Nate's Ups and Downs

Nate has been so all over the place the last few weeks.  One day he is repeating words and very engaged, and the next you can’t get his attention no matter what you do- his fingers are far too fascinating.  One minute he is falling asleep on me downstairs at 6pm and before I know it he has climbed into our bed at 1am and stood staring out the window over our bed shouting for hours.  The only way to calm him is to squeeze his legs and feet for like, an hour.  This is all complicated by Jack waking up and insisting he needs me- so I run to the next room to sit with him, and Nate starts stimming again and wakes back up because I have stopped squeezing, and our puppy Darby, who is distressed if I leave the room starts yipping like a maniac.  Night time has never been our strong suit over here, and the past few nights have been nothing short of brutal. 

Seriously though, I went to pick him up today from Cisco, and he looks at me and says “go bye bye”, then says open at the door, up at the car door, etc.  It’s like last night never happened.  He is hardly humming or grinding his teeth at all tonight.  We started him back on antifungals and antibiotics last week after the  regression we saw when we stopped them several weeks ago.  He seems to be showing some “die off “ symptoms….

What is die off?

Die-off is short hand for a Herxheimer reaction (Jarisch-Herxheimer reaction).  This term was coined to describe what Karl Herxheimer saw when he administrated drugs to patients.  The reaction is thought to happen when toxins from dying pathogens (viruses, bacteria, parasites, candida, etc.) overwhelm the body’s abilities to clear them out.

This creates a toxic state in the body which produces symptoms like:

• fever
• muscle aches
• chills
• headaches
• skin rashes
• excess mucus production
• brain fog
• Increased GI problems (diarrhea, constipation, etc.)

These symptoms are often reported by many to feel very flu-like or cold-like.  Your whole body is generally sluggish and it usually feels as if your body is working harder, almost fighting something.

The changes that might cause die-off are usually:

• Switching from processed food to a real food diet (death of pathogens by starving)
• Starting or increasing probiotics dosage (death of pathogens by good soldiers)
• Starting or increasing dosage of antiparasitic, anti-yeast or antibiotic (death of pathogens by bombing)

In each of these scenarios, the change in treatment will cause substantial changes in gut flora and knock out a big portion of the bad guys.  When that happens, they release toxins that need to be excreted by the body.

http://scdlifestyle.com/2012/06/5-die-off-myths-everyone-needs-to-know-about/

The first time we did an antifungal treatment with Nate was HELL.  This is not an exaggeration.  It was November 2011.  His pediatrician put him on nystatin and warned us that his symptoms might worsen “a bit” if he truly had a yeast problem.  Fast forward 24 hours, he was banging his head on the walls repeatedly, crying continuously, would eat nothing and having nasty, grainy diarrhea.  Sorry, but if you’re going to hang on my blog, you are going to hear about poop.  It’s a huge part of my mommy life.  When these symptoms appeared (on Thanksgiving) my gut instinct was to stop giving him the nystatin.  He was so uncomfortable!  This of course is not the answer- this is one of those it gets worse and then better scenarios.  We had to wait through the symptoms (and give activated charcoal to counter them) and then we saw our first sliver of eye contact since his regression.  The issue has always been that we see improvement on the anti-yeast medications, but the minute we stop, he starts right back down the same path…

We went to see his pediatrician last Thursday to talk about this.  She is not as experienced as Dr. Brenner with these issues, however she makes herself very accessible and is learning with us.  I wanted to discuss Dr. Usman’s protocols and some others that we are reading about right now.  I am very torn trying to decide what direction to take and wanted some advice.  While I still have not decided 100% on what we are going to do, I did receive a tremendous amount of support, which I really needed.  I need reassurance that the symptoms that I keep seeing disappear and reappear are real.  Sometimes, I feel like because I want to see progress so badly, I am not able to be objective.  I rely heavily on his teachers, therapists and doctors to confirm for me that there are changes (both bad and good).  Most often, I am seeing things accurately- it just helps to be sure.  The decision we came to was to buy a little bit of time before intervening with a new protocol or new doctor.  I need to be confident in my next move- most importantly because my children are so very precious to me, but also because any move I make at this point will end up being very expensive for our family.   So we placed Nate back on the antibiotics and antifungal he was on in December when he had his huge burst of speech- he started last Friday. 

