds (yeast) are everywhere. One of the most common is Candida Albicans. It causes athlete’s foot. It also loves to set up shop in our intestines whenever our good bacteria are killed off with antibiotics. Its favorite food is sugar. This is why we we eliminated breads, rice, corn, and fruit juices from her diet.
The yeast eat all that sugar and produce toxic byproducts that kill other healthy bacteria in the gut, and the toxins pass into the bloodstream where (you guessed it) they travel straight to the brain and liver. Yeast and its metabolites are completely foreign to our brains and immune systems and they cause all sorts of odd reactions and behaviors. Caroline had a brain fog and would wiggle and throw her legs into the air and laugh and smile inappropriately. She would also act silly and drunk when the yeast got the best of her.
When our DAN! Doctor prescribed oral nystatin to kill Caroline’s internal yeast infection, the results were amazing! Within 4 days, it was like she came out of a fog. We never knew she was in a fog, but the effect for her was like cutting through an overgrown hedge of thorny vines and bushes to get to the sunshine on the other side. It was our “Helen Keller at the water pump” moment. I swear her eyes even brightened up! She immediately was able to put concepts together that she couldn’t before. It was a new starting point. She was still behind academically and physically, but she really started taking flight at that point.
Antibotics for the STREPT virus (PANDAS) Caroline, has a very peculiar immune reaction to strept. When she encounters strept, her immune system inflames a very specific region of her brain that results in anxiety and OCD behavior. Dr. Susan Swedo, of the National Mental Institute of Heath (NMIH), discovered this reaction in the late 1980s and named it PANDAS – Pediatric Acquired Neuro-Dysfunction Associated with Streptococcus. Our pediatrician was able to measure her immune response with a strept-specific blood test. Until he saw the level of her response on paper for himself (6 times greater than normal), he didn’t exactly believe in PANDAS. I think he is a believer, now.
Whenever Caroline is exposed to strept, the first reaction we usually notice is wetting of her pants (2x or more over 2-3 days), soon followed by an obsession with one topic that she just can’t let go of. She gets a little more anxious than normal, and sometimes a little more energetic. It’s the sudden onset of OCD that is really the hallmark of this condition. For her, it lasts for 3-7 days, and starts to wane on its own, but we give antibiotics (followed by daily probiotics, now) to clear the strept faster. Strept is most often transmitted during the first 3 weeks of a school year. This past August, Caroline was taking a 30-day dose of antibiotics to clear strept, so that prevented her from getting a new infection from a classmate.
Supplements. We have also seen improvements (and some setbacks too) from giving Caroline supplements. It is a delicate balance that Jamie manages with help from Terry Wingo and Dr. Kalb. Because of yeast, and/or bacterial imbalances, or other digestion problems, many kids with autism do not absorb all the vitamins and nutrients they need from their diet. We supplement Caroline’s diet with several vitamins, amino acids, and minerals to ensure she gets what she needs.
- Dr. Daniel Kalb, MD (Board-Certified Family Practitioner) 4091 Mallory Lane, Suite 118, Cool Springs, TN 1-615-791-9784 www.csfm.net Patients drive from Birmingham to see this doctor!
- Terry Wingo, Madison Drugs, 8 Parade St.(Providence) 256-837-1778. Terry is an amazing source of health information. He has every specialty supplement or medicine you will ever need, plus organic eggs, coffee, botanicals, almond flour, massages, and yoga. Make an appointment now for you and your child.
- Denise McNichol, Huntsville Hospital Outpatient Pediatric Occupational Therapy, 256-265-7952. Denise has a 6th sense with special kids. She’s an incredible OT and mom!
Books and Websites.
There are a million references out there. So much information…. here is a list of books and websites that we have found helpful in our journey. Click here to go to books and websites we like.
Our best to you and your family. If we can be of any assistance to you please do not hesitate to call or e-mail us!