fbpx
Alexis Shares Her Experience with PANS/PANDAS

Alexis Shares Her Experience with PANS/PANDAS

My little Squishy was diagnosed with ASD May of 2017.  There were speech and communication delays as well as some social deficits.  He was an easy-going dude whose main frustrations stemmed from his lack of ability to communicate.  We started some dietary interventions, began a few supplements as well as Andy Cutler Chelation and seemed to be in our groove.  He was making progress and I was feeling confident we were headed down the right path.

First Signs of Trouble

Around Thanksgiving the same year, Squishy boy acquired a vocal stim (he’d make a “yeeeeeeee” sound).  In addition, this was often accompanied by some strange hand contortions and gritting his teeth together.  I just assumed this was the metals moving out of his body and continued on with supplementation and ACC. In addition, he seemed to have a constant cold the month of December, but that was not unusual for small kids in germy preschool.

By January 2018, Squishy developed severe separation anxiety and began chewing his nails nervously. He started waking up in the middle of the night, for hours at a time. He spent a lot of it jumping off the foot of his bed repeatedly.  In the evenings after school, he’d run around the house, seemingly in pain yelling “Oh no! Oh no!” and would bang his head on the floor. The language that he had seemed to diminish, except for “Oh no!”  

My mellow dude went into raging tantrums at the tip of a hat.  He’d throw himself on the ground and writhe around while screaming. Each tantrum episode would last over 10 minutes and it was very challenging to calm him down.  

In addition, he started having massive stools…bigger than anything I’ve ever seen from a child. I’d have to double or triple diaper before bed because he’d have massive BMs in the middle of the night that destroyed his jammies if I didn’t.

My mom brought to my attention how large Squishy’s pupils seemed. They seemed to be extremely huge, regardless of the lighting of his environment.  

Could it be PANS/PANDAS?

The more I researched, the more I realized that all of the symptoms that Squishy had pointed at PANS/PANDAS.  I’d heard of PANS/PANDAS before, but brushed it off because Squishy didn’t have classic tics or OCD.  In my mind, the tics needed to look like the facial tics associated with Tourette’s and OCD had to look like habitual hand washing or something similar. It wasn’t that he didn’t have the tics and OCD behaviors. I just wasn’t clear on what I should be looking for at the time.

We took a trip to our pediatrician and I asked for a rapid strep test and peri-anal culture for Squishy. The nurses reminded me that he didn’t have a fever or any other strep symptoms, so a rapid test was unlikely to give us any info.  They couldn’t have been more wrong. The nurse stopped in the room to deliver the news – the rapid strep test was positive and they’d be writing a prescription for an antibiotic.

I assumed the tics needed to look like the facial tics associated with Tourette’s. I thought OCD had to look like habitual hand washing or something similar. It wasn’t that he didn’t have the tics and OCD behaviors. I just wasn’t clear on what I should be looking for at the time.

 

Progress and Persistence

After the 10 days on the antibiotic, Squishy made exponential progress. However, he didn’t seem to be back to himself quite yet. I called our local Children’s Hospital to make an appointment with the provider known in our city for treating PANDAS. They said they could get us in in about a year, but asked if I wanted to go on a cancellation list.  I was absolutely shocked and enraged that they expected desperate parents with sick children to wait a year to be seen.

Instead, we made an appointment with a MAPS doctor. I asked for him to do another round of antibiotics to try to get my kiddo back to baseline and he agreed.  

Despite this initial progress, my mother’s intuition was telling me something else was up. I asked the doc to run a viral panel and that’s when we found HHV6 and mycoplasma. His HHV6 antibodies  were sky high which meant he was fighting an active virus.

Who knows how long Squishy had been fighting this virus, but combined with the strep that was lurking untreated, he didn’t have a chance.  The combination of the two caused inflammation in his body and all of the symptoms were red flags that something dire was going on.

Ongoing Treatment, Feeling Better

We never obtained a clinical diagnosis for PANS/PANDAS.  I felt that due to the lack of protocol in the standard of care for PANS/PANDAS, the label didn’t matter to me. 