And stopped sleeping and started stimming even more on Sunday.  His teacher emailed me yesterday to say he didn’t seem to be feeling well- I am sure she wasn’t expecting me to feel vindicated when I heard this, but I did.  Die off.  Pure and simple.  He will be a mess for a week or two- we’ve been there and done that, but hopefully it will help him engage and feel better overall in the long run.  Obviously we have no plans to keep him on antibiotics and antifungals indefinitely, although you would be surprised how many kids with autism thrive in this situation.  As a friend of mine pointed out the other day (I hadn’t thought about it in a while), many kids with autism experience a decrease in symptoms with fever. 

Dec. 3, 2007 -- Children with autism appear to improve when they have a fever, according to intriguing new research that could lead to a better understanding of the disorder.

Fever was associated with less hyperactivity, improved communication, and less irritability in the study involving children with autism and related disorders.

Anecdotal reports of improvements in autism symptoms related to fever have circulated for years, but the research represents the first scientific investigation into the observed association.

While kids with autism might be expected to be calmer and less hyperactive when they have fevers, the improvement in communication and socialization seen in the study suggests that fever directly affects brain function, pediatric neurologist Andrew Zimmerman, MD, of Baltimore's Kennedy Krieger Institute, tells WebMD.

"The improvement in symptoms may mean the underlying wiring of the brain (of an autistic child) develops more normally than we have thought," he says, adding that the problem may lie with the connections within the brain responsible for sending information.

Continue reading below...

"Somehow fever appears to be changing the ability to make these connections," he says.

4 out of 5 Kids With Fever Improved

So in my mind, this is all connected (of course maybe I'm just nuts).  Fever response is there to kill off bacteria, no?  As do antibiotics?  So why are scientist focusing on how fever response affects the brain function?  Why aren’t they looking at the idea that the fever may actually be temporarily improving a chronic infection?  An infection that the body is not recognizing or trying to fight on its own?  We already know that there is a correlation between strep and autism. 

http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/

http://intramural.nimh.nih.gov/pdn/web.htm

Does it have to be strep specific?  And how does this relate to other autoimmune disorders.  Ok, sorry, won’t take it that far right now. 

So since we can’t keep him on antibiotics and fluconazole forever (and they only improve the situation, not fix it), what are we to do with this information?  Well that’s where Dr. Usman comes in.  So I am going to continue to research this direction, with several different options out there- even the pediatrician is willing to try a few other options.  In the meantime, Nate’s current symptoms are reassuring me that we are on the right track here. 

Nate- New Interventions, Side Effects, and Hope

Just wanted to give you all a quick update on Nate.  He has been on his fluconazole and flagyl for approximately 10 days now, and the mitochondrial cocktail for 5 days.  He is taking all of these like a champ.  We have gotten very lucky in that regard as he has accepted them all in his juice.

Side effects, let’s see.  Sorry squeamish readers, but he is having REALLY stinky grainy loose stool.  This is a sign that the fluconazole may be working.  He also has been extremely stimmy, which is another sign of what is called “die-off”, basically a worsening of those symptoms because of the by-products of the yeast dying.  So it’s a negative thing that hopefully will lead to improvement in the long run.

As an added bonus, Nathan has not slept through the night since, umm, last Tuesday night I think?  He is my sleeper, so this really stinks.  This could be one of two things- more die-off symptoms, or something in the mitochondrial cocktail is having some effect.  Only time will tell if that is a positive or negative effect.  It could be “awakening” of some neural connections, or it could be that one of the supplements in the cocktail is very activating to him and cause some hyper stimulation.  We need to wait it out for now, as no matter what is going on, this side effect could be a transient one.  Or, if there are a lot of other more positive effects, this side effect could be helped with melatonin and may be worth dealing with.  Either way, when he is awake at night all he wants on earth is to be “squeezed”.  Arms, legs, feet, you name it, he wants deep pressure.  He has also been more fussy- possibly lack of sleep, but he also seems to be over-stimulated more easily.  He had a rough time at his grand mom’s house yesterday- lots of crying, didn’t eat a thing, grabbed my hand and led me to the front door (time to leave mom), etc. 

Have we seen anything really good?  John and I are saying this- Nathan is having a “good week”.  His speech, not necessarily increased, but definitely more consistent.  His little attitude is alive and well.  My dear John, devoted daddy that he is, continues to try for “night night” from Nate each night.  Tonight, he was leaning over Nate while he did this, giving him some deep pressure, and Nate pushed his leg onto John’s arm, smiled behind his thumb, and instead of night night, said “kick”.  Little stinkerJ.  Also, the other day, I handed him his juice and he just very casually said “thank you”.  These are definitely positive things.  And that is as far as I am willing to think right now.

