Autism: A Full Body Disorder

I posted this on Hopeful Parents earlier this month and neglected to also post it here.  Sorry I have been MIA.  I will follow up with a verbal spewing of the not-so-fun events of the past several weeks.  Of course, there were those six magical days in Hawaii scattered in there, too, and I promise to not forget the niceness of that!

We are in the midst of a burst of long awaited discovery.  For the past three years I have watched my son regress before my eyes, knowing in my gut that something was causing it above and beyond the transition of a cross-country move.  Unfortunately, it takes a lot of tests and the right doctor to help you get to that discovery; but I feel fortunate that one doctor's departure from a clinic was finally the door that opened for us to be able to see the founder of that clinic instead.  

Our current developmental pediatrician has been described by people I have met as 'amazing,' 'brilliant,' and 'talented.'  After only two appointments with her, I also gladly ascribe those terms to her.  She listened intently and came up with three new avenues in which to look for culprits that have attacked my son's body.  The first was a lyme disease challenge test.  There is no definitive test for lyme, but the hope is that by treating a person as though they are infected with the lyme parasite, you have a better chance at stirring up any potential bugs in the body and then testing for them.  Of the three components of the test, only one came back as a very big positive: the measurement of my son's natural killer cells. He has an extraordinarily low number of these important cells which can also be associated with chronic fatigue syndrome.  M has also been hypocalcemic for three years despite supplementing with calcium.  We have never chelated, the procedure you most often hear about in conjunction with hypocalcemia.  The googling I have done on this condition worries me greatly, but this doctor feels that it is likely a direct effect of years of viruses taking their toll on his sytem.  I can only hope that she is correct.

We also tested his blood titers for various viruses.  His labwork came back showing that he actively has the herpes virus in his system.  Many of us will have this virus at some point, but in kids with compromised immune systems, it's even more difficult to shed and can cause swelling on the brain.  Our current course of action is a month-long (possibly longer) trial of the antiviral medicine, valtrex.  While the side effects of this medicine (along with quite a few homeopathic supports to his immune system) are tough, we have seen a calmness and clarity that hasn't been there in quite some time.  The poor boy is burpy and feverish at times, but in the midst of that, he answered my plea to 'please tell Mommy where it hurts' by fervently patting his head and his tummy repeatedly.  I can't quite remember the last time he was able to answer me...even in a non-verbal way.  We have also seen a HUGE decrease in his desire to chew on inappropriate items or go into our kitchen pantry or refrigerator.  This had become a great source of stress for me, so I am extremely grateful for this change.

Lastly, we are going to see a more specialized pediatric neurologist in late July.  A year ago a very basic MRI and EEG were performed to see if M had Landau Kleffner syndrome.  The only thing that came out of the tests was a finding of a rare, right brain wave spike in his right frontal lobe.  This spike is consistent in children with autism, and puts him at a higher risk of having seizures one day.  Though that neurologist closed the book on the possibility of Landau Kleffner, my husband and I always felt suspicious that there was more to things than what the tests revealed.  Our doctor has two other patients that present similarly to M in their late regression, fairly clean, initial MRIs and EEGs, and yet one did go on to see a specialist who in fact found that the boy WAS having sub-clinical seizures that had been harder to detect with a basic EEG.  That boy is now following Landau Kleffner protocol of anti-seizure medication and prednisone and is apparently making awesome gains.  Though the thought of putting M on anti-seizures meds is scary to me (I have a niece who has been treated-and, I believe, harmed-with quite a few of these medications) the thought of him potentially having seizures that have gone untreated for such a long time is even more frightening.

We've still got a long road ahead of us.  Not only will he need immune support for some time to come (if not forever), but I still feel there may be more health discoveries to be made.  I am hopeful that my little man will feel more alert, less uncomfortable, and be the happy-go-lucky boy I once knew again.  I am not trying to 'cure' his autism, but I am going to do everything in my power to make sure his body is as healthy as it can be. 

Wanna Hear A Funny Story?

