The 3rd Annual Biomedical Interventions for Autism Conference will be held in Indianapolis, IN on Saturday, April 9th. Sheila Edwards is the Event Organizer, and I asked her to write a guest blog about the conference and her son’s story. She agreed and provided links to some stories from her own blog (definitely check them out!).
So many autism, PANDAS and austism/PANDAS families have found help with biomedical interventions, I feel this is a relevant conference for many of us. This year, Dr. Phillip DeMio will be presenting on PANDAS interventions. I was planning to go to the conference since it’s not too far from where I live in Lexington, KY, but we will be going to Chicago the following week for PANDAS treatment, and I’m writing this from our spring break trip in Clearwater Beach. Too much concentrated traveling. But I’m happy to report that PANDAS/PANS Advocacy & Support will be in attendance to help answer questions about PANDAS/PANS.
If you decide to attend this VERY AFFORDABLE conference (prices start at only $30!), you can click here for registration. Read my interview with Sheila below for more information about the event:
Could you tell us a little bit about your story? Your son has ASD and PANDAS. Was it difficult to get either or both of the diagnoses, and at what age was he diagnosed?
Sheila: My son Hayden was diagnosed with ASD at age 4. I had a feeling something was not quite right from the time he was born, but I didn’t become aware that it was autism until he was almost 3. This was after repeated questions of my pediatrician, and her insistence that he was “just a boy” and would “grow out of it”. I made an appointment for his diagnosis, but I was told that I had to wait until he was 4 before they would even test him. This was extremely frustrating to me, as I needed the diagnosis to begin any form of treatment.
Last fall, my son’s new doctor suggested that she believes my son has PANDAS as well, and has begun treating accordingly. I’m frustrated with myself for waiting so long to run his titers (he is almost 10); I had heard of PANDAS, but didn’t think it applied to my son. But I also don’t think I was ready yet in my journey to investigate this piece of information. I’m grateful that he’s responding so well to these new treatments, and I’m hopeful that he will continue to improve.
Are there any particular biomedical interventions that have been most helpful for your son? And how is he doing currently?
Sheila: While I waited for the diagnosis, I went to the Internet to research what I could do at home. I attended support groups, read blogs, and learned about sensory diets and the GFCF diet. The first biomedical intervention I tried was removing dairy from his diet. Within two weeks he had more words, was less ‘zoned out’, and was more aware of his environment. My dad explains his observations of the diet here.
Shortly thereafter, we began to see a MAPS doctor and a Registered Dietitian. We added interventions slowly and saw progress all along the way. Some things that really helped Hayden (besides ABA therapy at Cornerstone Autism Center, speech and OT) were zinc, magnesium, carnosine, omegas, and treating for yeast. I have found that getting his genetics testing done through 23 and Me was extremely beneficial. My biggest advice to anyone reading this, is to research, research, research. What worked well for one child may or may not work for yours. It’s important to learn as much as you can, and work with your medical practitioners, to develop a custom plan for your child.
Biomedical treatment is also all about layering. One intervention may not show results, but layered in with other treatments, progress will start to occur. As many other kids with autism, Hayden has regressions and then we add an intervention, and sometimes it’s the right layer and we see big gains. But for the past two years he had somewhat plateaued in his progress. We were also having trouble getting him the supports he needed in public school, so we were seeing a lot of aggression, anger, sadness, and self-esteem issues related to attending school. We decided to add a new doctor in Chicago who ran titers; adding antibiotics and the Vitamin A protocol have really helped him to become more focused, have less scripting, less anxiety and aggression, and more interaction with us socially.
Hayden has come so far. At the time of his diagnosis he was semi-verbal, had constant meltdowns, didn’t recognize the faces of close family members, and was always sick. He has been through a lot as a result of his disability. My (then-nonverbal) boy was left alone on the public school bus for two hours in the winter cold (read about it on my blog here). He’s been put in holds and transported to seclusion in public school on multiple occasions, without notice to us. (We learned of it through him.) He was one of many moved from his home school to a room for kids with severe behavior issues, rather than typical peers. He was denied services because I didn’t know my rights as a parent of a special needs child.