I knew his symptoms and behaviors mirrored PANS/PANDAS, so in my mind, I could pin the recent changes we saw in him on this disorder. The medical providers on our team agreed.  

We’ve been working with Squishy’s doctor to treat the HHV6 for almost 10 months.  Through the use of a prescription antiviral, his HHV6 antibodies are finally within the normal range.  His pupils have returned to normal size and his language is returning. His sleep is back to normal. He’s making great progress at preschool and excelling in ABA therapy. I’m confident that our current treatment plan is working and we’re headed in the right direction.  

 

Sharing My Knowledge With You

Here are a few things I’ve learned along the way that might help other parents navigate the world of PANS/PANDAS.  

1) Recognize symptoms

The list of symptoms for PANS/PANDAS is large and quite diverse.  Even if your child only has a few of the symptoms listed, or if you’re not sure if a new behavior or symptom qualifies,  it still might be worth investigating.

Click here to see the PANS and PANDAS symptoms.

 

2) Find A Provider Who Can Help

Unfortunately, there are few medical providers out there who are well-versed in the diagnosis and treatment of PANS/PANDAS.  A MAPS doctor may be a reasonable person to approach, as many have at least heard of the condition and may have some training on treatment options. To find a MAPS provider, search your area here.

Click here for a list of providers listed by the PANDAS Network.

An immunologist may also be a resource to consider.  Since PANS/PANDAS is considered an autoimmune or autoinflammatory disease, immunologists may be able to offer some testing options and treatment guidance.  Make sure to ask of the provider treats PANS/PANDAS before booking your appointment.

Some parents found a pediatric neurologist to be helpful.  

3) Consider Getting A Clinical Diagnosis

Getting a PANS/PANDAS diagnosis can be a challenging process.  It’s a clinical diagnosis which means that the provider may do some blood tests in conjunction with reviewing the child’s medical history and symptoms to determine if a PANS/PANDAS diagnosis would apply.  Some of the tests you may be asked to do include a viral panel, strep antibodies, or the Cunningham Panel. To see a more detailed list of tests, click here.

PANS Diagnostic Guidelines

PANDAS is typically associated with strep. Click here to see the PANDAS Diagnostic Guidelines

Please note that even if a child receives a diagnosis of PANS/ PANDAS, it doesn’t mean that treatment will be easier or more accessible. The number of medical professionals who are still on the fence as to PANS/PANDAS being a legitimate condition is large and this can hinder treatment. This is when being a strong, educated advocate becomes most critical.

 

4) Learn About Treatment Options

Currently, there isn’t a current standard of care for PANS/PANDAS kids. Some kids may be treated with daily anti-inflammatories like ibuprofen or steroids, and others may receive long-term antibiotics. Some kids improve with simple supplements.  A portion of kids may even be candidates for intravenous immunoglobulin (IVIG) treatments or plasmapheresis.

Many parents also treat their children with homeopathy. The treatment plan for each child will vary based on their symptoms, root cause and the knowledge of the medical professional you work with.   To learn more about potential treatment options, click here.

5) Be Prepared For “Flares”

Squishy has had his share of “flares” since we began treating the strep and virus about a year ago.  I can tell when he’s flaring because he’s extremely stimmy, his language drops off and his pupils seem large again. Because his current doctor does blood testing every 6-8 weeks to check viral antibodies, I’ve been able to see a trend with his behavior and the HHV6 antibody levels.  

For other kids who aren’t getting frequent blood work and are known to be affected by strep, parents have purchased home strep kits off of Amazon to do testing without leaving the house. By testing for strep, it’s easier to make a correlation between a suspected flare and a trigger.

Other kids may be sent into flares for a variety of other reasons that include fighting a common cold or simple virus, seasonal allergies or even loose teeth.  A trip to the dentist might stir bacteria that can prompt a flare.

Flares can last from just a few days to months. How each child reacts to a flare will vary, as will treatment options.  Parents must lean on their team of medical providers to support the child during treatment, and especially through flares.   

 

This isn’t an easy road to navigate.  However, when you’re armed with information you’ll be surprised how much easier this journey can become.

Yours in the fight,

Alexis

P.S. Want to hear me discuss my journey with PANS/PANDAS with Lily? Check out the accompanying podcast episode here.