I went through another phone interview with NIH today.  It made me cry, what else is new.  They were asking developmental questions for a good 30 minutes.  How often does he nod his head yes- never, how often does he wave- never, does he use at least 5 words a day- sometimes, how often does he respond to his name- sometimes, how often does he engage in imaginary play- never.  OK, so I have to admit that the interviewer made me laugh twice.  She would ask all of these serious questions to which she received pretty depressing answers, and then would wrap up the line of questioning (and in her defense she was clearly reading from a script) with something like “do you feel that Nathan uses the typical amount of language for a child his age?”  Or the kicker “have you ever had developmental concerns about Nathan?”  Seriously?  Nah- he's just introverted?!? 

So that’s where we are for now.  Mommy is finally getting a bit of relief from a migraine that was closing in on 6 days.  Which has been happening about 3 times a month the past few months.  I got a new migraine script today from my PCP and a referral to a neurologist.  In addition, after listening to all that has been going on she insisted on writing me a prescription for Xanax (HA).  She was like “and why do you not have this?  Like every day?”  That part was a bit of a joke, but she’s right, there are times when it’s just necessary and contrary to what I would like to believe, I am not wonder woman.  Just feel a bit sorry for the kids, because this mama is so drug naïve that if I take it at bedtime, it’s going to take a lot of noise to wake me up!  Anyway, hopefully this will help.

Are The Tides Turning for Nathan!

Wow, it’s been an eventful few days on the Nathan-front.  In a good way.

I spoke with the study coordinator at NIH yesterday and it IS a drug study.  The medication involved is Aricept. 

NIH did an initial study on this medication.  The purpose of the study was to look at abnormal sleep patterns in children with autism, and then determine if the addition of Aricept can normalize sleep.  Children with autism are known to have issues with sleep, but even those who don’t wake up all night (ahem, Jack) often have abnormalities- significantly decreased periods of REM sleep.  REM sleep is thought to be crucial to normal brain development, and lack of it is thought to lead to many of the behaviors associated with autism.  So of course the hope is that if these cycles are normalized, brain development can occur and thus the symptoms will decrease.  This first study was TINY, but there have been other studies done at other institutions.

http://intramural.nimh.nih.gov/research/pubs/swedo04.pdf

Here is the study we are invited to join (or at least be screened for):

http://www.clinicaltrials.gov/show/NCT01887132

I am very interested in this.  Jack is taking memantine on study with Children’s National Medical Center.  Both of these medications are labeled for Alzheimer’s currently, and researchers have even started to study the effects of these two medications when given together (for alzheimer’s).  Initial studies are suggestive of a synergistic effect.  Meaning that when given together, the effect of each individual medication is increased.  This all sounds great, but I am concerned and still have many questions.  I have requested to speak with the physician conducting the study and am waiting for a call back.  My main concern is that this study, unlike the one Jack is participating in, has a placebo group.  And the study period is long- 18 months.  If we are unable to add other medications, or if we are told particular interventions are not allowed during this period, it would make me think twice about joining this study.  18 months of development in a young child with autism is an eternity and things can change so much in this period of time.  I am not willing to potentially sacrifice this time and have him receive no drug.  The study also includes 3 2-night sleep studies, which would mean hospital stays for me and Natey.  Not a huge deal, but I want to be able to view the results.  I hate it when tests are conducted for “research purposes” and the parents are never told what was found.  For instance, when we did the SEED study, they took Nate’s, John’s and my blood to study for genetic abnormalities.  We are not privy to these results which really just annoys the crap out of me.  If I am putting my child through these potentially uncomfortable procedures, I want to know the outcome.  Nate would have to demonstrate an abnormal REM sleep pattern in order to qualify for the study.  My first inclination was that he would not be the child of mine to study regarding this issue, but according to the research assistant, the fact that he appears to sleep well says nothing about his REM sleep.  So we shall see.

Next….

I finally obtained the results of Nate’s urine amino acid testing yesterday, and….

