Thank you.

Well I just re-read what I wrote below, and for the love of God, I’m certainly making up for the last month of silence.  I apologize in advance for this lengthy post.    

I want to start by making one point very clear:  we were right, the behavior we saw over the prior 6 months last year really was not Coleman.  He could no more help his behavior than a drunk could help slurring his words. 

We had already treated Coleman for internal inflammation as a result of the active Lyme, EBV, and food allergies over the past two years.  And with good success – he was thriving.  But his sudden behavior change this past year prompted new testing which revealed that the EBV virus was surging ahead yet again.  The results were higher than ever.  The doctor ran another panel of tests that measured circulating levels of four autoantibodies in Coleman that were directed against specific neuronal antigens.  If elevated, the results would indicate that the inflammation had moved to Coleman’s brain and would certainly help explain the extraordinary slip in behavior.  All four of Coleman’s results were highly elevated.    

Autoimmune encephalitis is more common than you might think.  Although there has historically been much debate about it, recent discoveries and advances in science have provided much needed credibility to the condition.  The symptoms of brain inflammation look remarkably familiar to what many children on the spectrum experience:  sudden OCD, aggression, sensory overload, impaired motor function and more.  Books like Brain on Fire (Susannah Cahalan) and The Neuroscientist Who Lost Her Mind (Barbara Lipska) detail vivid accounts of descents into temporary madness as a result of brain inflammation.   Originally, research indicated Strep as the cause of the neuro inflammation but more recent research and discoveries reveal that many chronic infections (Lyme, EBV) left untreated can also cause the same reaction.  Furthermore, we learn more everyday about the gut/brain connection and how our compromised food chain is implicated in the process.  Many specialists believe now that brain inflammation may be a significant factor in autism, schizophrenia and Alzheimer Disease.  And wider recognition of the condition is evidenced by the recent growth in treatment centers for PANS (Pediatric Autoimmune Neuroencephalitis) across the country (including Mass General).  So we are making progress in this area.  Slowly but surely.  I am hopeful that we are nearing a time when the medical community will help to form more cohesive and consistent diagnoses and treatment options for children and adults suffering from autism as well as other disorders. 

And I hope that time comes soon - this nation’s pandemic isn’t going anywhere.  My stories are every other autism family’s stories.  We are everywhere.  Last week the CDC released new figures – 1 in 59 children has autism, up from the 2016 figure of 1 in 68.  As if that isn’t staggering enough, you should know that the data is 12 years old and is not a national sample.  Briefly, the CDC collects data on 8 year old children from about 11 different states who were diagnosed with autism.  They analyze the data over 4 years and then issue the report.  In other words, this year’s data (2018 release) was collected in 2014 and is based on kids born in 2006.  It does not consider any children born since 2006.   Need I remind you that it’s now 2018?  But the CDC has another branch, The National Center for Health Statistics, which issues another report called the National Health Interview Survey.  This report is nationally representative survey collected over a 2 year period which gives a more immediate look at autism rates.  That report, issued in November 2017 and based on data collected from 2014-2016, revealed an autism rate of 1 in 36.  And for boys the rate was 1 in 28.   Let that sink in for just a minute. Think about what our adult population is going to look like in 20 years?  At what point do the alarm bells sound?  The press barely covered either release, and those that did largely regurgitated the same bullshit mantra promoted by the CDC that proposes broader definitions of Autism and better efforts in diagnosis have driven the increase.  Really?  Where are all the autistic adults today then?  Dr.  Stephanie Seneff, a research scientist from MIT has made the dire prediction that by 2025, one in two children will be autistic.”  ONE IN TWO.  Do you think alarms will sound then?  At what rate do we move from passive acceptance to complete outrage?  God help our children and their children.  

As for Coleman, we are grateful we have found a doctor that is keen on helping children affected with autism.  And we are following a plan, treating Coleman with strong immune builders and anti-inflammatories.  And knock on wood it seems to be working.  He is laughing again, watching his shows again, and so, so much happier.  It’s like he shed that nasty layer that had enveloped him for the last six months.  And the improvements are across the board - school is seeing the same thing and they are as thrilled as we are.   Of course, we have many new bad habits he picked up during this regression that we’ll need to address but we are on it.

We are also taking this rebound in health as an opportunity to make some pretty drastic changes for Coleman.  We have hired a behaviorist to come to the house 3 days each week to move Coleman off of the computer and to learn to utilize his time more productively and to generalize everyday living skills.  We have enrolled him in weekly speech therapy to help him learn how to effectively communicate his needs, building on his functional communication goals in his IEP.  We have purchased training equipment similar to what he uses in gymnastic class to continue to build on his physical strength.  And we upped his bicycle-riding game this year with a bigger and better new bike.  This August, we are enrolled in a program that teaches children to independently ride a two-wheeler.  I can hardly wait.  As always, we continue to seek out social opportunities for Coleman.  Trust me when I say they are sporadic.  But thanks to South Shore SNAP (Special Needs Athletic Partnership), Coleman attended his first ever boxing class last week.  Offered at the Hingham Boxygen location, the program is fun and the team up there is absolutely top notch.  After initial trepidation, Coleman laughed and really enjoyed the first class (although he would not put on the gloves, so we are working on that.)  And we have SNAP baseball and soccer also coming up.  Coleman continues to need guidance in these activities but with every new chance he grows a little more.        