ADDITIONAL RESOURCES

My Kid Is Not Crazy on Amazon Prime Video

20/20 PANDAS Episode

PANDAS and PANS: Clinical, Neuropsychological, and Biological Characterization of a Monocentric Series of Patients and Proposal for a Diagnostic Protocol.

Neuropsychiatric symptoms following sore throat in a young boy.

[PANDAS and PANS in children and adolescents are still controversial diagnoses].

Neuropsychiatric Disorder Associated with Group G Streptococcus Infection

An Atypical Presentation of Pediatric Acute Neuropsychiatric Syndrome Responding to Plasmapheresis Treatment.

Treatment of PANDAS and PANS: a systematic review.

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more...

Stay In the Loop

Click subscribe and join our newsletter so you don't miss out on subscribers-only content, important updates, contests, and subscriber perks.

Follow Us

Let's get to know each other! Join us on your favorite social networks so we can stay in touch and connect with you

Can I Help Cure My Child’s Speech Delay?

Can I Help Cure My Child’s Speech Delay?

Can I Help Cure My Child’s Speech Delay?

Speech delays can be one of the most difficult symptoms families struggle with. Some of our most heartbreaking moments as moms have been when our little guys were clearly hurting or upset but couldn’t tell us what was wrong. Things other parents take for granted like knowing your child’s favorite color or even get annoyed by like endless questions or something as simple as “mommy” or “I love you” are things we wish or pray for daily.

 

Lily’s son was non-verbal when he was diagnosed at 18 months. Even after a year of speech therapy, he had made no progress. It wasn’t until she started supporting his body systems with nutrients and making diet and environmental changes that he started speaking.

This blog is a companion to our YouTube video Autism Treatments: Can I Cure My Child’s Speech Delay. Be sure to check it out!

These are seven things that have made the biggest difference in our journey to help our children find their voices:

Methylcobalamin (MB12)

Methylcobalamin is not just a B12 supplement, it’s a methyl donor. That means it helps to “turn the wheels” in the body’s methylation cycle. For more on that check out our video. The majority of children respond well. Most notice increasing speech gains with continued supplementation. Many parents list methylb12 (methylcobalamin) as one of the heavy hitters in increasing speech and language. We strongly recommend reading the resources and writings by Dr. James Neubrander. He has several if you’re interested in reading more about this topic.

 

Diet Changes

There are conflicting studies on whether or not diet changes can affect autism symptoms. The ones which don’t find a correlation are typically shorter studies. Studies which show positive correlation are longer, like a year. This makes sense! Gut changes, healing, and uncovering inflammatory foods can take time, especially in our kids.

Removing dairy and gluten help many kids. Limiting or removing processed foods is a good idea for anyone seeking health. There are numerous diets available. Knowing which one to choose, where to begin or how to proceed can be overwhelming. In our experience and from our research, about 80% of kids improve with diet changes. Our first course, Heal With Food, covers this in-depth and gives our members the tools and support they need to be successful.

Home Detox

There is research to suggest that a large percentage of children on the spectrum have dysfunctional detoxification processes. When that system isn’t functioning very well it gets very easily overburdened. Removing as many environmental toxins as possible can help. We recommend the app Think Dirty. It can help parents determine which home products have the fewest toxins. When they know, they can make healthier choices. The fewer toxins a child is exposed to at home the better.

Heavy Metal Detox

Many parents see improvements when they carefully and slowly support the detoxification system. There are many suggestions out there for detox, but not all of them are safe or effective. Be sure to work with an experienced provider and do your own research before starting a detox protocol.

After doing months of research, we chose Andy Cutler’s protocol for our own kids. We talk about our experience and provide information and resources within our private community. There is also other information available online.

Feeding the Brain

As we discussed in our YouTube video, many kids have motor planning difficulties that make speech difficult. Speech production requires the brain to be able to send information to the muscles responsible for speech. This is called motor planning. One thing that supports the brain’s motor planning capabilities is healthy fats. We go into more detail about how this works in our video.