He has SEVERE yeast issues and also has clostridia (a bacterial infection in the gut common in children with autism).  This goes back to the whole theory of autistic children’s symptoms appearing or worsening after repeated rounds of antibiotics in infancy.  The normal gut flora is destroyed (and these kiddos have decreased ability to tolerate or compensate for this) and thus opportunistic infections occur.  Yeast is known to increase autistic symptoms.  A little more information on this:

http://www.tacanow.org/family-resources/what-is-yeast-overgrowth/

If you read the information in that link you will see that Nate demonstrates most of the behaviors associated with yeast.  I have suspected or honestly, intuitively known that this is an issue for a long time.  The doctor has even empirically treated him for yeast in the past, clearly to no avail.  So what do we do about this?  Well, we double his probiotic and we start fluconazole.  Again.  I have a feeling we will be on several courses of this.  It’s a stronger medication than nystatin.  His symptoms have temporarily improved in the past when he was on nystatin, but the minute we stop we are right back where we started.  I need to work on cutting sugar from Nate’s diet- which is extremely difficult in a child with such a picky palate.  We also will be starting Nate on flagyl for the clostridia.

As if this wasn’t enough, there are several metabolites out of whack in Nate’s testing that could indicate some other abnormalities; further testing is needed, but interestingly he has an extremely low level of CoQ10, which is something contained in the mitochondrial cocktail we are about to start.  This level and several other data points are indicative of some type of metabolic problem or mitochondrial disorder.  I need to get further information from his doctor on this, because other than the infection information, I am getting this data straight from his lab results, which his md only received when I faxed them to him yesterday.  He hasn’t had a chance to examine all the results or explain them to me.

Phew, that was a lot of information thrown out there all at once.  What is the bottom line?  To me, this all means one thing- HOPE.  We have identified some real issues, (albeit all at once and in an overwhelming fashion) issues that can be addressed.  And address them we will.  Please say some extra prayers for my sweet boy as we embark on some of these new interventions.  And say some prayers for his mama that she will make a wise decision when it comes to this new study opportunity.

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

Dusting Off and Getting Back Up...



Right before we left for the TACA conference I got an email from Nate's teacher.  It felt like I was being dealt a huge blow.  And I can't really explain why.  In her email, she said that she was trying to "plan" for next year.  And that she felt strongly that Nate would benefit greatly from, wait for it, "additional adult support."  In case you've missed it, I have been all but begging for this for Jack this entire year (and yes, we have it).  And now it's being handed to me on a silver platter for Nate.  1:1 support in the classroom.  So why does it feel so unbelievably crappy?  I have been struggling with that for the past several days.  I think I was just hoping that Nate could get through this program without needing extra help (any more than he's already getting).  Frankly, I didn't even know that extra help in a classroom that is already special education by definition was an option.  I thought that he was getting exactly what he needed.  And now I am hearing that it's still not enough for him.  It could be worse, he's not being transferred to the "special school".  Not yet.  They apparently still think that he can succeed in his current setting.  So that's good.  But as with any discouraging news related to the boys, it feels like a knife in my heart.  Of course I want to hear that he's making great strides and blowing his teachers away.  So I need to bring my expectations and hopes down a notch....for now.  And I need to refocus on what I can do. Time to pick myself back up and get moving.

This past week was excellent in terms of gaining new knowledge.  As I mentioned in my last post, I feel pretty overwhelmed.  I feel that familiar panic that comes on whenever I realize how much I want to do in my efforts to help the boys.  And I want to do it all RIGHT NOW.  I know this is of course impossible.  Step by step. 

One of the first things we need to do is take our gluten and dairy free living a few steps further.  Eating crappy gluten and dairy free junk food does not help the kids much more than eating regular stuff.  Especially with Nate's yeast issues.  As Dr. Usman said at the conference, we need to go "caveman".  What does this mean?  Think meat, protein, veggies, fruits. Fewer pretzels, cookies, sweets, snack food in general.  Carbs are carbs, gluten free or not, and yeast feeds on sugar.  That was the premise of Nate's previous regimen, the specific carbohydrate diet.  I'm not planning on taking it back to that level.  Just fine tuning some.