Today, almost 6 years after his diagnosis, people who meet him for the first time are surprised to learn that he has autism. He still struggles socially and emotionally, and has flares, but we are on the road to recovery. He recently started attending a social skills group for kids with autism, and this is helping him develop advocacy and coping skills. Three months ago my (now fully verbal) kid performed a main role in the Christmas play, and he ROCKED it. He stood on stage in front of hundreds of people and spoke his lines with enthusiasm. He made the audience laugh with his clever tone of voice. He made zero mistakes and tolerated his scratchy costume. He also was finally changed to a full-time mainstream classroom that week (though still with an aide). And when I got remarried last September, Hayden was able to walk me down the aisle. Probably the best moment of my life so far. So, so proud of how far he has come.
Hayden’s Autism Treatment Evaluation Checklist/ATEC was at 108 when I started and it’s now at 25, but I’m not stopping until it’s under 10! My goal is recovery.
I’ve had mothers tell me that autism alone is difficult, but when PANDAS shows up that it’s a whole different ballgame.
Sheila: Hayden often has flares where he seems to be upset for no obvious reason. Sometimes he’ll go for months with no aggressive behaviors, then he’ll have a day where he’s raging and destroying his environment; then it dies back down again for months. It’s heart wrenching as a parent, to see your child go through this. I’m hoping to learn more about PANDAS and see if we can minimize these situations in order to help him better succeed in school.
(Note from Sarah: With PANDAS, it can be difficult to pinpoint what caused symptoms to flare. It could be an asymptomatic infection OR just an exposure to somebody with an illness that triggers the immune system and triggers the PANDAS symptoms. Testing for strep or mycoplasma pneumonia/walking pneumonia or any other illnesses you suspect your child has been around can help you figure it out.)
What are some coping strategies your family uses to handle the stress and challenges of these medical conditions?
Sheila: The first thing I did was start a blog. It allowed me to process my feelings, and led to an urge to educate others– that autism is treatable; that autism is a journey, and a crazy one at that. I’ve taken a break from the blog for a while, to focus on healing myself. But writing is a huge outlet for me. I also allow myself to take breaks from the research and hard work, and push our family to spend time together having fun. I vent to the right people (the other autism and PANDAS parents who get it). I spend a lot of time online reading, learning new things, and sharing the experiences of other moms like me. I have been working on taking better care of myself, and spending time on hobbies I enjoy. My husband and I also try to ensure that each of our kids gets time to focus on hobbies they enjoy, and that life isn’t just about medicines, doctor appointments, and therapies.
(Note from Sarah: Blogs ARE very cathartic. I’ve also had to take time away from my PANDAS Sucks blog to focus on immediate issues or family emergencies. I’m healing myself too [from Lyme and the PANDAS PTSD], so I totally get what Sheila is saying here about taking care of herself. Yes! I’m actually editing this blog while Jesse and I are at the beach for spring break. Life has to be more than PANDAS, even during a PANDAS flare/exacerbation. You gotta take care of YOU!…so you can take care of your child!)
This is the third year for the Biomedical Interventions for Autism Conference? Can you give some background on the conference? What is your role?
Sheila: This conference began as an idea among several local practitioners, Registered Dietitian–Staci Small, Dr. Mary Lou Hulseman, and Dr. Jerry Kartzinel, and our center co-owner–Debbie Ide. It helps to bring a learning opportunity to local families at an affordable cost. The conference has grown to include various practitioners from nearby states, and vendors sharing resources and products that are geared toward families seeking healthier lifestyles. My role as the event organizer means that I am the one that makes it all happen! There are a lot of little details to work out to bring it all together in the end, while trying to accomplish my other job tasks at the same time. This is our third year so it does get easier, but managing the schedules, registration site, flyer content, conference packets, vendors, volunteers, speakers, and supplies can be overwhelming at times! I am fortunate to work at a center with so much great support, and so many of these tasks are not mine alone. We have a great marketing coordinator who creates all the flyers for the event. Our center manager helps with collecting all the supplies. As a team we work together to put on events, and each of us has our own part.
