My belief is based on both my extensive reading of the medical literature and, more importantly, my observations of Alex and me – and my many clients.

To update on things here:  as I wrote about months ago if you recall, Alex had begun to scratch his own skin off.  To watch him you’d think that bugs were crawling around the inside of his skin.  48 hours or so after I put him on the gut antibiotic, Vancomycin, the scratching stopped.  Why did I put him on Vanco?  I hate using the expression but…gut instinct.  There was nothing wrong with his appetite, his BMs, etc.  But…something just told me that it would help.

3 weeks ago, after keeping Alex on the medication for 2 months, I thought I’d stop it to see if he could do without.  1 day shy of 2 weeks off it he began to scratch again.  By that evening he’d scratched up his shoulders and made a gouge behind one of his ears.  He also began to show signs of extreme tactile defensiveness – which was the first symptom of his impending autism when he began to regress in his 2^nd year of life.  Showering became a nightmare again, with my now 5’11”, 160 pound son jumping out of the tub half washed, screaming and refusing to get back in. 

One thought went through my head:  “When he was on the Specific Carbohydrate Diet he didn’t need these antibiotics.”  As hard as it was going to be on both of us, I knew what had to be done.  The next day, he was fully back on SCD and back on Vancomycin.

Last week was downright hellish.  He went through ferocious die-off.  In fact, since then he has yet to have even a vaguely formed BM.  Worse than that, last Wednesday and Thursday he spent a good portion of the day screaming and banging his arms into the walls and furniture.  He was badly bruised from wrist to elbow.  He screamed for French fries over and over again, and when I kept gently telling him no, he’d scream even more and bang himself.   Even when he wasn’t screaming, he barely talked, wouldn’t smile, and was often sickly and lethargic.  It was heartbreaking.  No other word for it.

I was shocked.  He’d only been off the Vanco for 2 weeks.  But what I saw was clear as day:  it was absolutely obvious that he has been developing a worse and worse bacterial overgrowth again being off the diet, thus leading to our need for the Vanco.  This is the 2^nd time I have unsuccessfully tried to take him off SCD.  The pattern was the same, although this time was markedly more dramatic.  Nothing immediately happened when I gave him the illegal foods.  I was lulled into a false sense of security.  The regression was very slow, occurring over months – so slow that it was virtually impossible to attribute it to diet.  And yet, the events of these last few months cannot be interpreted any other way.

It is going to take a very long time to forgive myself.  I was just so tired of restricting his diet.  14 years now of it has me worn out.  I just wanted him to be able to eat like anyone else.  But it’s never going to happen.  I now can see clearly that Alex’s immune system does not recognize as a pathogen whatever bacteria are causing the problem.  

Sid Baker explained the concept of “imprinting” on me 13 years ago.  As a new born infant begins to develop an immune system, it takes stock of what is good so that in the future it recognizes what is bad.  The cells of the body are good.  The chemicals of immunity that it’s taking in via breast milk are good.  The developing good flora of the intestines is good.  But when a pathogenic bacterium gets in there too early, the immune system will also assume that it too is good.  The first thing that happened to Alex, and so many of the very sick children I work with, was that he got sick.  He was re-hospitalized at 36 hours old and put onto IV antibiotics for 5 days.  When they were releasing him, with what was diagnosed as “a virus of unknown origin” he smelled wrong.  That’s the only way to describe it.  He just smelled wrong.  Bad smells coming from humans are mostly bacterial in nature.  (For example, poop is 60% bacteria, explaining its odor.)  Something had made its way into him, and considering the problems hospitals now have with clostridia infections, I’m guessing we found our culprit.  His tiny infant body saw it, cataloged it as one of the good-guys, and never would learn that it was an enemy.

It’s too late now.  The immune system is pretty much developed by 2, and after 12 is really frozen in stone.  Alex is 16.  My belief is that I can control the bacteria, but cannot cure it.   The toxins from it destroyed Alex’s normal development and poisoned his immune system.  And I can’t fix it.