Another huge issue is our food source.  We need to be very careful about this- these kids are clearly unable to clear toxins in the same way as the "typical" kid.  Things just affect them more.  Meats and eggs need to be specifically growth hormone and antibiotic free.  I mean, I am supposed to give Nate nystatin when he is on antibiotics right?  So if he is getting meat or chicken that has been given antibiotics, he basically should just be on nystatin forever?  We have found a dairy, courtesy of a mommy friend, that delivers fresh meat, eggs, chicken, dairy, yogurt, butter, etc as often as weekly for a less than $5 charge.  I "applied" for service today, we just have to ensure that we are on one of their routes.  Also, plan on seeing me at the farmer's markets this summer.  Even organic fruit that is stored in plastic can be leaching chemicals from the plastic.

Which brings me to my next point.  We are going to eliminate plastic as much as possible.  And this is for selfish reasons, not because I am protecting the environment, although that's a nice added bonus.  It's because of all of the chemicals that can leach into the nice fresh food we are providing.  Yes, most things are bpa free now, but there are other chemicals in plastic, plenty of things to avoid.  Why go to all of the trouble of going organic if we just pop this healthy food in plastic?  Doesn't that defeat the purpose?

I never thought I would take this type of intervention so far.  I scoffed at all of the "clean living" stuff, the green containers, the safe cleaners, etc.  But Dr. Usman said something that just keeps echoing in my head.  I think it will have the same effect on my readers.  She said "There is no such thing as a genetic epidemic."

It would take hundreds of years for the incidence of autism to increase as greatly as it has in the U.S. in the past 20.  Here are a few articles related to this:

http://www.autismcharlotte.com/reports/

http://www.foxnews.com/health/2013/02/05/can-autism-be-prevented/

http://americannutritionassociation.org/newsletter/dr-usman-autism-0

So once again I am confronted with that whole darned concept of....why the hell not?  How much more effort will it take for us to make these changes?  And as always, one of my biggest considerations is, will this hurt them?  Absolutely not.  It will help them, and it will help me and my husband. 

Some people think that all of these theories are ridiculous.  I beg of them, please give me some other explanation for what is going on with my boys.  Please tell me what YOU think is going on.  That's right.  No one seems to have a logical explanation for the explosion in numbers.  And I used to think "oh it was just under diagnosed before". Bull pucky.  If someone had seen Nate 15 years ago, they would NOT have looked at him and thought, oh he's just a late talker.  He would have been diagnosed.  No doubt in my mind.  It is clear to me that the incidence of autism truly is increasing at the rate that's being reported.   So bye bye antibiotic fed meat, plastic, carbs.  If you are on the list of possibilities, you are not welcome here any more!

A Delicate Balance

There are so many things I could be talking about, but tonight I am talking about Nathan's gut.  I put that video up the other night, one, to enlighten others, but two, to vent some frustration.  Because that was Nate on a pretty bad day.  He was not responsive at all, unable to focus, definitely in his world and unwilling to join us in ours.  I can't say that this is the norm for him anymore, which I am very grateful for, but seeing him like that gives me a lot of anxiety, makes me feel like we are backsliding.  The straw that broke the camel's back for me was the note I received in his little school communication book from his teacher yesterday.  It confirmed that they were completely unable to engage him at school.  For the full two and a half hours he was there.  Mommy officially freaked out. 

This is another one of those moments when mom has to ignore the reassuring comments of well meaning friends, sitters, etc.  "He seems ok to me".  "he focused with me for a while on the ipad the other day".  I know he did- he is completely entranced with any visual stimulation, so the ipad works most of the time with him.  But when I am struggling to get him to say "more" which was one of his first meaningful words, I know it's time for action.

I had my suspicions regarding the culprit of his nutty behavior and after some discussion today his pediatrician confirmed my line of thinking.  Yeast.  Glad we paid her a visit.  Nate had an ear infection about two and a half weeks ago.  I called the pediatrician's office, but of course it was Friday afternoon and they didn't have anything available.  The well meaning receptionist suggested Righttime Pediatrics, our local urgent care center.  I didn't feel like I had any other choice, Nate was screaming in pain, so off we went.  Our visit went smoothly, other than when the doctor asked me if I was "doing anything" about Nate's autism, at which point I had to resist the urge to jump across the exam table and bop him one.  Really I am glad that he asked, not every parent is running around looking for anything under the sun to help their kid- he was just doing his job.  The issue with places like these is that they don't know your child.  So he didn't know that I'm giving the boy a ridiculous number of supplements, have him on a special diet, and send him to every intervention we are financially capable of.  He also didn't know about Nate's history of yeast issues in his gut.  When Nate was first diagnosed with autism, we sent off a stool specimen and he had yeast overgrowth, which can intensify many autistic behaviors.  Major "symptoms", which of course can be other things (like happiness) are nonsensical laughter (I know how that sounds yes), more repetitive behaviors, further regression, etc. 