Our own kids and many others have benefited significantly from this protocol. When something works you want to share it with as many parents as possible! We strongly recommend Kelly Dorfman’s book Cure Your Child with Food for the details of her protocol. She provides a ton of other useful information for improving the health of your child.

Addressing Immune Issues

When a child’s immune system isn’t functioning properly due to leaky gut, a heavy viral load, coinfections like Lyme disease, or PANS or PANDAS the brain struggles too. The inflammation in the body can also be in the brain. Symptoms can be overwhelming. This subset of kids on the spectrum have a number of unique challenges. When immune system inflammation is treated and controlled these difficult symptoms can resolve. Alexis noticed that once she and her provider started treating her son’s PANDAS that his speech took off.

Traditional Therapies

Speech and occupational therapies, as well as behavioral therapies like Applied Behavioral Analysis (ABA) and RDI/Floortime, can certainly help your child increase their speech capabilities. However, what we found is that our children weren’t making much progress with traditional therapies until we supported their bodies. Once we addressed the medical/nutritional issues their progress and development increased dramatically.

Starting speech therapy, and occupational therapy if indicated, as early as possible is key for kids on the spectrum. If you aren’t seeing much progress it may be because the body needs additional support. We hope this information gives you a starting point for helping them move forward!

Want to know more? Check out our podcast just for parents like you!

Listen on iTunes

Listen on Spotify

Listen on our Podcast Page

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more…

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more...

Stay In the Loop

Click subscribe and join our newsletter so you don't miss out on subscribers-only content, important updates, contests, and subscriber perks.

Follow Us

Let's get to know each other! Join us on your favorite social networks so we can stay in touch and connect with you

Alexis Shares Her Story of Healing

Alexis Shares Her Story of Healing

Alexis Shares Her Story of Healing

When we first heard about biomedical treatments after our autism diagnosis we scoured the internet for autism recovery stories.  We had to know it was possible, that it was safe to hope.

With each story we read, that hope grew a little brighter. That’s why it is so important for us to share our stories, and as we grow, hopefully the stories of our members. Not all children recover, but almost all can experience improvements in their health and quality of life. This is our story of healing.

Diagnosis and Despair

We got the autism diagnosis for my son on May 5th, 2017. I came home from the diagnosis appointment with the psychologist and looked at the stack of paperwork they handed us.

The first thing I did was look up the subscriber benefits phone number for our insurance company so I could call to learn about coverage for the 20 hours a week of behavioral therapy we were told my son needed.

After sitting on hold for 10 minutes the rep informed me that “ABA therapy” wasn’t covered.  Great. What were we supposed to do now? Thousands of dollars a month out of pocket for therapy wasn’t in the budget. I spent the next few days angry. Mad. FURIOUS. ABA was it.  

Yeah, I could join the local autism support groups for commiseration, but that wouldn’t help my kid. Was he destined to special education and therapy for the rest of his life? Were college, marriage, and babies no longer in his future? Grief. A grief that manifested itself in me being short with my husband, angry at drivers on the road, and mad at my other children for no good reason at all.  

A Glimmer of Hope

I reached out to a former co-worker who I knew had a kiddo on the spectrum.  When I asked if they were doing ABA for their son, he said “You need to talk to my wife…she takes care of all of that.”  He connected his wife and me up via FB messenger and we began to chat.

It wasn’t until she said that opted out of ABA and were doing “biomed” for autism that I learned we had options. What the heck?!  Why didn’t the diagnosing psychologist tell me about this? I spent many hours reading the studies and watching videos of recovery that she sent. I HAD HOPE! There was ample evidence out there that kids could recover from autism. The stories of recovery were so compelling. SIGN ME UP!

 

Monumental Improvements

We’ve been a biomed family for about a year now. My son has made massive progress from where he was the day we got our diagnosis. This even includes a 5 month period of deep regression (I later fought hard to find out my son was battling a hidden strep infection and a virus that resulted in encephalopathy.)  

I determined that some of the foods my son was eating were causing an immune reaction that resulted in inflammation, making the symptoms of autism more prominent. Over the last year, I’ve learned so much about the systems of the body and how they’re all connected.  Through proper nutrition, treatment of viral, fungal and bacterial infections, we’ve been able to help heal my son’s body and calm his immune system.