Perhaps most importantly, and what I am most excited about, is the new “Buddy” teams we have working with Coleman.  Desperate for social involvement, Coleman asks every day “what can we do today?”  When I remind him it’s a school day, he simply moves on to “what can we do after school?”   I struggle to come up with things, and weekends are the absolute worst.  “What should we do today?” he asks the moment he wakes up.  I try to sound excited and say things like “How about we go to the park!?” or “How about we play ball?!!” and he simply looks away for a moment, and then asks “Maybe you can call your friends?”   He means his friends, except Good lord, he doesn’t have any.  I try to reach out to some folks nearby who have children that know Coleman but it is difficult as I don’t want to pressure them and I understand kids have busy schedules.  So to pacify Coleman I often resort to lying.  I say “Ok, I can try.” And I pick up my cell and pretend to dial:  “Oh hi! It’s Coleman’s mom.  Can Johnny come over to play today?  No?  Oh okay maybe another time” I script this fake call out loud so he can hear and when I ‘hang up’ he stares at me.  “Maybe they can come tomorrow,” I offer optimistically.  He walks away sad, saying unenthusiastically “maybe we can go to the park.”  It’s like ground-hog heartache every Saturday.  So I put up a post on our town’s Facebook page looking to pay a teenage boy to be a ‘buddy’ to my boy for one hour a week on Saturdays.  And if you’re wondering if there are still good people left in this world, I can attest that there are because I was overwhelmed with responses.  Tons of boys in the high school responded – kids on various sports teams, kids involved in SNAP or Best Buddies, or kids who weren’t involved but just cared:  they all offered to come and play with Coleman.  And I had even more calls from parents saying their younger child would love to be a pal for Coleman.   I was so moved, so elated.  I actually considered for a moment booking them all!  His day would be neatly packed from 10am to 6pm both Saturday and Sunday with kids coming every hour to play.  Seriously, I’m not joking when I say I mentally played out that option several times.  But I know also that while Coleman craves this social interaction, he is not really able to effectively participate in it yet.  He doesn’t have the correct language skills or play skills to truly play – which is precisely the reason that having someone to play with is so important.  So against my “Go Big or Go Home” attitude, I opted to go slow and ultimately hired a neighborhood high school boy who used to be a friend of Emma’s.  He is honestly amazing with Coleman.  It’s taking some time, but Coleman is warming up to him and they are starting to have a nice time together.  We also have two boys that are true peers of Coleman – they are his age and one of them is a neighbor as well – that are coming over weekly or as often as their schedule allows.  These two boys are old souls - kind and gentle and loving.  I couldn’t have hand-picked a better duo to spend time with my boy.  And Coleman loves them.  Finally, I’m doing my best to take advantage of on-the-moment offers to play for Coleman.  In the past I would have shied away from this – knowing it takes Coleman some time to warm up to kids, and knowing it takes some time for kids to understand Coleman - but I promised myself for Coleman that I will make every effort.  So when a friend waved at me in a parking lot on Saturday, stopped her car, rolled down the window and asked “Is Coleman home this afternoon?  My boys are free” I was like damn right he is.  And, although there was a bit of chaos at the start (Emma’s friends were leaving while the boys were showing up and Coleman doesn’t do well with that kind of transition) and Coleman initially yelled “GOODBYE BOYS!  IT’S TIME FOR THE BOYS TO GO HOME!”, he managed to recover and the rest of the hour went really well.  All of these social experiences I believe are truly good for both parties, but they are like a drug to Coleman – they lift him for hours after the actual interaction.   We’re feeling very blessed to live in a community where so many people care and are willing to help.

   

Well, I’m finally done.  How was that for a let-me-rant-on-and-make-up-for-lost-time kind of post?  Are you still here?  J   Thank you for reading again today, and each of the last five years.  You all help me to be a better person.   I’ll close finally by adding a shout-out to my fellow autism moms.  I heard from so many of you after my last post.  Thank you all, I feel you.  We are in this together.  Hold onto hope, it’s a beautiful thing.

See you next April.

Birds Nest Catching

Regression

Regression

The next big step for us in terms of helping Coleman was to go Gluten Free.  Gluten Free/Casein Free to be exact, which meant removing all gluten and all milk products.  It is reported that a great number of kids with autism improve significantly by going GF/CF.   And please don’t throw that lame study at me that spread like wildfire across every major newspaper and media outlet last September:  “…gluten free diet doesn’t improve autism symptoms…”  Please.  They had 14 kids in their ‘study’.  14 kids.  How is that scientifically significant?   I could do a larger study just by using kids I know.  And they removed any child from the study that had GI issues.  Wait, what?  That is precisely the issue.  And the test lasted a whopping 4 weeks.  It takes 3 months to 1 year for Gluten to clear from the body so 4 weeks?  Really?   That study single-handedly undermined innumerable kids with autism across the country.  Many parents will now opt to not even try, and that’s super discouraging since most biomed doctors put the percentage of kids that improve after giving up gluten at around 60%.  I’m not saying GF works for all kids.  It doesn’t.  But if you have a child with autism, you sure as hell have to give it a go.  60% is hard to ignore.

That said, I wasn’t looking forward to making the change.  Dietary changes are formidable on neuro-typical kids, let alone kids with autism.  I remember the dread I felt when Emma was going GF.  The ‘This Is Going To Be Hell’ mindset.  Surprisingly, for Emma, it wasn’t.  It took a little trial and error to weed out the lousy products and find acceptable replacements, but after only a couple of weeks, we had the shopping list down.  And Emma herself could feel the difference in just a few days so for her, that was enough to rid herself of gluten forever.  But with Coleman, I knew it was a different ballgame entirely.  With him, that ‘This is Going to Be Hell’ mindset was spot on. 

