G, In Five Years

Tomorrow is your birthday. You are a positively sweet, snuggly, smart and stubborn guy. There is no one like you on this earth. I look back at the last five years with so many different feelings. My biggest feeling is that I am proud of how hard you work to learn and to manage your feelings every single day.

“He’s still only two and a half,” I would say at those first doctor’s appointments with G. I wanted to help him right away and thought it would happen fast. It felt like we were so early and we had so much time. He stopped eating a variety of foods and would push them away. He was not talking or even pointing at things.

“He’s still three,” I said at the next appointments. He did not sleep well and woke up multiple times a night. He would cry, I would cry. He had breakdowns over small things and the worst part was that he could still not talk or communicate to tell us what he wanted or what was wrong. We took him to an occupational clinic and he was afraid to walk on their floor because it was a different color in every room. He cried and screamed. We worked through it and he overcame his fears. But then he didn’t want to get on the swing or climb on most of the equipment. He was upset still more than he was happy. We decided to look into ABA and focus on his diet and supplements to help him get better. Really we were grasping at dials in the dark. In the big picture he could do many things so well for a three year old, he could write numbers from 1-10 and was an iPad wizard. But through all of his learning, he was always battling his overwhelming feelings and sensory overload. That was all in the way of G being able to be completely and simply G. My research on autism, its causes and treatments, was daily and nightly.

“He’s still only four,” were my words at more handfuls of appointments. But now things were solidifying: we found the right ABA clinic, had so many more doctor’s appointments and did so much more research. He was better and more calm. He was learning ways to play instead of gravitating towards toys with numbers and books with numbers. He started using Proloquo on the iPad and very well. We could communicate and he could do more than grab our arm and pull us somewhere. We could ask him questions, and he could choose what he wanted. He got better with routines, bedtime improved, everything improved. He started sleeping through the night finally. He was no longer interested in some things he used to be good at, like writing numbers, but it wasn’t a priority at the ABA clinic or at home. With G, you really have to get into routines and repetition to keep him going or he might lose the skill, but that is like any kid really so I try not to worry about how that goes.

“He’s still only five,” will be the words I say at his first appointment of 2020, next week at an immunologist clinic here in Portland. I am interested in going down the road of investigating the possibilities of autoimmune encephalitis and allergies causing inflammation in his brain. We have had so much progress, and when you write it all down, it can be seen by anyone. But it’s hard to see it at times when you see him developing new OCD tendencies. He has now been at the same ABA clinic for one entire year and it’s all amazing progress. G drinks from a cup now and we have retired his Camelbak bottles with the straws he would chew through over and over. He is able to stop using an iPad or stop watching TV by us just saying “let’s take a break” and he walks away without any breakdowns.

We got him SMOs (Supra-Malleolar Orthosis inserts for his shoes) last month to help him to stop walking on his toes and make sure he doesn’t have a short heel cord. He actually doesn’t mind wearing them and it seems like it will go very well. So we are excited about that too – plus when he wears them it seems he focuses more on where he is going and what he is doing. Maybe he is thinking less about what his toes are telling him.

There are still so many more things we can try to help G. There are so many people helping kids and adults with autism all over the world. I see countless statements like this on websites:

The Council’s vision is to enhance the lives of individuals with ASD across their lifespans.

What would help individuals across their lifespans the most? To ease or remove their symptoms. This has been going on far too long to not be able to go to one doctor as soon as you know something is going on and get help right away, instead of struggling through hoop after hoop for years without any real direction. I am really happy when I see a news article about another airport opening a sensory waiting room, or sensory emergency rooms at hospitals, and special bathrooms, etc. but what I really want is to cure these individuals who cannot speak and who are caught in such nets of sensory overload. All of these rooms and special places are reactive. I want preventive.

During all of these happenings, and all of the moms and dads researching every day about their kids, posting in Facebook groups, and sometimes silently suffering through another day of worries and hopes, life is going on. And G is working hard each day. He goes through his therapy days and still comes out of that building with a smile on his face.

G’s next five years will surely be miraculous, no matter what. Happy Birthday, little nugget.

Myopia Atropine Drop Cure for Kids

I signed up my oldest son for a clinical trial for his myopia in June of 2019. I have learned a lot since then about myopia, a sulfate called atropine that is derived from the belladonna plant, and the history of it all.