That’s not to say that I can’t make things a little better.  Obviously, the parasites helped rebalance Alex’s immune system to some extent.  And his improved behavior overall (he is a different child now than he was before I first put him on SCD) show that I can still make a difference.  But the picture is grim.

Having witnessed this, and now not just in Alex but in many of clients, makes me more anxious than ever to get parents to do the right thing by these children before it’s too late.  As recently as a month or two ago, an article came out in the journal Nutrition entitled, “The concept of small intestinal bacterial overgrowth in relation to functional gastrointestinal disorders.”  The conclusion is that we have no good means of measuring whether or not an SIBO (small intestinal bacterial overgrowth) exists other than by treating for it and seeing if the patient gets better.  And the treatment:  antibiotics and a diet that removes foods that ferment.  Sound familiar?

The thing is, too, from a purely anecdotal stand point – based upon nothing but my observations of my own son, my friends’ and clients’ children – everything fits.  We clean up the gut flora, we improve the children, globally.

I had another kick in the pants from Alex’s gut bugs recently.  As I noted in a recent post, Alex’s dermotillomania (compulsive skin scratching and picking) flared up horribly around the start of the year.  For many years now he’s picked the skin off his fingers, but by February he was gouging his own skin off – his back and chest looked like he’d been lashed, and his ears looked like they’d been through a meat grinder.  I tried the standard treatment for dermotillomania – Prozac – and it did absolutely nothing.  In fact, it might have made things worse. 

I did a lot of thinking and then sent an email to our DAN! doctor.  “Is it possible that this is coming from his gut?”  I saw no gut symptoms – no diarrhea, no meaningful gas, and Alex’s appetite was great.  Still, call it a gut feeling…

The only way we’ll know is if we try treating it, responded the doctor, and he gave me a prescription for Vancomycin and Nizoral.  Within 48 hours the scratching had stopped.  4 weeks later, all the wounds are healed.  Alex is still going at his fingers somewhat, but the rest of the problem is entirely gone.

What does it mean?  I don’t really know.  Obviously there’s still something growing inside my son, in spite of all the years on SCD, the probiotics, the parasites, the rounds of Flagyl, the daily anti-microbial herbs, etc. that is problematic.  Clostridia is well known for its ability to form very resistant spores which can flare up even years later.  Typically though a clostridial infection would look like the Alex of old – diarrhea, vomiting, etc.  He doesn’t look like that now.  His BMs are works of art.  He is a strapping 5′11″, 160 pounds and still growing.  He is happy, making slow but real progress in therapy, talking more clearly (there’s been a noticeable improvement in the dyspraxia), and seems completely healthy. For him, he’s doing amazingly well.

So…clostridia?  I don’t know.  But the vanco is doing something good.

So, back to Dr. Nicholson.  You can read a little about him here:  http://www.scientificamerican.com/article.cfm?id=jeremy-nicholsons-gut-instincts .  I spend a huge portion of my days thinking about gut flora.  (Yes, I know….I need to get a life.)  Ultimately it all comes back to something Sid Baker said to me when I first met him, in 1997:  “The hardest thing in the world to fix is bad gut flora.”

From the shoulders he soon moved onto his ears, then his back, and then his chest, all the while of course, still picking the skin off his fingers.  I turned to our doctor for help.  The standard treatment for dermotillomania is one of the SSRIs.  We put Alex on a smidge (3 mg) of Prozac.  It seemed to stabilize his mood at first…but did nothing for the scratching.  As we went slowly up on it – to see if it would help at a higher dose – the scratching got worse, if anything.  By 15 mg, we gave up, and I slowly took him off it.  Next, we tried an antihistamine to see if it would take down the “itching” but it did absolutely nothing. 

I went looking for some answers on the Internet (anything that might help – I am pretty desperate) and found US Patent Number 7,393,538 B2, entitled Clostridial Toxin Treatment for Dermotillomania.  I sent it on to the doctor asking, “Is it possible that a resurgence of clostridia could be causing this?”  His response was essentially “let’s find out” and he prescribed for Alex Vancomycin.  I started the medication yesterday – I will update in a few days on his response.