Given Coleman’s history with the feeding tube and all the work it took to get him to eat orally, I was nervous about making changes and purposely went slowly.  Coleman is self-limiting in terms of foods, and foods even that we used to have, we no longer have.  He refuses to eat them or gags when you try to offer them.  It’s a frustrating reality, and is very common among kids with autism.  Coleman currently has four primary meals:  Waffles, Chicken Parm (with grilled chicken), Chicken Broccoli and Ziti (in alfredo sauce), and Mac n’ Cheese (pasta with milk and a slice of American cheese if you can stomach that).  In other words, Coleman eats Gluten and Casein almost exclusively.  He will nibble (and I mean seriously baby-style bites) of some fruit and carrots, but largely his diet is the four foods above.  The general population is probably aghast at this, but I know how long we worked to even get 4 foods, and I know so many other Autism families have the exact same issues.  Our transition to GF is one step in a much larger plan to widen Coleman’s eating repertoire. 

So, I decided to start with gluten first, and attack casein second.  Gluten would be easier to change, I imagined, since I was having a hellish time trying to find a dairy free alfredo sauce that didn’t taste like cardboard.  And with Gluten, I really had to just change pasta and waffles.  Through our experience with Emma, we had already found a delicious GF pasta that I was sure we could use as a substitute.  So I started by using one tablespoon of GF pasta, and about 5-6 tablespoons of regular pasta.  He never noticed.  We kept that up for a few days and then added 2 tablespoons for a few days.  And then half and half.    At the same time, we were trying GF waffles every day, without success.  I would hand the half-waffle to him (he eats them dry, without syrup) and he would examine it closely and then yell “NO NOT THIS ONE!!” and give it back to me.  No amount of lying to him that it was the same, or trying to fool him would make him eat it.  I tried to wait him out on a few occasions, but he was stubborn, and as a result, he went to school without breakfast for several days.  We tried brand after brand.  I bought three separate waffle irons, all trying to recreate a frozen store bought waffle, but he would have no part of any of them.  Finally, on a last ditch effort, I found a new organic GF version at Whole Foods which we hadn’t yet tried.  I brought it home on a Sunday night, toasted it, and gave it to him.  For the first time, he didn’t hand it right back to me.  As Emma and I spied at him inconspicuously from the counter, he took a small bite.  And then another.  WINNER WINNER CHICKEN DINNER, we found a waffle folks!!  And so Billy went right back up to Whole Foods, bought the remaining 6 boxes they had left in the freezer and ordered a case to be picked up later.  And that Sunday was the last day of Gluten for my boy.  Starting the next morning, we pulled the rest of the Gluten pasta, switched to the new waffles, and we were Gluten Free.  Coleman definitely ate less, but he was eating.  By the end of the week, we were in the throes of Gluten Withdrawal. 

Coleman was a nightmare.  Yelling, screaming, and miserable.  It was a stressful week, but we stayed strong and held ground, expecting to come out of it each day.  But the second week was no better, and school reports began to sound like the early days:  “difficult day, very hard to transition” and “unhappy most of the day”.  By the middle of the third week, I was sure something was wrong. He had regressed back to where we began, even starting to hit again, which he hadn’t done in a very long time.  It seemed, in fact, things were even worse than when we began.  Coleman was scripting more than ever, the OCD was back with a vengeance, and he developed a new habit of getting close up to the wall and scripting as if he was talking to the wall.  He even seemed to have developed a new tic of head nodding.  And to top it off, he was repeating every single word you said.  He said the word “Beach ball” continuously one day for the entire ride to school.  That’s about 2,000 beach balls.  The prior three glorious months seemed to have slipped right through our fingers in just a few short weeks. 

For the first time since we began the biomed, I was worried.  I was ok with not making progress, with not making immediate gains, but I did not sign up for a regression to a place worse than where we started.  I was super nervous, and Coleman’s anxiety was through the roof.  As a result, the entire house was stressed.  I called Bock’s office and left a message.  I didn’t hear back and the next day, out of fear, I stopped all the supplements.  I didn’t think it had anything to do with them, especially since we had been taking them for months by this point, but I just didn’t know what else to do.  I had read a lot about food related regressions, but this seemed worse.  And it had gone on longer than a week.  Bock’s office called back on Thursday, and ordered bloodwork, which we did that Friday.  We already had a previously scheduled appointment with Bock the following week, so we hunkered down and waited for the results and the visit.

On a side note, that visit was actually last Friday so we are practically in real time now!  How’s that for a quick year recap?!  J

We made the trek to upstate New York as part of our April school vacation plans.  You can imagine how happy the girls were about riding 4 hours to a doctor appointment for Coleman.  You can further imagine their mood after we spent $375 to go to Six Flags, and the only ride we went on was the kiddie roller coaster.  Coleman was thrilled, but for the girls it was a total bust.  Don’t even consider going unless you are going to pony up the extra $100 per person for the fast pass thingy, which we didn’t know about until after we has waited in line to get in the park for 50 minutes, only to arrive at the 2.5 hour line for the real roller coaster.  Who waits for that?  Not us.  So all in all, the girls really took one for the team on this trip, but at least we shared some good laughs along the way.  

The appointment with Bock went well.  As we talked about Coleman’s behavior, Bock felt strongly it was a viral flare up, particularly given the OCD and new tics.  In his experience, gluten withdrawal rarely lasted beyond a week.   He ordered a repeat Lyme test to see what kind of progress we had made against the strains (apparently there are several different strains, each treated with a different antibiotic).  In the meantime, he asked us to re-start the original antibiotic we has been on for 30 days at the start.  In addition, because the labs were not yet back from the prior Friday’s bloodwork, he prescribed an antiviral based on his suspicion that he was having some kind of viral issue.

We headed back home, relieved that Coleman’s issues were not a result of the supplements.  It was a long ride back, particularly because it was pouring.  And between the loud, pounding rain on the roof, the thunder, and Coleman’s non-stop yelling for us to make the rain stop, it’s no wonder we didn’t drive off the road.  Intentionally. 