Our insurance company (ha! I made a typo at first and wrote 'sinsurance') wanted us to have a conference call with them this morning.  They gathered some big wigs in the room like their clinical social worker in charge of the 'care' management team, a senior care manager, and a doctor from the Bay Area who is a board certified child psychiatrist and director of behavioral health.  The purpose of the call was for them to give us suggestions that we may not have already come up with to better our child's health.  (HAHAHAHAHAHAHAHA)

So we discuss the speech and occupational therapy we're doing privately and at school.  Child psych agrees this is a good thing.  (gee, thanks)  Child psych then says that he noticed that in the last seven years we have not yet seen a child psychiatrist.  I had been concerned that this man would 'advise' us to seek medication for M, so I asked him straight out if that was his point.  He responded by saying that he didn't necessarily agree medication was always the right thing and couldn't comment specifically on that since he hadn't met our son.  Good man for saying that because I'd a pulled out a can of whoop ass if he had!  But he said that a psychiatrist would advise us on other behavioral interventions.

Wha??  Stop right there, doc.  So I said to him (in my best lawyer-esque, leading question, sort of way) 'exactly what other behavioral interventions could you mean??'  I'll give you one guess what he said.......

Wait for it....

Applied Behavioral Analysis!  The very reason we were having the freaking call!  Because the stupid-ass insurance company believes it to simply be educational and not worth of covering.  Anyone else find this ever-so-ironic?

They took it one fabulous step beyond that and let us know that they'd been awesome enough to do some research for me and found a provider who would charge us a lot less than our current provider had.  Of course, this would come from our own pockets, but aren't they so great to have done all that legwork and made all those phone calls for little-old-us?  Wow, I am so honored.

I made a point to remind them that the only reason we'd gone with the provider we had was because at the time they were the only ones in-network, which was their requirement.  I also made a point of reminding them that the reason our therapist was more expensive than most therapists was because they required her to be of a higher accreditation.   Funny, no one said a word after that.

We let them know that we'd be starting the tedious appeal process immediately knowing full well they're going to deny us at first.

What a joke.  What a freaking waste of our time.  $#@(**!!

This Is A Post About Poop

I just thought I'd warn you, okay?

If you're a parent of a child with autism, you probably chuckled and thought, 'Yeah.  SO?'

We just got back from an appointment with our developmental pediatrician who is also a DAN! doctor.
Our M has had a history of some pretty wicked gut bugs that have required the treatment of some high-powered antibiotics and yeast treatments to kill them.   And then, of course, our daily dosage of probiotic to keep him supplemented in the good stuff.

M has a really distended tummy that looks kind of painful at times and is often shown off to the world because he is constantly lifting his shirt and tickling or rubbing on it.  He's a size 8 in the waist and a 6X in the length, so we have one heck of a time finding comfy pants for him.  I'm pretty sure he's destined for a life of elastic or drawstring waistbands, the poor boy.

Anyhow, we did yet another lovely stool test to see if his previous gut buggies were back in force causing the latest belly pain and distention.  For those of you who have never had the pleasure of trying to get a stool sample from your child, let me offer you a pat on the back and a 'lucky you' because it's one hell of a treat, let me tell you.  The past four times I had to do this, I obtained our 'specimen' by holding the lovely fast food, french fry-like paper tray the lab gives you in between my poor child's legs as he sat on the toilet (you'll never eat fries from In n Out burger with the same gusto, I promise you).  This while simultaneously hoping that he does not squirt out a tiny bit more pee on my wrist or worse, in the sample trapper, thus tainting the french fry tray and rendering it useless for said poo sample.

M was younger and much less stubborn the last times we tried this, so I was able to get what I needed with my arm going only partially numb.  That method was not going to fly this time around, however, so I needed to get creative.  I'd heard of people turning off the toilet water after flushing so that the toilet was empty and then putting some sort of bowl in there to catch the poo.  I don't know about you, but I like my cookware and storage receptacles too much to subject them to that sort of torture. Because surely people don't actually keep them after they've been used to trap poo, right? So ingenious girl that I am, I decided to create a tin foil poo catcher by spreading a piece out beneath where said poo would fall (and away from any potential pee tainting), securing it by putting it between the bowl and the seat.  Since I am no longer employed in the out-of-house work force, I felt pretty good about using my remaining brain cell to come up with such a contraption.  I'll gladly lend the rights of my idea to any of you in need of it :)

I will spare those of you who won't be subjected to this delightful process the details of what happens next with the ice cream tasting spoons supplied in the kit.  Let's just say the other half could never handle this without losing his lunch...trust me.