Through proper nutrition, treatment of viral, fungal and bacterial infections, we’ve been able to help heal my son’s body and calm his immune system.

We are watching the “symptoms of autism” diminish every day. My son can now complete puzzles and is playing with toys more appropriately.  He’s engaging his family and peers in games and activities. He’s using words to ask for what he wants. His attention and focus has improved. He’s sleeping more soundly and waking up rested. Potty training is going well! Recently, his is ATEC is down to 41 from 57.  Yay!

Hope for the Future

As we continue with treatment and ABA therapy for Squishyboy, we are better able to weather the ups and downs. It’s so much easier to handle rough days when you have the data and support that let you know you’re on the right track. Behaviors and symptoms become signposts for shifts in his supplements instead of something we just had to bear or were clueless on how to handle. It’s such a relief.

I’ve got big plans for my little guy…he’s got a great life ahead of him and he’ll go on to do big things. He’s already come so far. <3

I’m incredibly glad you found us because I want to offer you this same hope for healing.

All my best,

 

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more...

Stay In the Loop

Click subscribe and join our newsletter so you don't miss out on subscribers-only content, important updates, contests, and subscriber perks.

Follow Us

Let's get to know each other! Join us on your favorite social networks so we can stay in touch and connect with you

Holidays on the Autism Spectrum

Holidays on the Autism Spectrum

Holidays on the autism spectrum

Holidays on the Autism Spectrum

For many, this time of year means traditions, big meals, and gatherings with extended family. It can be a time of celebration, connection, and joy. However, holidays on the autism spectrum can be a very difficult time. This is especially true when you and your family are still adjusting to a diagnosis.  When your child doesn’t understand or fully participate in the traditions you hold dear it can be hard and all of the changes can be difficult for your child. 

We know not all of our readers celebrate Thanksgiving or get pictures with Santa, but we hope that sharing Alexis’ story gives you hope and comfort through whatever holidays you cherish this season.

Positive memories

When I was a kid, Thanksgiving meant all of the cousins playing together for hours while the adults did adult-y things.  We ran, chased and played games. The eventual sadness came when the day was over and it was time to go home.

Now that my cousins and I have kids of our own,  we all still get together for Thanksgiving. It’s fun to watch the kiddos play with each other just as we did.  However, there was a time when I dreaded the approaching holiday season.

When normal is exhausting

At Thanksgiving, while all the kids were running around and playing hide and seek, my kiddo would be by himself. He wouldn’t engage with the other kids.  I’d spend the day making sure my son wasn’t trying to climb up furniture or try to eat something random he found on the floor.

My husband and I would be on hyper-alert, watchful in case our son decided to sneak out a door into the snow or get into the million other things that weren’t child-proofed like they were at our house. I wouldn’t get a chance to catch my breath, chat with my grandma, or enjoy a glass of wine.

I’d leave the festivities emotionally wiped. It’s so hard to see your child so drastically different from other kids. Initially, I’d get excited for the build-up to the holidays. Then came the realization that my child didn’t fully understand what the excitement was all about, nor did he really care to participate…. and it broke me.

My Santa Secret

It was devastating to see the kids waiting patiently in line ready to visit the mall Santa, while I had to hold on to my boy with all my strength because he was wiggling in my arms, screaming and dying to get away.  Then actually willingly sitting on Santa’s lap? Forget it.

Recently, I looked back on the mall Santa photos..the first one in 2014, my guy was 2 weeks old. The year later, he was a darling little one year old. 2016 rolls around and you can visibly see that something had changed in my kid.  (My son is one of the kids that “regressed”…in our case, around 14-18 months we noticed a big decline.)

Last year’s Santa pic was such a cluster, that I actually jumped in to hold my kid still for a photo. Enjoying holidays on the autism spectrum can be easier when you compromise and adjust your expectations. Make something work for you and your child as best you can.

You’re probably asking why the heck I continue with the Santa pictures?! Well, each year, I secretly hope that this is the year that we’ll get a good photo… and at least in photos, things appear…dare I say, normal?

Hope and Gratitude

In May 2017, my kiddo got his ASD diagnosis.  By June 2017, we were full-on biomed, an approach to treating the medical symptoms of autism. The goal is to increase health and quality of life.