What is nonsensical laughter you ask?  Well, I can describe it well- Nate used to do it all the time, and has been doing it again for the past few weeks.  When you find your kid sitting in a corner looking at nothing at all and cracking up, then you will be able to as well.  It's disturbing. 

In any case, this well meaning doctor did what he does for every ear infection, he wrote a script for antibiotics.  Nate's ear looked really bad.  So he wrote for very strong antibiotics- two full weeks of them.  Antibiotics kill bacteria, including the good bacteria that prevents yeast infections.  Strong antibiotics= yeast overgrowth in a person who already has issues with this.  I was aware of all of this, I doubled Nate's probiotics while I was giving him the antibiotic, but clearly that wasn't enough.

This means that Nate and mommy will be going through yuckiness for the next several weeks- in the form of nystatin.  For someone with thrush, no biggie, you swish the stuff in your mouth.  For Nate...where do I start?  First he hates the taste and spits it all over me.  It's bright yellow and STICKY.  I strip us both down to our skivvies every time I give it to him.  If I didn't neither of us would own any unstained clothing at this point.  We did this for 3 months last winter.  November through February.  Really, we would have no clothing. The most difficult part is what it does to Nate physically- at least initially.  It's called yeast "die off" and it's not pretty.  Major diarrhea, mood swings, head banging, and initially, further regression.  This is due to the byproducts of the yeast being destroyed.  And it sucks.  I am hoping it won't be as bad this time, as we caught it pretty quickly. 

Anyway, please keep my Natey in your thoughts as we try to get his little gut balanced again.  Last time we did this we saw a different boy emerge.  Looking forward to seeing him again!  And from now on, prophylactic nystatin whenever he has antibiotics.  I prefer the annoyance of giving him something he hates to the heartbreak of watching him backslide any day. 

Information Overload

Wow.  Today was intense.  No, Frankenstorm has not yet reached us, although intense preparations are in progress- generator is gassed, in the wagon, and aimed at the exit of our garage, extension cords are detangled, we have purchased water, beer, wine, beer, wine, D batteries.  We are ready.

However that is not what this post is about.  I had an amazing opportunity today (as did our entire local TACA chapter) to hear the illustrious Dr. Anju Usman speak.  She is a prominent DAN! doctor who is based in Illinois.  It was amusing really, they turned the lights down at the beginning of the lecture, then changed their minds, worried people might doze, and turned them back up.  This was information for my children- my ears were glued wide open- the only way I was dozing off was if I received a blow to my head.

The main topic of the lecture was the gut-brain connection in autism and various treatment modalities.  All of this is controversial.  The medical community at large has not accepted these practices as of yet, mainstream medicine still considers autism to be a behavior/mental disorder.  Here is the basic definition in Stedman's Medical Dictionary (one of the first texts you are handed in nursing school- or at least in the "old days", haha)

1. A mental disorder characterized by severely abnormal development of social interaction and of verbal and nonverbal communication skills. Affected people may adhere to inflexible, nonfunctional rituals or routines. They may become upset with even trivial changes in their environment. They often have a limited range of interests but may become preoccupied with a narrow range of subjects or activities. They appear unable to understand others' feelings and often have poor eye contact with others. Unpredictable mood swings may occur. Many demonstrate stereotypical motor mannerisms such as hand or finger flapping, body rocking, or dipping. The disorder is probably caused by organically based central nervous system dysfunction, especially in the ability to process social or emotional information or language. Cf.: Asperger disorder

There is of course no mention of genetics, actual medical causes, and certainly nothing about the GI tract in this definition.  In order to start learning about these aspects of autism (and note that I do not say theories, as I believe them to be fact), one has to do their own research, to connect with the right people, to stumble upon an amazing pediatrician like our family did.  Our first pediatrician labeled Jack manipulative and "difficult".  The first developmental pediatrician told me not to bother with any special diets, if I wanted to try anything, B vitamins would be a good idea.  So when we first went to see our current pediatrician and she started talking diets, supplements, blood, stool and urine tests, I was overwhelmed to say the least.  Last fall was a blur of trying to implement everything that was being thrown at me, and then trying to understand why!  And I was a biochemistry major!  Can't imagine how other parents with different backgrounds must feel when confronted with all of this.  I thought our pediatrician was so "radical", and for a general ped she is, but in reality she was just getting us started on the right path.  And I have known for awhile that there is much more that we need to do.  Today just drove that point home a little more.  Consider me once again overwhelmed and confused.  I am not confused about the actual interventions, not even their scientific basis. I don't know what to do first, I don't know what each of my kids needs.  And they are so stinking different.  We go to see our autism doctor in less than two weeks- I will be armed and dangerous when I walk in to his office. 