Back last winter, about 10 months ago, I started Alex on minocycline, a tetracycline antibiotic, because he had developed some pretty severe acne.  I was particularly interested in trying this medication because it is also a pretty powerful anti-inflammatory, and actually crosses the blood-brain barrier, reducing glial cell activation in the brain.  Sure enough, within 48 hours of starting it, Alex stopped finger picking entirely.  His mood seemed to improve and generally speaking, he seemed to feel better.

However, as happens so often with our children, over the next number of months, it seemed to lose its efficacy.  By the summer, his acne was back and by September, so was the finger picking.  I let it go a bit, hoping it would all clear up, but all that happened over the next two months is things got worse.  Finally, about 10 days ago, I stopped it completely.  And because autism isn’t enough of a mystery, what happened?…The acne and finger picking began to clear up.

I don’t know what it means.  Why did it work so beautifully at first and then over time, evidently exacerbate the very problems it was supposed to help? 

There’s one theory that makes a little sense, although again, I’m not claiming to really understand it.  Marc, from Autoimmune Therapies, told me that antibiotics seem to stop the worms from laying eggs.  Is it possible that at first, the minocycline did what it was meant to do and then, as it stopped the egg production, caused more problems than it helped?  And why should egg production matter?  Marc tells me that many people have reported to him that when they take antibiotics, they lose the positive effects of their worm populations but recover them over the week or two following the cessation of their antibiotics course.  I really wish we had some real science to explain all this.

Apart from the improvement of the acne and picking (which, by the way, has a name:  dermotillomania – a kind of OCD behavior, akin to manic hair twirling), I see no improvements in Alex.  We’re in a major rut.  He’s fine…but nothing great happening.

Where to go from here, I have no idea.  I am, for once, at a loss.  If I could afford it, I would probably get some more TSO.  However, that’s just not happening right now.  As soon as I come up with another brilliant (!) idea, I will post it.  For now, well, I’m thinking.

6 years of SCD, 24 hookworms and 600 TTO later, I am happy to report a serious dearth of vomit and diarrhea in our household. And while Alex’s sleep isn’t stellar (he’s having trouble falling asleep 2 or 3 nights a week), this fall has been pretty damn wimpy, in comparison. 

Overall Alex remains happy and calm.  Acadmics are in a rut, but we have lost none of his new skills, which is good news.  Negatives:  finger picking is back and as bad as ever.  And his teenage acne has also flared up badly. Neither seems to be responding anymore to the minocycline.  I have an appointment with our doctor in 2 weeks – I think the time may have come to move on. 

After several long talks with Marc and Jasper at Autoimmune Therapies, I was considering upping Alex’s family of hookworms.  Seems to me that it is something to explore – see what happens with 10 or 20 more.  However, as many of you know, the FDA told Jasper a week or two ago that he could no longer sell the worms in the U.S.  A terrible shame, considering the positive effects this therapy has been having on so many with various immune-based diseases – my own children not the least of these.  I’m not sure what I’ll be able to do, worm-wise, going forward.  I may end up having to buy more TSO in the future, but where the money to do so is coming from, I don’t know.

Alex continues to do very well globally.  I’d say that for now, he is stable.  His behavior is very good most of the time: he is happy, loving, and fairly calm.  He still engages in a lot of hand flapping on and off, but not to the same degree and he no longer jumps and squeaks/screams.  His receptive language is excellent – I can’t say I’ve seen much improvement in his expressive though.  Apraxia still continues to be a monumental issue.  Periodically he still has massive tantrums, for no reason I can sort out other than sometimes hunger.  They are very short, for the most part – maybe 5 minutes. 