What’s myopia? It’s nearsightedness: one of the most common eyesight problems. For centuries. For the entire history of the planet. And it’s only becoming more and more common. People with this condition can’t focus their eyesight on far away objects, making them appear blurry. Nearsightedness affects about 40 percent of all people in the United States, according to the National Eye Institute. By 2050, it will be 50 percent of the entire population of the world. If you don’t stop it while you are kid, you can never reverse it!

Thanks to clinical trials in Asia that proved atropine works in arresting myopia, there are companies that have started trials in the US and the UK to gather more data. My son is enrolled in Phase III of the Champ Study – the last phase which will end in three years and hopefully result in the FDA approving the use of either 0.01 or 0.02 atropine drops in the USA for myopia.

But boy, this has been a long time coming. And so many people have suffered unnecessarily.

One of the earliest statements (that I can find) from a US trial on investigating atropine drops for myopia was in 1978. NINETEEN SEVENTY EIGHT. When people looked like this:

Okay so in Portland people still look like the 70s Microsoft team but you get my point.

The trial from 1978 stated this:

After all this time, through these tiny shards of proof that surfaced in the USA, and in other countries that very factually proved through tons of time and data fluffed with more facts, that atropine given once daily STOPS NEARSIGHTEDNESS in growing eyeballs of children, you still can’t get it prescribed easily to a kid in the USA before THEIR EYEBALL STOPS GROWING. And really it still keeps growing even past age 20, and might not truly stabilize until age 30. So imagine, if you know your child cannot see well by the age of two or three, you could have such a huge leg up on stopping their eyes from getting worse and making their quality of life SO MUCH better.

So Liam is now in this CHAMP trial that seems to be the final frontier for atropine, that might allow kids to be prescribed it sometime past the year of 2022. There are 483 kids enrolled in the trial at 26 locations around the world: 1) Barcelona, Spain 2) Berkeley, CA 3) Boston, MA 4) Budapest, Hungary 5) Coleraine, Ireland 6) Columbus, OH 7) Danbury, CT 8) Dublin, Ireland 9) Elkins Park, PA 10) Forest Grove, OR 11) Fullerton, CA 12) Kirkland, WA 13) Lancaster, PA 14)  London, Great Britain 15) Madison, WI, 16) Maitland, FL 17) Memphis, TN 18) New York, NY 19) Peoria, IL 20) Raleigh, NC 21) Rotterdam, Netherlands 22) Saint Louis, MO 23) San Antonio, TX, 24) San Diego, CA 25) Spokane, WA and 26) Tucson, AZ.

The CHAMP trial builds upon prior ground-breaking studies conducted in Asia, which demonstrated the safety and efficacy of low doses of atropine and concluded that low-dose atropine slows the progression of myopia in children. The CHAMP study is a 576-subject, randomized, placebo-controlled, double-masked study evaluating the effects on myopia progression in children, with multiple study sites located in the United States and Europe. The study duration is 3 years, with an additional re-randomization for a 4th year of follow-up. Regulatory filing can take place after the 3-year endpoint has been reached. Management of Nevakar has held extensive discussions with both the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) on the protocol and study design and believes there is a clear path forward to regulatory submission in both the United States and in Europe. The CHAMP study represents the largest sponsored randomized controlled trial, to date, in myopia.

So it’s a pretty big investigation on atropine and we are part of it for 3 entire years. These three years hope to bring all of our children a halt to their eyes getting blurrier, blurrier and blurrier. And when they are older a heap of other things can happen with their vision because they have such bad cases of myopia.

But the question is, if this is known to work already anyway, why can’t some of us who have children with already very advanced myopia like mine, just get some atropine drops already? Of course I want to help and do this study, but so far his eyes are still getting worse during the study because we might have the placebo drops.

Gavin Will Be 5.