Dr. Usman went through all of the functions of the GI tract, which was in general a review for me. Then she went in to many of the issues that can cause impairment in the function of the GI tract- bacteria, yeast, "leaky gut" (basically not absorbing nutrients appropriately)- it's all very complex, and if I were on the outside of this situation looking in I would find it completely fascinating.  Instead I find it horrifying- when it's your kid, you're sitting on the edge of your seat, you want too throw yourself at this person's feet and scream fix them, please!  Of course I didn't do this- I was grateful just to hear her speak for 3 hours. 

I am going to try to curtail the amount of information I communicate, as I know I have a tendency to start throwing a million different things out there and making people feel like their heads are going to explode (lol). I will say that the things that she talked about in her lecture touched on almost all of my areas of concern for the boys.  The very first thing she talked about, before she began her own lecture, was the MTHFR gene and research being conducted on this and what they are now calling "cerebral folate deficiency".  This just confirmed that I will be asking the autism doctor for an Rx for methyl folate.  I think the boys need it and I think he will agree.

Other areas that I have new plans for:
Jack's attention- I want to try GABA for him- Lee Silsby, my favorite compounding pharmacy has a cream- how much more convenient can you get when your kid can't swallow pills yet? 
Their guts- I want them retested for yeast (this is at least $200 out of pocket for each of them, sigh).  In fact I don't think Jack was ever tested for yeast- and he had major dental issues last year. This is a sign of many nutritional issues including gluten intolerance, but it can also be a sign of yeast.  He has many of the hallmark signs of yeast overgrowth- I am just so worried about Nate's speech all the time that I feel like I overlooked it.  They both likely need more probiotics and more cleansing diets- ie, fewer processed foods.  Nate may even need more antifungal medication to treat his preexisting yeast. 

There are many many other things that need to be investigated.  So many that I just can't even get into it here yet.  I need to sit down and do some major research.  In between preparing for the hurricane, reading for my More Than Words Class and developing new goal oriented behavioral play plans for Nathan that will be videotaped again soon, trying to keep up with the current interventions, cleaning, doing laundry and going to work.  Oh and cooking the special diets.  And Jack's OT gave me about 5 articles to read today, and "prescribed" several new interventions.  And even our marriage counselor handed us articles on autism and interventions this week- everyone is getting in on the action :).  I don't believe in cloning- except, right now, for me.  I need two of me.  (Ok Helen you can be cloned right now too, and Jo you too) I am glad that I feel overwhelmed by valuable information and the number of interventions that I want to try for the boys.  At least I am not lost, at least there is something I can do.  Man, I really need to make some lists!  

Sending some prayers to my two dear friends mentioned above.  You have both been so incredibly supportive of my family, and I will do anything I can to support either of yours.  Love to you both and wishes for a smooth next couple of days- you are always in my thoughts. 

New Directions

I had a very insightful conversation last night.  I spoke with one of John and my family members, who also has experience with having children with autism.  I won't go into more detail than that as I do not know if this person is comfortable with it, but needless to say, she also has multiple sons on the spectrum.  They are older than our kids and she was fighting this battle with half the resources I have, and did amazing things for those kids.  I have had her phone number for months, but for some reason I felt very hesitant to call- I am so glad that I did. 

Family commonalities.  In health conditions, in manifestations.  It is mind boggling to me.  And such a huge wealth of information.  I now have several new avenues to explore for the boys.  I am not saying that it is a guarantee that these will also be issues for my kids, but they are definitely areas that I should address, as this is the closest link we have had thus far.  So I will be looking for a gastroenterologist in this area, and I will be asking them to test for certain enzymes, and to look at the yeast/bacteria balance in the gut more carefully.  Asking them to take a closer look at Nate's immune system.  And hormone levels.  Say a prayer for us that some of these things pan out.  Thanks.