On Monday, I was able to log onto the Children’s Hospital portal and view Coleman’s lab results.  Bock was right.  The Epstein Barr virus was through the roof.  The range for testing is:

17.9  or less:  negative
18.0 – 21.9 :  Indeterminate
22.0 or greater:  Detected.
Coleman’s level:    >750.

So I could spend an entire day writing here what I have learned about EBV over the last 48 hours, and it still wouldn’t cover it.  This is one of those chronic, debilitating viruses that is often misunderstood.  It’s estimated that roughly 95% of all adults have antibodies against this virus, indicating that they were infected at some point in their lives.  For many people, the symptoms are mild and go unnoticed.  For some, there is a sore throat, tender lymph nodes and slight fever, along with fatigue.  This is the most common form of the virus, hitting teenagers as mono.  When severe, you can get hit with about six weeks of fatigue and an enlarged spleen.  Like most infections, the body makes antibodies against the virus to destroy it and prevent its return.  However, in some cases, particularly when the immune system is weak and not working properly (like most kids with autism) the virus takes up residence in your organs and gets continually reactivated, causing a chronic inflammatory response.  In addition, those organs themselves begin to be impacted.  Worse still, some kids, through an autoimmune issue, will make not make antibodies to the virus, but instead make antibodies to the protective myelin sheath covering nerves.  Their own immune system is gnawing away at their insulation of nerves. 

EBV has been associated with the development of serious medical issues including neurological conditions, GI problems, Guillain- Barre, Hodgkin Lymphoma, and autoimmune diseases.  I even saw research that said T-cell cancers have been linked to EBV, which I find fascinating since Coleman had T-cell Leukemia. 

There is a boatload that I don’t know about EBV. I’m working on it.    

What I do know is this:   Coleman is acting recently like he had acted the previous 3 or 4 years: difficult, angry, aggressive.  And all that time, we thought that was just part of being autistic.  And then we saw Dr. Bock who figured out Coleman had several chronic infections, including Lyme and EBV and placed him on 30 days of an antibiotic.  And it was then that we saw Coleman as he really is – a happy, sweet, calm little boy that we so adore. And he stayed that was for a solid 3 months.  Until this flare up. 

What I hate most about this is the realization that for years, Coleman was in pain.  I read that chronic viruses make you feel you were hit by a truck.  The way you feel on the first day of a bad head cold, when your head hurts, your brain is foggy, your body is fatigued, and all you want to do is lie down.  I hate to think that my boy felt that way for years, and that we didn’t know.  I hate to think that we assumed it was all just part of being autistic. 

Yet, this realization is also one the best things that has happened to us.   Because now we know.  And we can help.  Figuring out that piece of the very large puzzle was a massive win for Coleman.

Coleman still has autism – there is no magic bullet here.  But as we treat these underlying conditions, we alleviate pain and inflammation, and give Coleman the chance to be present, to be available for learning.  Only then will he be able to show us what he can do, just like he did a few months ago.  Those days are coming again.  Just you wait.

Our N.Y. Road Trip Pit Stop

Books To Read

Reading

After Bock’s book, I started to read again.  I forgot how much I loved to read.

I searched online for books and articles, reading and ordering as I went.  I had read about three or four when I remembered about another book.  About two years ago, we were invited to a neighbor’s house for a football party.  We brought Coleman, which was risky since he wasn’t very familiar with this house and of course he wasn’t interested in football.  He stayed in the kitchen watching his DVD, and I stood at the threshold between the kitchen and the family room, loosely watching the game beside him.  My neighbor’s father was there too.  He was a retired doctor, a smart Harvard grad, kind and soft spoken.  He came out to the kitchen and asked about Coleman.  When I told him he was autistic, he quietly nodded.  He didn’t say much, but he watched Coleman for a few minutes then went back in to watch the game.  The next day, my friend swung by with a book.  “My Dad wanted you to have this.  He thought you might find it interesting.”   The book was called The Brain that Changes Itself by Norman Doidge.  I thanked her and after she left I read the back cover.  It seemed a little out there, about neuroscience and brain plasticity, and I wondered why her father thought I would like it.  I skimmed it but didn’t read it.  But now, as I started to learn a little about the brain and autism, I thought about that book.  I went to my room, took the book from the bookshelf, dusted it off, and read it.  Holy Cow, that book was amazing.  Absolutely the most fascinating thing I have read in a long time.  It was not based on autism specifically.  Rather, the premise of the book was that the brain can heal, that conditions once thought of as permanent can be changed, that neuroplasticity (the brains ability to adapt to obstacles) is a very real science.  It provided story after story of true events where the brain overcame even the most challenging obstacles.  I finally understood why her Dad had given me the book.   It was his very gentlemanly way of telling me “There is more you can do for Coleman.  It’s not too late to help him.”   I get that now.

The more I read, the more surprised I became about how much people were actually doing to actively try and heal their children.  Parents across the Globe were actively managing their child’s autism treatment plan, from dietary changes to nutritional supplements to detox.  Parents who refused to believe nothing could be done, parents who started to wonder if food or environment played a role in their child’s condition, parents who questioned the standard response of “It’s because he has Autism” when they asked why their child had chronic constipation or fits of uncontrollable hitting or a sudden need to touch every corner in sight.  These parents laid the groundwork for the rest of us.      