I haven’t wrote here since June. That feels like a lifetime ago now. My mom died in July. Then the other months just tick tocked along the line. My oldest son and I just got back from a long visit with my dad. My eyes are still puffy and vision is blurry as I look at this screen. I think it’s a combination of travel and allergies. It was such a good and busy trip, especially for my son and for my dad. They both really needed it. I did too of course but sometimes I feel like a puppeteer adjusting everyone’s happiness. (That’s one definition of a parent.) I’m still getting back to normal even though I slept really well. I had a lot on my mind this morning that I needed to figure out. Most of it is about Gavin. He will be five in January and I am simply scared. I want him to talk. I want him to love and be loved. I want him to experience life as we know how to experience it. With autism I know that’s a hard order to fill. And “normal” life for everyone else It’s not always roses but I want him to travel, read, experiment, and be himself. I’d be happy if he became a surfer, or a fisherman, or a nurse, or a food truck cook, or a domino player. It could be the most random damn thing I’ve ever heard of. But I just want him to be happy. 

As I watched my oldest son blossom in maturity during our trip to see his grandpa, I had a tug in my heart for my youngest son to have those moments too. We haven’t even been on a trip together yet. Are trips necessary at this young age? No. But I would like to. I think he would too. And I know there is a way to get him more connected in our world. But how?

For the past five years, we have logged many hours into doctors offices, labs to draw blood, different therapy offices, and the most hours have just been in the car going back and forth. All the while, I tried to give all I could to our oldest son for treasured memories and to capture the innocence of his childhood. Even though my husband and I were always hurting to not see our sons experience all of this as a pair, a team – as “normal” brothers. As Christmas approaches right now, I really don’t have so many precious things on my mind. It’s because I feel like I am losing time. Most of my thoughts revolve around everything logical, real and solid. Doesn’t sound very romantic or whimsical does it? My oldest son is now seven but is already far wiser than his years. And my youngest, although still hanging on to the number four, is much the same although there have been big changes in the past year. They are close in age but they are becoming farther apart in their connection to each other as my oldest soars on in his own development. 

As I juggle these feelings of holidays and the special moments I crave, this year I feel more like a warrior on a mission. I haven’t sat down and planned out the Christmas list for everyone or surprises I have in mind. I haven’t really started buying or making anything to make magic happen. (Okay, I did buy some felt gnomes to hold silverware on the table, but that’s it.) One thing I have done is order two new DNA tests for my husband and I. We’ve done one in the past but I am ready for fresh and new information. Plus I need the info on my BRCA genes so I can start getting tested early for risk of breast cancer, since my mom passed away this year from it. If you don’t take your health into your hands, no one else will. Time is the most precious and magic thing on my mind this holiday. There are only so many of these holidays left to celebrate with your *young* children. There are only so many wild summers left and quiet autumns. The faster I can get Gavin more on track with his communication and awareness, the faster my husband and I can feel like both our boys are together and connected to us in a deeper way. I want that so much.

So step one for this round of trying to accomplish this is controlling the health of myself and my husband. Our kids need us to be around in order to help them thrive. I can’t wait for those tests to come in because they are the peak of getting started again and knowing our baselines. 

  1. tests
  2. schedule check ups, bring our test info
  3. diet, exercise and supplement changes

The next step is Liam. He needs to go to vision therapy in the new year, and we need to practice math, etc. The et cetera is to enjoy being a kid. Easy enough. 

For Gavin: two main things. I want him to see an immunologist, or several of them. And I want to try autologous stem cell transplantation. So far he is seeing Immunologist #1 on January 13th. She seems to be really good and if she can’t answer all of our questions, I hope she can send us to another person who will. As we dig deeper during the year of 5, I need more real answers and less hope to’s in my book.

I read this quote recently, and I think now at 35 I am finally able to live this way:

Real growth is when you start checking and correcting yourself. Instead of blaming others, you take your power back by being responsible for yourself.

It doesn’t matter anymore how exactly Gavin got autism, or how exactly my mom got breast cancer, or how exactly my husband’s vision doesn’t allow him to live a normal life much of the time. These are all things I have researched to no end, and I hope to help others once I figure out the why’s. But right now all I can use my energy for is for fixing what I can and preventing anything worse.

Vaccines. Autism. What to believe?

People are worried about babies under 1 eating honey – I mean, they yell NO, NO, NO HONEY!

But having multiple vaccines every month or two when you’ve barely been out of the womb seems like a piece of cake compared to eating a sticky gel made by insects?

I have a lot in mind for what I want to write, but need more time to figure out how to put it more delicately and carefully. For now this is just a placeholder.