Over the last year and a half, I’ve seen my son grow and achieve so much. He was able to make this progress because parents – also with special needs kids-  took the time to share their stories of recovery, giving me hope. Their experiences with autism treatment helped me understand our options. In turn, pointing us in the direction that made sense for my kid. For that, I’m eternally grateful.

My son’s speech is exploding, he’s following two-step instructions, he’s able to match and sort and use the language he has to get most of his wants and needs met. He’s sleeping like a rock through the night and he’s almost fully potty trained.  HE’S PLAYING WITH HIS COUSINS!

This is the first Thanksgiving (and holiday season, really) since before my son was two that I’m actually looking forward to. I feel like we’ve turned a corner and my son is heading down the path to recovery. I know his language is lagging behind other kids his age, but he’s making steady progress.

He probably won’t sit down to eat for the duration of the big meal, but that’s pretty typical for kids his age. Sitting still is hard when you’re 3! I’m not sure if he will understand all of our family traditions this holiday season and our holidays may still have their challenges. I will be doing my best to stay present, relax, and enjoy the season.

I have so much to be thankful for this year.  And it feels good to finally be at this point…so good.

New Traditions

Perhaps you aren’t in a place where you’re looking forward to the holidays.  There are so many parents who are right there with you even if they aren’t talking about it. We’ve been there too.

What helped me in the period of time between the decline, diagnosis and eventual improvement in my son’s symptoms through autism treatment was making new traditions of our own.  

Last year, we stayed home in our jammies for Christmas instead of dashing off to auntie’s house in fancy holiday clothes. The kids actually got to relax and enjoy their gifts instead of being plucked away to go have Christmas dinner elsewhere.  

We did Easter a little differently than in years past.  We opted out of the 4th of July neighborhood parade and went swimming instead. All of these alternatives were fun for the kids and honestly a lot less stressful for us too.

Initially, it stung a little to not do the things that we’d done previously, but we were able to adjust and create a new normal that worked for our family.  

My wish for you this holiday season is that you find your new normal, even if it’s just temporary. Lastly, please remember that it’s ok to be disappointed…as long as you don’t lose hope.  <3

Hang in there,

Alexis

2019 UPDATE:

Since this post was written in 2018, Squishy has made undeniable progress.  We spent a little over a year treating the virus that caused inflammation in his brain and compromised his immune system.  Now that the virus is behind him, we have shifted our focus to treating his mitochondrial dysfunction. 

Through the implementation of a customized mito cocktail, we’re able to support his body on the cellular level. (Think of it like putting premium gasoline in a car – the car performs better!). When his body is properly supported he thrives.

Since last Thanksgiving, Squishy has shaved 14 points off of his ATEC score. He is fully potty trained and is using 3-5 word sentences.  He’s able to answer questions, express his feelings and ask for what he wants.  Fine motor skills are improving and new interests have emerged.  He’s so much happier! 

We’re thankful that we were able to uncover the root causes of his issues and address them. This was possible because I learned about our options and about the testing we needed to do to give us a direction. We were able to do this through collaboration with skilled providers and with the support of other parents to keep us going. 

Our hope is that you’re able to uncover the puzzle pieces for your child and that you too can be celebrating a year of progress and growth. More than anything we want you to know that there is hope. We’re here to support you along the way. 

Wishing you and your family joy, health, and happiness. . .

Alexis

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more...

Stay In the Loop

Click subscribe and join our newsletter so you don't miss out on subscribers-only content, important updates, contests, and subscriber perks.

Follow Us

Let's get to know each other! Join us on your favorite social networks so we can stay in touch and connect with you

One Mom’s Experience with Autism Spectrum Recovery

One Mom’s Experience with Autism Spectrum Recovery

One mom’s experience: A story of hope

When Lily asked me to share my story about my daughter, Emma, and her autism spectrum journey, I wasn’t sure at first if I could. Our journey has been long and it’s been so hard at times that parts of it are still very emotional and difficult for me to revisit. Once your child is recovered, you just want to move forward and never look back, but I know that my looking back might help someone else to look forward.