I’ll say upfront that I understand too the knock on this whole approach:  that biomed doctors are just taking your hard earned money and leading you on when there is no cure, taking advantage of the single strand of hope that desperate parents will latch on to.  It’s possible I suppose.  I’m sure there are some doctors like that out there.  But there are many, many great doctors who are at the frontier of what will be the future treatment of autism:  Individualized care.  Because it is the only approach that will work.  Some of these doctors fell into this practice – they had success with one child, and word spread and soon others were lining up the door.  Some of them chose this path because of their background in biochemistry, and their own research that proved links not commonly discussed in the medical community.  And a great many more doctors practice this approach because they too had a child with autism.  They lived this life, and through their own skill, knowledge and hard work discovered an approach that worked for their own child.  And now they choose to share that learning with others.   

There exist tons of blogs and websites authored by moms that have already walked this path.  They are funny and honest and informative, and they offer a wonderful parent perspective.  There are national organizations including TACA  (Talk About Curing Autism Now) and GENERATION RESCUE for parents that provide information, resources and support for families dealing with autism.  These sites also offer a great deal of research and news.  There also exist national conferences you can attend where some of the most brilliant researchers in the field of Autism will speak about cutting edge research and promising new approaches for improved treatment.   You can often find videos of these speakers posted on the sites above, or on other online conferences.   By now, I’ve listened to many doctors and scientists speak on specific biomed topics and it’s absolutely intriguing.  I never liked science.  But now, well, it’s the most exciting part about all of this:  that the basis is so completely supported by science.  It makes so much sense.  The gut-brain connection, methylation pathways, the role of vitamins and minerals in our body, cellular function and what that really means and what it needs to work properly,  the body’s ability to detox – all of it.  It’s fascinating.   I can’t get enough of the information.  My nephew says I’ve gone rogue.  Maybe I have.  But once you figure this all out, you want like hell to share it, to help inform others.   I wish I had learned it all sooner.   

So, on that note, I thought I would list out a few books – and if you know someone who has a child with autism, you could suggest one of them.  Or, if you have an autistic child yourself, maybe you could pick one up.  I understand that all parents reach this point at different times.  I don’t think I would have been receptive to this much earlier in Coleman’s diagnosis.  I wanted to believe he would heal on his own.  I wanted to believe that it wouldn’t be that bad. I wanted to believe we would all be fine.  Clearly, I acted in exactly that manner.  Maybe some parents (me included) need to get to the really difficult, trying times before you can accept that it will not get better on its own.  Maybe some parents need more time.  But when you are ready, when you start to wonder Am I doing enough?  pick up one of these books.  It will change everything. 

I’m currently reading Autism:  Pathways to Recovery by Dr. Amy Yasko.  It’s very technical but I love it.  I wish I had gone to medical school.  J

For books I’ve already read, I’ll put here first the Bock book which I have already discussed at length, as well as the book noted above.  Both are great reads. 

http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494512/ref=sr_1_1?ie=UTF8&qid=1461505525&sr=8-1&keywords=kenneth+bock

http://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100/ref=sr_1_1?ie=UTF8&qid=1461509492&sr=8-1&keywords=norman+doidge+the+brain+that+changes+itself

The next book I would recommend most is Unraveling the Mystery of Autism and Persuasive Development Disorder by Karyn Seroussi.  This book was ahead of its time, written by a Mom who was one of the early learners about food sensitivities and how it can impactful it can be in Autism.  Karyn consulted medical papers, researched via the internet, and networked with other parents, finally tracing the onset of her child’s autism to an immune system breakdown.    It read like a diary and was short but super interesting.  An excellent first read for a parent starting this journey. 

http://www.amazon.com/Unraveling-Mystery-Pervasive-Developmental-Disorder/dp/0767907981/ref=sr_1_sc_1?ie=UTF8&qid=1461503084&sr=8-1-spell&keywords=unravleing+the+mysteryof+autism

Up next is Cure Your Child With Food by Kelly Dorfman.  Another fascinating book – and not just for kids with autism.  Kelly Dorfman is a nutritionist who does an excellent job connecting hidden links between nutrition and childhood ailments.  It was here that we figured out Emma had a gluten sensitivity.  Emma had been having severe headaches and stomach aches for nearly a year, back and forth to doctors, without any success.  After I read this book, and learned a bit about Gluten Intolerance (vs. Celiac) we decided to trial a week without gluten.  For the first time in more than a year, there were no headaches. She hasn’t gone back to gluten since, and she is infinitely better.   And for Coleman, the book linked a possible milk intolerance for us.  According to Dorfman, if your child is having difficulty growing, or has occasional blood in their stool, before even going for a bone scan, you should try eliminating milk (casein).  Interesting since, for years, Coleman has had traces of blood in his stool.  He is tiny for his age, not even on the growth charts, and at 11 ½ years old, and 60 lbs, he is just now moving up from his size 5-6 pants to a solid size 7.  He has been to an endocrinologist several times for bone scans and growth assessments to try and determine why he isn’t growing, without any success.  So you can imagine my surprise when I read about the milk sensitivity in this book.  No one ever mentioned that before.    

http://www.amazon.com/Cure-Your-Child-Food-Connection/dp/0761175830/ref=sr_1_1?ie=UTF8&qid=1461506576&sr=8-1&keywords=kelly+dorfman+Cure+Your+Child+with+Food

Another good book outlining symptoms and approaches is Healing and Preventing Autism by Jenny McCarthy and Jerry Kartzinel, MD.  You can say what you want about Jenny McCarthy but she is doing a boatload to shine the light on this topic.  And she lived it.  Her son was nonverbal, stimming, and suffered seizures.  She fought hard to bring him back, seeing top neurologist and drastically changing his diet and adding supplements.  Her son is now recovered.  She has made it her life journey to help inform other parents that there is help, there is a way to recover.  And she’s doing a pretty damn good job at it. 