Stem Cell Treatments for Autism

When I was having my first son, L, I was asked to sign some paper to donate my cord blood. It’s all a blur really. They may have mentioned that I could bank the cord blood in case we needed it later. I considered at the time that cord blood was for “diseases” and “serious reasons” that probably would never happen to us. But really, as I said, it’s a blur. No one ever told me about cord blood, or stem cells, or the reasons to bank it. I had other things on my mind at the time, like delivering a healthy baby. I didn’t think too much about what would happen right after, or even in the years ahead. As a first time mom, at least for me, it was all about that moment. I didn’t have a friend or a relative that ever used cord blood, I never heard much about it.

Fast forward to having my second son, G, I must have signed something again to donate the cord blood at birth. I remember having a pamphlet given to me at that time. It may have had info about personally banking it, but I remember the feeling everything gave me was more about donating it. And of course I wanted to donate – so signing everything was no big deal. I think even my placenta was donated that time.

We started becoming more and more interested in stem cells. Many kids with autism were having injections of stem cells via IV and having wonderful results. For some, nothing happened.

We did it for G and it really seems like nothing happened. He had cells from Utah Cord Bank injected into the vein in his arm. But we have no way of telling if something silently repaired itself a little, because it’s not like he started talking. And his sensitivities are still mostly off the charts at times.

Kindergarten, Autism Worries and Moving On

It’s almost summer. My oldest will have his last days of Kindergarten next week. There will be a picnic day, movie day, signing autographs, and I am scared! I am so sad about it but also excited for him to move on, learn and grow. But for my youngest, G, I am just afraid that G will not be ready for Kindergarten on time. We decided G will go to ABA therapy full time, Monday through Friday, 9 to 3, starting in two weeks. He’ll do this all summer, and into this fall, if he seems to be happy and responding well. It’s really a lot so we may end up shortening a few of the days but we’ll see.

I just sent a message to one of the preschool teachers to let her know that we aren’t going to be able to come back. That was a message I was dreading to send. I wanted him to go back there so badly. I wanted a bigger piece of that dream of preschool and all the special moments there. It’s with tears in my eyes that I am saying: it’s done. He won’t go there again, and that’s that. This fall he will be at therapy, and next fall in 2020 he is supposed to go to Kindergarten. This next year is all about preparing him and figuring out what’s next. Inside, I am shaking. I want him to experience everything. I want to talk to him. I just want to talk to him. Without pointing, an app, without pictures.

G and I will visit the preschool this Thursday to get the picture that was on his cubby, say goodbye and give hugs. It’s the last day of school for the class he once was in. I am sure we will visit them again later in the year when G has hopefully made some huge, unbelievable milestones. Then I can cry happy tears and reconnect with them. That’s all I hope for.

My PSA: Take Control of Mental Health

I’ve still been on the research break I mentioned in my last post. I have tried to relax and enjoy the spring time with my family. On many days, I still feel a little helpless as soon as I wake up. A little lost but pushing on. My son is gaining more understanding all of the time but he still doesn’t talk and his theory of mind skills are growing slowly still. He is very much in his own world, on his time. There are no conversations of course, and not a lot of meaningful interaction with his brother. That has been the main sadness for me but I have learned to deal with my feelings and look at the big picture. Some of the biggest progress lately is that we can all ask him for a kiss and he will put his mouth on ours or our cheek. He also has been giving us tiny hugs around our waists or legs while we are standing. And for two weeks straight he has slept all night. I almost don’t want to write about it, in fear of jinxing it. Sometimes he might wake at 5 or 6 instead of 7, but he hasn’t been waking at 1 or 3 wanting water and seeming confused. He also falls asleep faster and without less fuss. This all gives me a big hope for his future.

Since turning 35 my gray hairs have definitely increased. They were probably sprouting anyway but I feel like it makes sense to add this to my story today. The past year has been the most filled. I felt like I was floating along a little. But then my husband had failed eye muscle surgeries, my mom is struggling with metastasized breast cancer and I live so far away, Liam started kindergarten which has brought out good things but he also is often anxious and worried (an all thinking and feeling person, wonder where he gets that from…) and Gavin has autism, still. I kept thinking it was going to slowly disappear and go away. Just like his older brother overcame some of his issues with social skills, I thought it will all happen for Gavin too. After all, we were doing so many good things.