The Autism Spectrum Diagnosis

Emma hit all of her developmental milestones up until around 16 months and things deteriorated. She stopped talking. She stopped looking at us. At first I thought she had lost her hearing. We took her to the doctor and expressed our concerns. He suggested we get her fully evaluated at the local Children’s Hospital, so we did.

I was completely unprepared for an autism spectrum diagnosis. The doctor told us that she would probably never talk again and that we should “come to terms with that as soon as possible.” I was so angry. Deep inside I was afraid too. I asked what we could do and he said, “put her in ABA and hopefully she will be moderately functional.” I sobbed all the way home.

Searching for What Comes Next

The waiting list for us to get ABA, the only thing we were told could help, was over a year long. Within a few months, my daughter was toe walking, hitting herself in the head, constantly chewing on non-edible objects and had non-stop ear and bladder infections. She was hardly sleeping and was constantly leaning across furniture, which I later realized was because she was horribly constipated.

I initially just started looking for something I could do while we waited for Emma’s name to hit the top of the waitlist. I was desperate, unbelievably stressed out, and the self-harming was becoming terrifying. She’d wake up in the middle of the night and slam her head over and over into her headboard. I felt so helpless and I would just try to hold her, both of us crying. It was a very dark time.

Discovering the Root Causes

I learned through research that Emma had a damaged immune system. This led to viral infections her body couldn’t kick on its own. She also had a damaged gastrointestinal system, leaky gut syndrome, and bacterial and fungal overgrowth. Her sensory perception was on overdrive, making noises unbearable and causing her to only be able to wear three very soft pajama dresses without throwing a fit. My partner and I were beyond exhausted and our marriage was beginning to suffer.

One of the first things we tried was Andy Cutler’s Chelation protocol. We saw improvements in her sleep, self-harming, and sensory issues within a few weeks so we kept going. We changed her diet and her gut started to heal. I read that methylcobalamin B12 (often shortened to MB12) could kick-start speech so we flew out to meet Dr. Neubrander. Although we had some increased hyperactivity at first, we finally started to get some words back. We added HBOT (hyperbaric oxygen therapy) and she continued to improve.

Finally Seeing Hope for a Thriving Child

Within two years, she was fully verbal. She still has a slight delay, but she was able to start kindergarten without an aide. She is now thriving socially and academically and, although we still do some supplements, we are expanding her diet and feel she is pretty much recovered.

Her ATEC was 129 when we started and was 7 the last time I did it and that’s just because she was still a bit behind with speech. I haven’t done it since then because I haven’t needed to. She’s a little quirky, but in all other ways, she’s a typical kid. Most importantly, she’s happy and no longer in pain.

Final Thoughts

I didn’t set out to “cure her autism” as a few people have asked me. My only goal was to get my baby healthy, to stop the self-harming, the constipation, the constant infections. I wanted her to be able to sleep. I wanted to be able to sleep. When she was hurt, crying, or upset I wanted her to be able to tell me why so I could make her feel better. I just wanted her to be okay. As we healed her physical issues it was like her brain was able to pick up with development where it left off.

She was evaluated one last time for 1st grade and didn’t qualify for an IEP and has no diagnosis.

Her return to health has been hard-fought, a lot of trial and error, so many tears, and a fair amount of money. There were times I almost gave up. I can’t bear to look at pictures from that time and even just writing this has been difficult. Even with all of that, I’m glad I fought for her health and for her voice.

I hope I didn’t discourage anyone from embarking on this journey, but it was important to me to be be honest about how challenging it’s been. Like climbing a mountain, it’s hard and sometimes you want to quit or think you can’t do it, but the view from the top makes it worth everything. Hang in there and don’t be afraid to begin. It’s my wish that you too can someday share your child’s story and pay hope forward.

Join Our Private Community

Courses that teach you about the biomedical approach, a community where you can ask questions and get support, a provider directory, members only perks and more...

Stay In the Loop

Click subscribe and join our newsletter so you don't miss out on subscribers-only content, important updates, contests, and subscriber perks.

Follow Us

Let's get to know each other! Join us on your favorite social networks so we can stay in touch and connect with you