Who will be featured at the Biomedical Interventions for Autism Conference this year, and how do folks register to attend?
Sheila: Each year we’ve tried to bring in new speakers and focus on different topics. This year’s keynote speaker is Dr. Phillip DeMio, who will present on PANDAS, Lyme and the Immune System. Dr. Phillip DeMio has focused his practice on patients with autism and immune conditions like PANDAS, and so we were excited when he agreed to come speak. This will be our first year with an Osteopath, Dr. Charlie Beck, presenting on how his practice helps those with Autism. We’re also excited to feature parent researcher Maria Janik speaking on the role that genetics can play in individualizing the supplement program of a child with autism. For those brand new to the idea of Biomedical Interventions for Autism, Dr. Mary Lou Hulseman will start out the day with an introductory talk, followed by Registered Dietitian Staci Small who will speak on helping picky eaters.
Modeled after the success of big conferences like Autism One, we are trying a Parent Panel this year. Last year’s feedback from attendees asked for more information on parent experience, how to get started, and how to make Biomed work on a budget. So we hope that by adding a panel of experienced parents telling their stories and sharing their ideas, attendees will feel supported and see that they’re not alone in this journey.
Similarly, last year’s attendees asked for more time to ask questions. Therefore this year instead of a Q&A, we are having two simultaneous Meet and Greets. In one room, attendees will have a chance to speak individually with any of the practitioners who presented. In a second room, they can speak with anyone on the parent panel. This more informal atmosphere should allow parents to ask more specific questions and have the time to get to know the people who they will put on their child’s care and support team for autism and PANDAS.
What advice would you give to a family that suspects their child is showing signs of autism and PANDAS/PANS?
Sheila: Go with your gut instinct. If you think something is not quite right with your child, and your doctor ignores your request for testing, get another opinion! There are so many good doctors out there. If you don’t feel that your doctor is a good fit for your child or isn’t listening, it’s best to find one that will. Look for an integrative, holistic, or biomedical practitioner who is familiar with PANDAS and/or autism. They will have better information for you, and will help you get the support you need for your child to improve.
What advice would you give to a family who has an autism diagnosis for their child, but has never heard of Biomedical Interventions?
Sheila: It doesn’t hurt to listen. Come to the conference, or attend an online webinar, or read some of the research. You may not find it helpful, and that’s ok. But what if you do? It can’t hurt to go hear what the practitioners and researchers have to say about the latest autism and PANDAS treatments. The worst thing that could happen is that you decide not to go forward with Biomedical Interventions. The best that could happen…. well, that’s limitless! Even small gains for our kids can mean big gains for improvement in their quality of life.
Can you please complete this sentence: “PANDAS Sucks because….”
Sheila: PANDAS Sucks because…mainstream doctors aren’t aware of PANDAS and PANS. This means you might be working with a doctor who is running all kinds of tests but “not finding anything wrong.” It can be exhausting and frustrating to know that there is something wrong with your child, but not know what that something is. Continue to research and advocate for your child, and put together a team of people who will work to help your child improve to be the best they can be.
You still have time register for the 3rd Annual cal Interventions for Autism Conference. Regular registration is only $30/single and $45/couple. (Late registration begins on 4/6/2016.)
Thanks so much to Sheila for sharing her story. It’s so interesting to read the journeys of PANDAS families and see the similarities. PANDAS Sucks exists to tell our collective story about PANDAS/PANS. We really are all connected, and our stories really are so similar even if they are different.
I wish Sheila continued success with Hayden, and clearly, he has made such great strides! It can take some time to find the correct PANDAS treatment protocol, but that should bring even more improvements with the combined with the current successful biomedical interventions. And definitely take Sheila’s advice “to go with your gut instinct” when it comes to your child’s health. YOU know your kid better than anybody else. YOU are the expert when it comes to your child, no matter what the doctors might think. Yes, the doctors can run tests, but they do not know the teeny tiny details…there’s no way they could.
As soon as I post this blog, I’m heading to the beach. Jesse wants to get back in the waves here at Clearwater Beach. Hope it’s sunny and warm wherever you are. Wishing you a baby blue, cloudless sky. <3
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.