It turns out that most things don’t just disappear once you get them.

There are things you can work on. There are things you can’t. 
Life is beautiful, but unfair.

Overall, it is easy for a lot of people to ignore the mental health problems in the world right now, unless it affects them personally. Or unless you are actively noticing it, like me. Sometimes it feels like a burden that I am seeing it and not quite sure what to do with it all. But I find it’s also keeping me alert and thinking. Add it makes this post possible today.

I live in Portland, Oregon, and I drive a lot every day. I see a lot of people just from inside my car as I putter down Powell Boulevard and 82nd Avenue. There are people with mental health issues who talk to themselves, wave their hands around to another person unseen, and do tricks as if they have an audience they can see. Whether these issues were brought on by drugs, toxins, or genetics, it is one of the most sad things to witness on the daily. I see some of the same individuals a few times a week who are walking no where in particular, over and over. I saw police officers place a reflective yellow vest on a woman who crosses the street a lot, mostly in places that are definitely not crosswalks. They must not have much else to offer for her except a yellow vest. A cover up to a bigger problem with no solution. I also see a woman who travels everywhere on a mobility scooter, her head hanging low because she can’t move it. Often people stop their car and push the crosswalk button for her because sometimes it looks like she wasn’t able to do it for a while. I will take a turn being that person one day, pushing the button.

I see older people in the grocery store with mental decline. They are looking at something on the shelf, just smiling at the boxes with big grins. Are they having a good memory, thinking of something happy? Or is it something else? There is never a dull moment wherever I go. Whenever I get a boost of happiness myself or a feeling of “normality” I see something again and then my mind begins to race about what’s going on with these people, and why? Of course, I am so aware of mental health so perhaps I see the signs of “things” more often. But I definitely know there are issues and want to know how to stop them. There is no reason for anyone to suffer mentally or physically if there could have been any possible way to prevent it.

Sometimes there is a physical trait that can tell you if someone may suffer from a mental abnormality. Gavin has been walking on his toes since he was about two years old. Sometimes if we are walking down the sidewalk he will stop for a while and walk “flatly” but most of the time he pops up on those little feet. It’s to the point to where I think his toes hurt sometimes. He has a new appointment next week to be evaluated for orthotics. I have mixed feelings about this. I know he likes to toe walk or simply just has a need to. I also notice other people toe walking now and I didn’t before. Just this week I noticed two women toe walking. One was on a sidewalk headed to a bus stop wearing black Converse shoes that laced up to her knees. Another woman was walking toward the grocery store entrance as I was leaving. Not only was she walking on her toes but she had her head turned to her right as she walked but her eyes were looking straight. I looked curiously right into hers and gave her a smile. But then I realized that she really was looking past me or she didn’t want to smile. It’s possible that both of these woman have zero problems with their mental health and just happen to toe walk or have an issue from having a stroke. But sometimes the symptom of toe walking does mean other things and it’s very individual on how one deals with it.

What would have happened if these two individuals wore orthotics in their shoes when they were little? Would their life be improved? Or did toe walking happen when they were adults? Do they have problems with their toes or feet now, or are they okay? There is no guidebook for me on any of this. I just observe and research in a perpetual spiral until I find my own answers.

Then I ask myself, at some point, will Gavin stop walking on his toes? Maybe something will click and it will just stop. I feel like when he is walking “normally” with me along the sidewalk that is actually focusing better and not thinking about “feeling” something in his feet. So part of me wants to try out orthotics to force his feet to stay flat and observe the way he acts during these times.

So back to noticing the mental health problem on a nearly daily basis: My husband and I were on a weekend trip. I didn’t notice anyone with a mental health problem in Hood River, Oregon. But when we took a detour on the way back to Portland, we stopped in a little town which I’ll just keep nameless. The only thing we did there was eat at a Mexican restaurant. It looked like the main talk of the town and it was busy with every kind of person from the area. Almost immediately after we sat down, I noticed a young man walk by the table and the corner of my eye noticed that his khaki pants were a little too short. I looked up and saw his face and knew. He was on a lunch trip with a few other young people like him with a caretaker. And again I thought how sad it is that there are so many mental health issues. So many people are not living normal, happy lives. Maybe to themselves, they are happy and feel fine and that’s great, at least. But when I imagine everything they could be doing and experiencing, the sadness is deep. Were their issues present since birth? What are their stories? Where are their parents? I have a lot of questions. Did they try anything when their kids were little? Did they just let the symptoms run their course? I can’t imagine what they all went through.