http://www.amazon.com/Healing-Preventing-Autism-Complete-Guide/dp/0452295920/ref=sr_1_1?ie=UTF8&qid=1461507006&sr=8-1&keywords=Healing+an+preventing+autism+jenny+mccarthy

Relating to the Gut/Brain connection, and the old adage, you are what you eat, check out Brain Maker by David Permutter, MD.  You’ll start to think twice about what you put into your body.  Frankly, knowing what I do now, and knowing what I have consumed in my life and what I have not, it’s somewhat of a miracle that I am still living. J  

http://www.amazon.com/Brain-Maker-Microbes-Protect-Brain%C2%96/dp/0316380105/ref=sr_1_1?ie=UTF8&qid=1461506681&sr=8-1&keywords=brain+maker

Some others – in no particular order are:

Disconnected Kids, by Dr. Robert Melillo.

http://www.amazon.com/Disconnected-Kids-Groundbreaking-Neurological-Disorders/dp/0399535608/ref=sr_1_1?ie=UTF8&qid=1461510102&sr=8-1&keywords=Disconnected+Kids

Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. 

http://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028/ref=sr_1_1?s=books&ie=UTF8&qid=1461510173&sr=1-1&keywords=gut+and+psychology+syndrome

Children with Starving Brains by Jaquelyn McCandless, MD.

http://www.amazon.com/Children-Starving-Brains-Treatment-Spectrum/dp/1883647177/ref=sr_1_1?s=books&ie=UTF8&qid=1461510232&sr=1-1&keywords=Children+with+starving+brains

There are lots more, but this should be a good start!!   Happy Reading!

The Fall Setback

The Fall Setback

We had a wonderful celebration yesterday for the first anniversary of my mom’s passing.  Several of her friends came, along with the entire crazy family.  We attended an anniversary mass, and then had everyone back here afterwards.  It was a great day and evening, and judging from the number of sibling hangovers today, there was no shortage on fun.  My mother would have expected nothing less.  So the timing of this along with where we are in retelling our past year’s events with Coleman is perfect. 

After our appointment with Bock in late September, life went on as we eagerly awaited the arrival of the prescriptions and supplements.  Coleman celebrated his 11^th birthday, and for the first time, we had a ‘friend’ birthday party for him.  We don’t usually do this because, well honestly, he doesn’t like birthdays.  He doesn’t like the Happy Birthday song, he doesn’t eat cake or ice cream, he doesn’t have ‘friends’, and he doesn’t like to open presents.  So pretty much birthdays aren’t his thing.   But this year, we had Kidzone in our bag of tricks, and we knew how much he loved that place.  We invited a very small group of kids, primarily neighbors, to join us at Kidzone for play and then had them back to our house for cake and ice cream. 

All I can say is that we are very, very blessed to have these families in our life, let alone our neighborhood.    Best birthday celebration we’ve ever had, hands down.  Coleman didn’t stop smiling the entire time there, and he ran around with those kids for a solid hour and a half – without any involvement from me!  He’d run up to me every so often with some comment like “You go on the slide?” and I would act all excited for him and say “Oh yeah! Have fun!!!” and off he would run to the slide with the quartet of kids.  God, they were good to him.  Asking him questions, following where he led, and even, on a very close call, holding him up when he was centimeters from falling back down the inflatable slide stairs.  There wasn’t a lot of conversation between them, and I’m sure much of what he did say they didn’t understand.  But they never said a word, never complained to their parents, never asked when it was time to go.  They laughed and smiled, and coaxed him with “Where should we go next Coleman?”  They were like mini adults, taking his hand, helping him up the ladders, down the slides, and through the bumpy houses.  It was an outstanding 90 minutes. 

A few days later the package of supplements finally came and we officially began our road to recovery.  As luck would have it, we hit a bump only three weeks in.  Coleman stopped drinking his juice.   And then he stopped eating too.  He wasn’t getting much yet in terms of supplements – we were supposed to add a new one in every 2-3 days, leaving just enough time between each to see if there was any reaction.  But I was cautious – I didn’t want to rush into anything, so I was doing 5 days before adding each one in.  So I felt pretty sure it wasn’t the supplements.  Still, since they were being mixed in his juice, I backed off to see if he would start to drink again.  He didn’t and remained irritable and still refused to eat anything.  By the end of the second day, I was sure it was strep.  This was exactly how he had presented in the past.  We went in for a strep test, and sure enough, it came back positive.  Due to a very serious strep infection the prior year that involved several trips to the ER and nearly led to a much bigger throat infection (all because he did not respond to a 10 days dose of Amoxicillin) we were prescribed Cephalexin and went on our merry way.  Only not so merry.  He vomited for 60 hours before we could even get the antibiotic into him.  After 5 days he ate his first bite of food.  2 days later he began pooping blood.  A lot of it.   We were terrified.  We went back to the doctor and provided stool samples for testing, but had to wait another week for results.  The heavy blood continued the entire week.  He was so sickly, laying on the couch like he hadn’t since the Leukemia days.   The bacterial tests all came back negative, but still the blood continued.  It was extraordinarily frustrating as our pediatrician didn’t seem very concerned.  She felt it was possibly a reaction to the Cephalexin and that we’d just have to let it run its course.  Coleman had been out of school for more than 2 weeks.   We were begging time at work, slipping in late, leaving early, trying to cover the hours he was at home along side Sue, who thank God was able to come most of the days.  After another weekend with bright red stools and 8x/day diarrhea, we went against our doctor’s suggestion and called Children’s Emergency and spoke with the GI doctor on call.  I needed to be seen, I said.  I cannot wait any longer.  I was a wreck and thought something was very seriously wrong with my boy.  We went in on that Monday morning, 17 days after it began.  And as I held Coleman’s hand walking through the parking lot into the hospital, he stopped.  He looked up to his right side, smiled and then looked back toward me.  “Where is nana?” he asked?  It was the first time he had even mentioned her name in the 7 months since she had passed.   He looked around like she was walking with us. “Where is nana?” he asked again.  “Can we see her?” he continued, still smiling.  Honest to God.  It was as if she was there, whispering to him.  It was the most comforting sign yet.   I know it sounds nutty, but I am absolutely sure that he could see her.  “I think she’s right here with us buddy” I said.   He just smiled and kept walking.  I knew then that we were good.  No matter what happened, she had his back.   

