Recipe 4 Recovery
Our Story and Updates
First, a little background.
The pregnancy with Jacoby (ja-KO'-be) was full term and uneventful but as he was born, the cord was super tight around his neck. The doctor cut it before he was even all the way out. He was very dark purple, unmoving, and it seemed to take forever for him to cry.
There weren't signs of any issues at first - he babbled, rolled over, clapped, pointed... But then we noticed he was really floppy - I was still having to put pillows around him when he sat at 8 months old because he would just fall over. He didn't crawl until 11 months, and then didn't walk until closer to 16 months... So he wasn't one that developed normally and then changed overnight - He just seemed to gradually get further and further behind.
We noticed at the first birthday that he had no interest in everyone singing for him, he didn't care about his presents, he didn't dive into the cake... He was barely saying two baby words at 18 months (mama and baba) but even they didn't seem to be connected to me or the bottle, it was like he was just babbling meaninglessly.
Fast forward to age 2 1/2 and he was totally unresponsive - didn't respond to his name or to anything you said - it was like he was deaf (although hearing tested normal). He spent about 80% of his time screaming at the top of his lungs. We were very strict about the gluten-free, casein-free diet, he took probiotics, we treated for yeast, we treated for metals, he had 40 hours per week of therapies and ABA and still he went backwards.
Fast forward to age 4 and he was incredibly aggressive with his younger brother - I mean holding the two year old's head underwater in the bath and again in a mop bucket, trying to drown him... (I don't believe that was his intention but the outcome would have been the same regardless) Pushing his brother down the stairs... Slamming him face first onto the tile floor... You name it. If he could think of it, he was doing it. Meanwhile we were still strict with the diet, still doing 40 hours per week of therapies and ABA, still treating yeast, metals, viruses, bacteria, everything we had heard of. At this point he could speak in 1-2 word phrases like "Juice please" "help" etc... but all the speech was just asking for what he wanted - nothing social and no questions.
By age 6, he had tested positive for Lyme disease and we treated that three different times. We saw some improvement in that the screaming disappeared (although it was replaced by an extreme mess-making behavior), the aggression was still there but it lessened in severity. We were still treating for everything listed above, still strict with the diet, and still doing all the therapies and ABA. At this point he could speak in 3-4 word phrases like "I want apple please" but all the speech was memorized rote phrases asking for what he wanted - nothing social and no questions.
He was about to turn 8 when we went to the Amen clinic in Costa Mesa, CA and we had hit rock bottom with him at this point. He was barely talking, constantly stimming, he was more aggressive again (and was getting bigger and stronger now) and we had a new younger brother in the picture... The mess-making included opening food and dumping it on the floor, smearing it on the walls, throwing it on the ceiling, and more extreme mess making that I won't detail on the internet. Anything he could destroy, he would, over and over all day long. As you're cleaning what he did five minutes ago, he was off destroying something else.
BUT FIRST! 5 days prior to our trip to California, we took Jacoby to our Church where the lead pastor anointed him with oil and he and another pastor prayed over him for wisdom for the doctors and for a miracle if God saw fit. I made the picture below during the 5 days in between. You have to believe it before you can receive it! Everyone who knows him was praying for it. We all believed it. I feel like this was an absolutely monumental part of what happened next.
When we got home from the church that night, Jacoby's negative behaviors seemed to be cut in half. He still did them, but less often and he was able to "snap out of it" more quickly. He also almost completely stopped smearing the mess that I won't detail on the internet (although most autism parents will know what I'm talking about). He only did it once in the five days between the prayer and the scans - when he normally did it several times per day, every day, and he hasn't done it again since. He also stayed dry in his bed the night of the prayer for the first time in forever and he continued to stay dry every night (with only two accidents so far in four weeks). He even stayed dry during the 8 hour drive to California, when he normally would wet his pants if he's in the car for more than 20 minutes.
Things were definitely looking up after the trip to the church and we were expecting the doctor in California to find something fixable on the scans, thereby lessening Jacoby's symptoms and leaving us with a milder form of autism. But God wasn't done yet...
We went to the Amen Clinic and we saw the doctor the receptionist recommended because he specializes in autism. We got there and did the scans (Jacoby had to be sedated in order to lay still for it) and once everything was done, we saw the doctor later that day for the results.
We sat down and the doctor basically said,
"Ok let me show you why your son is not autistic..."
"WHAT?!" We'd been treating him for autism his whole life - it totally looked like autism based on the delays and behaviors - he even goes to a school specifically for kids with autism where he was one of the lowest functioning kids. How can he not be autistic?!
Turns out his brain scans revealed that his brain activity is in all the right places, which is not what you'd see in true autism.
These are his scans shown next to an example of a typical child of the same age. The white is the important part and you can see how Jacoby's white activity is in the back of the brain where it belongs.
For comparison purposes, here is the scan of a truly autistic child's brain.
Well if his brain activity is in the right place and he's not autistic, what's going on?
The doctor found that he has brain inflammation and evidence that the brain was very inflamed at one point (he thinks either because of the cord being so tight or possibly a virus as an infant - maybe both) and the intense swelling pushed the brain up against the inside of the skull causing some (thankfully reversible) damage.
This image shows Jacoby's scan next to a typical sample.
You can see the damage in the circled area which would be the left temporal lobe. It appears to cave in where it should poke out. The doctor explained that this type of damage in that area would cause difficulty with reading facial expressions, understanding social cues, and word retrieval, which would explain his speech delay, despite the fact that he understands everything that's said to him.