It’s hard to let anything run its course when dealing with autism. Sometimes you get brave and you try something, or you stop something. And then you wait. We have been on a supplement break for about three months to just give his body a little break and the medicine cabinet. We were emptying many different capsules into Gavin’s food for years. Now he really just takes things at random if I think of it, we give him B12 injections twice a week, and he takes CoQ10/L-carnitine liquid along with a leucovorin liquid twice a day. Since being diligent with just these things, his great improvement with sleep happened. Now with things so calm, we can slowly add in other things again and see what happens.

On top of all this, I worry about myself and my family. While we are okay now, what can we do now to protect our own mental health? I worry about getting older. I read that right now, about 50 million people suffer from dementia. There are children’s books now that tell kids how to deal with grandpa’s failing memory. Everyone says eat the Mediterranean diet, don’t drink out of aluminum cans, take fish oil, and exercise because the key is prevention. There has to be a bigger key than that. This is just too many people with dementia, and developing Alzheimer’s, the most common type of dementia.

I’m at the end of my story for today. While it feels like there is a lot of despair and disrepair in my post today overall, I promise I am happy and excited, although with a careful and watchful eye on all of my family. Gavin is doing great at ABA therapy and his sleep is so good. What more can I ask for right now? We are still on board to give him a stem cell injection, it will be next month instead after I take a trip back home to be with my parents for a few days.

Why I Unsubscribed from Autism News and Alerts

Today was the day. I just couldn’t see this subject in my inbox anymore. For exactly one year now, I had Google alerts set up for autism and a few other search terms relating to it. I also signed up for some newsletters, one being from the Autism Research Institute. I unsubscribed from them all today. I just need a break. Every single day I was looking through all of the news and bits of info about autism that I could handle. Until maybe I just couldn’t handle it anymore lately. The sadness from reading about how many kids are affected now, and the talk of research, research, research and ideas, ideas, ideas – yet parents can’t find doctors easily who know how to help their kids. We go through so much searching and trial and error, almost as if we have permanent blindfolds on.

I read a quote yesterday that felt exceptionally real. It was in a post in a Facebook group about trying to find the right diet, therapies and other interventions for autism and how every child reacts to changes differently.

“Healing autism is like fiddling with three dials on a radio in the dark. You don’t know what the dials are for or even what you are trying to do. But when you hit the dials just right, suddenly you hear music.”

So for the next six months, I promise myself to relax. Gavin is doing well in therapy, he is showing us new behaviors and interesting things every week. And we will be doing our first stem cell injection in April. If we hit another roadblock after that, then I’ll jump back into research.

But for now, we will continue what we have been doing and push through. We’ll focus on making Gavin listen, look and laugh. And taking him and Liam on adventures in the spring and through the summer will be the best. And we’ll be okay.

Where We Are and Where We Will Be

I haven’t posted in weeks now. When G was in preschool I was pretty organized with this blog and keeping up with all changes, big and small. Since winter arrived, we all made it through both the gloomy, soul-searching days and the exciting, snowy days. Today I find the need to just push the words out through my fingertips and make sense of it all.

G has been in ABA therapy more consistently now. Today actually starts the first day of a more solid schedule. One of his therapists left the center in December so January became an unpredictable month. Now he is back to going to ABA Monday through Thursday beginning at 9 AM and sometimes ending at noon or 3 PM. This is creating issues with his “nap cycle” as I feel like calling it. So we are dealing with that as things feel right, or wrong. The important thing is that his therapy is becoming more consistent. I know it’s all working for him when I see him clapping in the car and listening to us better.

But in other ways, he is not used to it all yet. He is scratching us at times and getting very frustrated. He wakes up in the middle of the night, sometimes almost screaming, and there’s nothing more hurtful for me right now than feeling depressed in those hours. And not just because of knowing how confused and upset G feels and not knowing how to tell him it’s okay, and him resisting me holding him. It’s the overall feeling of the unknown future.