That very afternoon things improved.  No joke.  And the next day, he was 100% back to himself.  No blood, no diarrhea.  And I thought of my mom, pictured her smugly nodding her head, so thrilled she is able to help like this:  “See what I can do from here?   You’re welcome.”

So finally healthy again, we started again where we had left off in the Bock plan.  It was the end of November, and the weather was starting to turn colder.  Hopefully by the spring, I thought, we’ll be able to see some changes.  Turns out, it would be much sooner than that. 

The Results

The Results

We had our follow up with Bock as scheduled several weeks later.  Turns out there was quite a bit not working properly in our little man.

For starters, he tested positive for Lyme disease.  I have since learned a bit about Lyme, and in particular the testing.  The CDC (you know how I feel about this organization) currently recommends a two tier testing when Lyme is suspected:  first an ELISA to screen for the disease, and then if positive, to confirm with the Western Blot.  The first problem is that the ELISA screening is often done too early:  during the first four to six weeks of Lyme infection, most people have not yet developed the antibody response that the ELISA test measures.  The other problem is that even later in testing, the test is still extremely insensitive, and fails to identify patients with Lyme 54% of the time!  Even the College of American Pathologists found that ELISA tests do not have adequate sensitivity to be used for screening.  So why are we still using it?  Why the lovely CDC recommendation of course.  So now you know.  If you suspect Lyme in your children (if you find a tick on them, particularly if the tic is engorged, or you see the red rash afterwards), demand the Western Blot test. 

He also tested positive for Epstein Barr, the same virus that causes Mono.  And Coxsackie virus.  In addition, he had more the two times the normal level of yeast in his system.  He was significantly low in several vitamins including B, D and A.  He had low sulphation and was quite low in glutathione (body’s chief detox agent).  He had abnormal gut bacteria, inflammation, and was on the upper limit for metabolites in his urine (leaky gut).  He also tested positive for Folate Receptor antibodies, indicating a lack of cerebral folate (CFD).  Finally, to our surprise, we found out he was allergic to peanuts and soy.  Jeeeesh.  Billy and I felt terrible.  How badly must have out little man have been feeling?  We had no way of knowing.

So all that bad news was also the good news because it meant there was a lot that could be done.   We started immediately on an antibiotic to combat the Lyme and the other chronic viruses.  “This may very well help with the OCD as well” Bock told us.  For a lot of kids, Lyme disease coincides with sudden onset OCD.  And the timing would have been right for Coleman – his OCS started in the summer when tick season is high. 

We also started on Nystatin for the yeast.  I knew that he would be positive for this.  Yeast is a fungus and it is believed when there is an overgrowth, children can have fog-like, low energy symptoms.  Coleman is very much like this – if he is doing almost anything (besides watching his shows, during which he is quite lively) he is the slowest human being you have ever seen.  I had been secretly hoping this would be positive – only so that maybe with treatment, some of Coleman’s spacey-ness would lift. 

We also started to address the Cerebral Folate issue.  Folate is critical in the replication of new red blood cells, particularly early in life when cells are growing quickly. Due to the blood/brain barrier, for folate to enter the CNS (Central Nervous System), it must be carried across by Folate Receptors.  Folate binds to the Folate Receptor on one side of the blood vessel, and is released on the other side, into the CNS.  The Folate Receptor then is recycled to go back and pick up more Folate.  However, in some kids (a high percentage of kids with autism), antibodies bind themselves to the Folate Receptors, causing them to become dysfunctional, and this starving the CNS of the critical folate.  Without folate, cells can’t grow or function properly and can lead to cell death.  Many kids who remain untreated begin having seizures.  I’m obviously simplifying this highly complicated molecular scientific process, but given the associated complications, this was an area I was hot to address.  I knew a lot of children with autism that had seizures, and for most of them, it started during puberty.  Coleman is fast approaching that point.   I was also concerned because Folate Receptor antibodies were also found to be associated with juvenile rheumatoid arthritis.  My mother had severe rheumatoid arthritis and I remember well the life-long pain associated with it.    For Coleman, we started a regimen on this involving methyl B12 and L-methylfolate.  The methyl B12 is a shot, given every 3 days.  It is the easiest of all of the treatments to give – nothing to try to get him to swallow, and the needle is tiny, and a subcutaneous injection (just into fat, right below the skin) is not painful.   He takes it easily.  The methylfolate is a capsule, given several times each day. 

In addition to all of that, we started on a slew of other supplements as well, including vitamins D and E, Biocidin, Monolaurin, Magnesium Citrate, as well as a few homeopathic remedies for constipation.  And we still had the omega oil and probiotics as well.  I was brought back to the Chemo days when we had to keep a chart of exactly what medicines Coleman had and at what times.  Today we have a chart for Coleman with dates, times and supplement notes that is more complicated than any of his chemo spreadsheets. 