He is now going to a new school program, a less restrictive environment.  He is out and about much of the day, swimming or exercising at the YMCA, going to work sites, eating lunch out, etc.  He seems very happy there although I have seen an increase in his stress behavior, finger picking, which has me worried.  He hadn’t done it for months – now it’s back with a vengence.  I had been trying to wean him off the minocycline, but now may not be the time.  Looks like I’ll have to go back up to 200 mg daily.  Of course, it is also the fall and this is Alex’s worst time of year.  There are definitely moldy looking leaves on the ground.  Generally his sleep has remained ok.  I haven’t seen much regression, which is a huge relief, especially when you compare where we are now as opposed to last year, after the OSR debacle.

Liam is doing great in school.  He loves it and seems very happy.  He had a big flare up of foot and regular eczema recently.  Fall?  Stress?  I’m not sure.  I just found out this past weekend that he is hypothyroid.  Hopefully, as we sort out the right dose, some of his niggling issues will also vanish:  for example, those strange days of exhaustion he gets, when he can barely move he’s so tired.  The unexplained weight gains is another. 

My father continues to be pretty thrilled.  It has been months now and his senses of taste and smell are acute all day every day.  Obviously the worms may hold some benefit for those with Samter’s syndrome. He has not dared to go down on his asthma meds yet though, and post-nasal drip continues to be an annoying problem.

Me – I can’t say I see much improvement in symtpoms from the TTO and the hookworms.  On the other hand, my ANA is normal and the rheumatoid nodules on my fingers shrunk and/or vanished, so perhaps if nothing else, they will keep me from developing another autoimmune disease.  That’s enough – I’d be satisfied if that was “all” I got from them.

My clients continue to do remarkably well – sometimes astoundingly well - on helminths, both young and older children.  I continue to believe absolutely that this, along with the Specific Carbohydrate Diet, are the two most important treatments in autism that I have seen.

The initial dose of TTO was very small – only 50 ova.  The next dose, which will hopefully arrive this week or next, will be bigger – about 150. 

Liam’s foot eczema did come back a bit this past week.  Nothing like in past years though.  He’s had only 2o or 3 bad days of body eczema this entire spring/summer.  Alex is still happy as a clam most of the time.  No drop off in mood or academics/attention. 

All in all, I’m very pleased with how things are going.

Alex is obviously feeling great.  He’s smiling his head off, eating and sleeping like a champ, calm, not picking his fingers, and doing great in therapy.  In fact, three days after drinking his TTO, he did a math worksheet on his own.  On the left there are pictures of boxes.  To the right, a math problem (i.e. 7 – _ = ____)  He counted the boxes, filled in the blank, did the math in his head and filled in the answer.  Now, this may not sound like much for a 15 year old boy, but considering that he only started to write 2 weeks ago – and considering that a year ago he did not have 1-1 correspondence, let alone being able to independently do subtraction…

You have to admit, it’s not bad!

So, obviously things are continuing to improve here.

Out we went.   Half joking, I asked him if he wanted a basketball.  Alex, you see, does not play with anything appropriately.  He loves balls, but only to essentially stim with them – flipping them in his hand, bouncing them by himself…

Yes, he wanted a basketball so I handed it to him.  He took it, walked over to the Liam’s basketball net, and started to shoot hoops. 

For 45 minutes, my son – who has never even had the coordination to throw a ball up in the air at the net, nor who ever had any interest in doing so – dribbled, took shots, took rebounds from Liam who was so excited that he just had to join Alex. 

He also got in about 50% of his throws!

Me and my parents, and Liam, stood there screaming every time he landed a shot.  It was unbelievable.

Between the writing last week, this yesterday, and the new sounds he’s managing (he’s finally gotten a Y a couple of times, and even a TH), I have to believe something is happening to reduce his dyspraxia. 

Stay tuned.

This week he wrote, independently, 9-8=1.  It was not even copied from a model.  It’s not the neatest thing in the world, but it’s certainly legible.  He also wrote 9-7=2, perfectly legibly.

I’ve shown it to multiple people and more than one has suggested framing it.  I think that’s a reasonable idea.