For each year that goes by, I could make a list of the different supplements we have tried, the results of blood tests we have ordered with a handful of different doctors, the notes I have of how long he slept, what he ate, and a picture of the still unsent boxes that contain urine tests and squishy gel packs that have never been frozen.

G is four. Four. I cringed when it was almost time for Valentine’s Day. I knew there weren’t any special plans at the ABA center for the holiday. But I did know that at his preschool, if we was still going there, that he would come home with a paper heart and a pouch of Valentine’s. The lack of these little things crushes me inside. But lately I have to ask myself – is this important for me and our family to experience, or is it important to him? The truth is, it is not important to him. It’s selfish of me to even get sad about these things. Of course I want to experience all of these beautiful, sweet childhood moments just like I did with our oldest son. Of course I want them with Gavin too. But what is most important is getting to the bottom of everything else he is actually feeling. He is often frustrated and seems helpless. He stims and taps and hums and groans. His brain is misfiring. His immune system is overfiring. G doesn’t need a pocket of Valentine’s cards, and I don’t either. We can get those Valentines when he is better and when he knows what they are. I need to help him be healthy, to be aware, and he needs more than ABA therapy. He needs a pocket of miracles.

Or an infusion of stem cells. G is four and this is our year for it. I can’t wait any longer. I kept hoping that if took calcium pills for six months that he would stop poking his eyes so hard with his fingers that his eyelids flip inside out. I kept hoping that if he took fish oil and digestive enzymes and broccoli extract and silica drops and zinc picolinate and only had gluten free bread and only drank Fiji water, and gave him B12 injections, that his body would be functioning and clear and his brain would follow. It just isn’t happening. There’s also a chance that he might have PANS/PANDAS, or metal toxicity that needs detoxing and chelation, or bartonella, or lyme, or strep, or a continuous infection of some other kind, that a multitude of more expensive and stressful blood tests could find. Or we could just jump into an IV infusion of stem cells here in the US and just find out if we see any changes. Step one. Then we could get more infusions. Then if that actually miraculously works, we could look into extracting his own healing stem cells from his own bone marrow, at facilities in another country. It really sounds like another rabbit hole, but of a different kind. And this rabbit hole has the same foggy and mysterious map as all of the other things we have tried.

You cannot always wait for the perfect time, sometimes you must dare to jump.

Sulforaphane and Autism, Our Avmacol Experience

There’s a lot I’d like to post about today but we didn’t sleep very well and my brain is a little foggy. (That explains my broccoli style banana phone graphic. I just had to.)

Gavin is at ABA therapy as I type this – it’s day 3. He is doing well and very happy to be there. Yesterday he ate lunch with them and I hope he will eat today as well. Then we are off to speech therapy, then home for a nap. I hope he has enough energy for all of this today! We’ll see.

Since I am not very spunky today, I managed to do only one thing so far in my constant world of research and that thing was: sulforaphane. I finally responded to a team member at Nutramax, the makers of Avmacol. They replied back to my initial email weeks ago but one thing led to another and I didn’t reply or order the supplement. Today I ordered two bottles of Avmacol and updated them, explaining how I really hope it works for us. The person already emailed me and told me to let him know how it goes. I am so floored by the fast response that I am not even sure what to say. It all seems too good to be true. Avmacol is supposed to be the best way to get sulforaphane working in the body and the people who work there seem to be pretty amazing people so far.

So about Avmacol: it’s a combination of sulforaphane and myrosinase which “ignites” the benefits of sulforaphane right there in the digestive system. I gave Gavin some other sulforaphane supplements before, but not on a regular basis, so I don’t know what the outcome was. But then I kept reading about it and decided that if I do this again I’d make sure to get the best formulation of sulforaphane possible. That’s when I heard about Avmacol and the way it is different than other supplements out there of the same type. It’s even the chosen tablet for clinical trials for sulforaphane.

I’ll update this post after we have been taking it for at least four weeks. The two bottles will arrive soon so hopefully I will see positive changes in Gavin shortly after his fourth birthday.