-Quick Note- Jacoby had a normal MRI at age 5 so the MRI doesn't give nearly enough detail. Don't rule out a brain issue over a normal MRI! His hour long EEG at our local hospital was also normal, however, the QEEG at the Amen Clinic was only one minute long and gave us TONS of info, including a map we can use for future neuro-feedback to regulate the brain waves.
We started step one of the treatment program specifically based on the scan results on 3/15/2017. It is an anti-seizure medication because the doctor felt like the damage in the one area was causing little unnoticeable mini seizures (we had no clue) which could be responsible for his impulse control issues, his sudden bouts of aggression, his mess making, and overall mood swings. As soon as we started the new medication that night, his behaviors, which were already noticeably improved since the prayer, took another leap forward.
The behaviors were cut to about 25% since that night when he took that first pill. We took the kids to disneyland the following two days because it was only 15 minutes from the clinic and he was AMAZING! He waited in the lines, sometimes as long as an hour, he rode everything he was tall enough for, he was absolutely awesome. And I had packed ten pairs of spare pants for him and didn't need one. We were thrilled!
The bladder control problem that seemed to disappear with the prayer has lasted.
The mess smearing that seemed to disappear with the prayer has lasted.
The behaviors that got better with the prayer and then better still with the medication have remained more under control.
He's more engaged at school.
He's performing better academically.
Not only is he responding when they ask him to do his work, but he has teamed up with a partner and is helping that child by prompting him with answers!
His teachers have noticed a huge difference.
His eyes are clear instead of cloudy and far away.
This child, who had never asked a question in his life... Not even baby questions like, "What's that?" or "Where's Daddy?" is asking questions like:
"What's happening?"
"What's wrong with me?"
"Why did that happen?"
He used to ignore questions for the most part, and now he's responding to, "Do you want juice?" with "No, water please."
He's obviously thinking clearer and more quickly, and we're only on step one.
Step 2 for Jacoby is HBOT once he's been at full dose of the anti-seizure med for a few weeks. The HBOT will push blood and oxygen up into the brain which should actually correct the blood flow, helping the parts of the brain that have been starving for oxygen and nutrients all this time, and should help reverse the damage. The doctor expects this to bring speech and he's thinking it should normalize within 12-18 months. WHAT?!
The expectation is that when we bring Jacoby back to the Amen Clinic in 18 months to 3 years, his scans should reveal a healed brain belonging to a boy with little to no remaining symptoms.
One quick note: I have always felt like Jacoby would not grow up to be an adult with autism. I always felt like we would figure out how to help him and once we did, I would write a book about our experiences to help other families. God and I have had that deal for the last 7 years - If He would lead us to the things that would help our son, I would get the message out to everyone - no matter what it was!
Well God's perfect timing is going to help that book be the best it can possibly be. The doctor explained that we want to normalize Jacoby's brain before the next spurt of rapid brain growth. Normalizing the brain could take up to 3 years and that next brain growth spurt should happen at age 11. A week after those scans, Jacoby turned 8.
That means that although we struggled without answers when he was 2, and 3, and 4, and everything we were doing made little to no difference when he was 5, and 6, and 7, we were finally led to the things that would help him at the last possible minute - Late enough that Jacoby had as much time as possible to create as many "autism" memories as he could (which will be very helpful in the book) while still leaving just enough time for his brain to heal before the magic age of 11.
God's timing was absolutely perfect.
UPDATES
^ Prior to this, he had never asked any questions, not even the baby questions like, "What's that?" or "Where's Daddy?" in his life. Ever.
^ Prior to this, he would normally just stand around at the park without playing. If he did get on a play structure, he would usually just choose one and do the same thing on it over and over.
^ This was the first time he has ever opened his presents excitedly and actually looked at what was inside. Prior to this, he would require lots of prompting and would finally rip the paper off, only because he was told to, and then would toss the gift aside without actually looking at it.
^ The first question anyone else has ever heard him ask!
^ Prior to this, his school notes often said he was frustrated, he bit a child, he scratched a teacher, etc... He had good days, but he hadn't ever had a good WEEK!
^ Prior to this, he would respond if someone else leaned in for a hug or kiss, but he hadn't ever initiated it, certainly not verbally!
He started HBOT on 5/30/17 and he wouldn't wear the mask! :(
Then that night, he fell in the bathtub and broke his permanent front tooth in half :(
The dentist fixed it the next day and while he was strapped down for the dental work (sad but totally necessary) he had the nitrous mask placed on his face. He resisted and struggled at first, but later realized the nitrous was kinda cool! He got used to it quickly and the next day, he wore his oxygen mask at HBOT just fine and has worn it ever since!
Gotta love when God turns an accident into an opportunity!
We added the essential oil Sacred Frankencense to Jacoby's routine! Studies have shown that Frankencense can increase the levels of oxygen in the brain by up to 28%. We put it in a roller bottle and are rolling it on his feet, wrists, and neck.
I call it mini HBOT in a bottle. LEARN MORE!
6/26/2017
We hit 20 hours of HBOT today! We are halfway to the 40 hour mark where the doctor says we should see obvious improvements in speech. :)
MORE TO COME!
Relevant Links
"How do you know unless you look?"
"Did you know that psychiatrists are the ONLY medical specialists that virtually never look at the organ they treat? Think about it. Cardiologists look. Neurologists look. Orthopedic doctors look. Virtually every other medical specialties look. Psychiatrists guess."
- Dr. Daniel Amen
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