The hardest part of it all is getting the supplements into Coleman, given his very tiny food repertoire.  I refuse to mess with his food, and will not mix anything in it.  I feel very much like the biggest mistake we made during the chemo days was trying to hide the medicines in his food (even though that was what the doctors told us to do.)  Maybe Coleman was unlike other kids, but the saying  “he will eat when he gets hungry.  He won’t starve”, did not apply to him.  He flat out stopped eating.  And when he lost more than half his body weight, we had to go to a feeding tube.  But by then, it was too late in terms of getting him to eat again.  He strongly associated food with bad taste and vomiting, and he wouldn’t even so much as lick anything.  For over 5 years.  So, now, after years of feeding therapy, he actually eats a few things, but only a few.  And I can’t risk losing them.  So we are treading very, very carefully over here on this stuff.  I’m using juice a lot more than I’d prefer, but it’s a placeholder for now until I can figure out a better way to get them into him.  So far, pretty good.   We’ve had a few mishaps, like figuring out that we can’t give him the supplements before school.  He doesn’t eat much early in the morning, and apparently, if taken without food, omega oils will make him vomit all over himself.  In the car.  On the highway.  In rush hour traffic.  We stopped giving him that one in the morning pretty quickly. 

I’ve joined a few Facebook groups of parents all working toward the same goal of healing their children.  That has been helpful.  And I’ve met several people locally who are actively managing the same process – it’s wonderful to have people to learn from nearby, friends to commiserate and compare notes with.  Like my friend who turned me on to all of this with her suggestion of getting the Bock book.  As for her son?  Three years in, they are, and he’s nearly fully recovered.  It can happen.  It’s happening every single day around us.  There is hope. 

The Appointment

The Appointment

The appointment crept up more quickly than I had expected and before I knew it, Billy and I and Coleman were in the car driving for our overnight trip to “see my friend” (as we told Coleman) in New York.  We had to be at his office at 9 am for lab work and Coleman couldn’t eat for 12 hours prior so we drove up the day before and tried to make it seem like an adventure.  We stopped at a rest stop once we hit New York and took the token NY picture for you all J  He was great in the car and perfect at the hotel, amazing when you consider the girls were not with us.  And in the morning, when he asked for breakfast, we acted all surprised that we didn’t have any waffles, angrily stomping around the room saying “Coleman where ARE they??!!  We better go buy some!” He bought this charade, and laughed as we headed out the door.  I explained that we had to first stop at my friends place so they could “look at his blood – it’ll be a little pinch on your arm.  Very quick”, and then we would get some waffles.  He was ok with this plan until we got there and he panicked over the blood draw.  Although it took three of us had to hold him down, once they got the needle in he was very, very patient waiting as they filled 13 vials.  Being the good, Clampett family that we are, we brought our toaster and waffles with us, so as soon as he finished, we asked to use their kitchen, plugged in the trusty lifesaver, and gave him his waffles.  And all was good.   

The appointment was at 10:30, and we didn’t leave there until after 3.  You would not believe how good Coleman was.  A total champ.  I know my mother was there that day, helping us again.  J    

It was interesting to be in front of Dr. Bock.  He was kind and quiet, and well versed in common autistic symptoms and behaviors.  He was the first doctor I had been to that I felt really understood Coleman, and that gave me a great sense of confidence.  More than that, though, I was beginning to feel hopeful. 

Bock had asked us to prepare a timeline prior to our arrival and he spent a great deal of time going over that, going through Coleman’s history, asking questions, making notes, and asking more questions.  He put several events together that we hadn’t, and after a couple of hours, he put down his pen and told us his thoughts.  He felt fairly confident he could take care of Coleman’s OCD and substantially reduce his anxiety.  He also added that he thought he could help with Coleman’s GI issues, get him off the Miralax, and hopefully help eradicate some of the fog he seemed to dwell in.  And if all of those things fell into place, the structure and teaching he was getting in school and at home would be absorbed more readily and we should see good progress.  He had only one word of caution: age.  “If Coleman was three or four years old, I would say we have a pretty good shot at recovering him.  But he’s nearly 11, and I just don’t have enough history with kids his age to predict a fully successful outcome.  But I know we can make some meaningful progress.”  To be honest, he had me at OCD improvements.  Anything above that, well that was gravy really.  Our biggest issues on a day to day basis involved the OCD and anxiety.  Even in school, the most difficult parts of Coleman’s day still consisted of breaking fast-adopted, non-productive OCD driven routines.  So Bock could have stopped right then and I was in.  And as for age, I wasn’t discouraged.  He didn’t say it wasn’t possible.  He only said he didn’t see enough kids Coleman’s age.  And I could believe that.  Although biomed has been around more than 25 years, in the last 10 years there has been an explosion of growth, due in part to the growing body of research linking gut health and food intolerances to brain health, as well as increased awareness due to the rapid expansion of social media and celebrities like Jenny McCarthy.  But for parents with older autistic children, they already tend to think “it’s too late.”  The idea of trying to change eating habits and add supplements is overwhelming in a child that is a teenager.   But for parents of younger children, the changes are less formidable – it’s certainly easier to start new habits than to try to break long term, old habits in teenage children.

So I hung onto the good news, put the ‘age’ issue on the back burner, and focused on the plan Bock was presenting.    Given Coleman’s complicated medical history, we all agreed that casting a wide net in terms of baseline testing was the way to go, so we did broad, comprehensive blood work and stool samples.  Bock provided a short-term plan until the results came in, largely aimed at starting to heal Coleman’s gut, with some basic supplements, a probiotic, and omega oils.  “Let’s see what we get in the lab work, and then we’ll formulate an action plan.”   We scheduled a follow-up for 6 weeks later, and oddly, I found myself hoping that the blood work would come back with all sorts of problems.  “What if everything comes back completely normal?” I asked.  Bock answered without hesitation.  “It’s not game-over.  There are many paths we can take.  But I don’t think that will be the case.  I think we’re going to find plenty of things to work with in his results.”  And he was right.