I’m leaving some details about two clinical trials with sulforaphane below, in case someone stumbles across this post and wants more details right away. There was a study completed in 2014 which showed positive outcomes in males with autism who were over 13. The second study I found is apparently still going on and I have emailed the researchers to ask if they can pass any info along to me to share with you. It’s another trial that doesn’t involve anyone younger than 13, but I hope it sheds some light on the benefits so that more people can use it successfully.

Sulforaphane Clinical Study 1 – Lurie Center for Autism 2014


This study was conducted at the Lurie Center for Autism of the Massachusetts General Hospital (MGH) for Children with approval of the MGH and Johns Hopkins University Institutional Review Boards, and was registered at ClinicalTrials.gov (NCT 01474993 under Food and Drug Administration IND 113542).

“The decision to test sulforaphane to treat ASD was based on four premises. First, extensive evidence shows that sulforaphane counteracts many of the same biochemical and molecular abnormalities associated with ASD, including oxidative stress and reduced antioxidant capacity, defects in glutathione synthesis, mitochondrial dysfunction and low oxidative phosphorylation, increased lipid peroxidation, and neuroinflammation. Although it is unclear whether these anomalies are etiological or secondary manifestations, their correction often improves ASD behavior

Second, a variety of small molecules including sulforaphane can ameliorate a number of unrelated genetic disorders by activating the “stress proteome,” which regulates many of the aforementioned damaging processes. Sulforaphane, as well as hydroxyurea, phenylbutyrate, and trichostatin A, have been shown in vitro to have therapeutic potential to reestablish cellular homeostasis in a number of unrelated genetic disorders.

Third, sulforaphane is a dietary phytochemical, derived from its precursor glucosinolate glucoraphanin, that is widely consumed in cruciferous plant-rich diets, and qualifies for consideration as a food, a dietary supplement, or a drug, depending on its intended use. Sulforaphane is therefore justifiably considered to be of low toxicity, and its administration to humans is well tolerated.

Fourth, widespread anecdotal reports have suggested that fever can dramatically but temporarily ameliorate the disturbed behavior of many autistic patients. Notably, the degree of improvement (mostly in stereotypic behavior and inappropriate speech) was unrelated to the severity of fever or of autism. This study explicitly suggested that elucidation of the fever response might provide insight into the mechanisms of ASD and point to new therapeutic approaches. Fever up-regulates heat-shock proteins and related mechanisms central to multiple cellular processes in the CNS, including synaptic transmission, and may improve long-range cerebral cortical connectivity that is depressed in ASD. Sulforaphane also up-regulates expression of the heat-shock response.

Participants, all male, were 13–27 y old at enrollment (median: 17 y). A history of behavioral improvements with fever was given by a large majority (32 of 40; 80%) of participants.

At 18 wk there was a 34% reduction in ABC and a 17% reduction in SRS scores,

Significantly greater improvement was observed among participants randomized to sulforaphane at 4, 10, and 18 wk for irritability, lethargy, stereotypy, and hyperactivity subscales of the ABC, and in awareness, communication, motivation, and mannerism subscales of SRS. After stopping sulforaphane treatment, both ABC and SRS subscores tended to revert toward baseline.

Our clinical impressions during the study, although blind to group assignment, were that 13 of the 40 participants improved noticeably with respect to sociability and behavior, usually observable by 4 wk; all were receiving sulforaphane. In queries to families and caregivers, before unblinding, 17 of 26 whose sons had taken sulforaphane reported gradual changes within the first month of treatment and correctly surmised their group assignment, whereas the remaining 9 on sulforaphane—and all but 1 of 14 who received placebo—were not improved, and believed that their sons had not received sulforaphane. Positive responses to sulforaphane were spontaneously reported by parents and caretakers, who commented (before disclosure of treatment category) on improved social responsiveness, behavioral compliance, and calmness in the subjects with ASD who were taking the active compound.”

Sulforaphane Clinical Study 2 -Carolina Institute for Developmental Disabilities, University of North Carolina School of Medicine

A second study from 2017 and still ongoing with Avmacol brand of sulforaphane:  https://clinicaltrials.gov/ct2/show/NCT02909959

I am going to try to get information about this trial to see the results. From the link above, it shows the way they will measure the outcomes but I don’t see any results  just yet.

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