Fast forward to today's result-learning doctor appointment...I would hereby like to exclaim to the world that M, distended belly and all, has NO weird buggies inhabiting his gut NOR any yeast wreaking havoc.  The only negative blip in the report was that he's lacking in some of the good gut flora; a point that stumped our doctor since M has been supplemented daily with one of the strongest probiotics.

We still can't figure out why the continued loss of words (down to no regularly heard ones at all) and the potty training regression.  Despite that, I'm still pretty freaking happy to not have to wrestle with my 61-pound seven-year-old in order to give him antibiotics and anti-fungals.

Another oddly fulfilling day in the life, I suppose.  I'll take it!

Nu Life Allergen-Free Foods

We were fortunate enough to participate as a founding family for a wonderful new line of frozen foods for people with food allergies. I was beyond impressed by just how great tasting their products are!

Now that their web site is live, I strongly recommend you check them out!

My favorite products are the chicken pancakes and shepherd's pie. I just placed an order for both and am going to give their daiya cheese pizza a try as well.

Thank you, Nu Life!

http://www.nulifefoods.com/

Getting To The Bottom Of It

I have been convinced for some time that something else is going on with M. When I describe the regression over the past two years to doctors and professionals, they all agree that it does not make sense to have regressed so greatly after the age of four, and that the transition-though certainly hard on him-cannot be the only reason for all of this.

I was convinced last Spring that we'd find something in the panel of tests we did with the genetics team. He has so many features of fragile x, but alas, no answers there.

I switched to a new biomedical team last October and the developmental pediatrician I work with is a very thoughtful man who really listens to my concerns. Though he is a bit baffled by it all as well, he is totally open to and in agreement with pursuing all options to get to the bottom of this.

You may recall us venturing down the road of PANDAS. M had several bouts of strep throat this past year and always showed great improvement of skills and behaviors while on antibiotics. We drew ASO titers (blood testing for strep levels) and they were <6; thus in the normal range. My next question for the doctor was whether or not M could be having seizures without us realizing it. The answer was that this is absolutely possible. Yikes. We had a neurologist back on the mother ship that we were very displeased with. He spent very little time with us over a three year period, and basically dissuaded us from doing some of the bigger neurological tests because 'we probably wouldn't find anything.' A few days ago I met with a very different pediatric neurologist who within five minutes told me that we absolutely need to do an MRI and an EEG to rule out Landau Kleffner syndrome, which I had ironically discovered just the day before our appointment. This is a very rare syndrome, but at least we could treat him with anti-convulsants and possibly get back a little of the boy we seem to have lost.
We will also do another big blood draw to retest for some metabolic disorders as well as test M's thyroid levels. It is a strange thing to hope that they find something in at least one of these tests, but that is where I am these days...hoping to find an answer to SOMETHING.

And if they all come back negative, our next discussion will be along the lines of prescribing resperdal or abilify to M. I did not want to go down that path, but I feel like we have exhausted our options at this point. Even our developmental pediatrician--a man who fully believes in treating with vitamin supplements and diet, and who wrote a book about treating ADHD without drugs--suggested that this might be something M needs in order to lead a more fulfilling life. Sigh.

So hopefully we will be able to schedule these tests fairly quickly and with little to no gruff from the insurance company. I am not looking forward to the fact that we will have to use two different sedatives for the MRI and the EEG, so please keep M in your thoughts that he has no adverse reactions to either.

I will keep you posted.

Frustration

I left a message at 10 am this past Monday morning for the new special education director of our school district. I left a message at 10 am on Thursday for her. I also left a message at 1:30 pm today. Guess what? I still haven't heard back from her!
I'm getting weird vibes from M's teacher, so I have a strong hunch the director is gathering as much ammo against us as she can before we speak...but how freaking unprofessional is she being by not getting back to me?

And here's one for the 'she-really-said-that?' files...one of M's aides who has in the past expressed interest in learning about some of the biomedical stuff we are doing with him used my past discussions about PANDAS and strep titers in a most inappropriate manner...
M had a VERY bad day on Tuesday following a night when he woke up at 4 am and kept the rest of us up as well. When I went to pick him up, one aide said to me, 'He is being nasty. Just nasty! He is really lashing out at everyone.' And then the other aide in this whiny-ass voice said, 'Yeah, he scratched me really hard. It made me bleed and hurt a lot.' And the kicker...'I probably shouldn't ask you this, but do I need to be worried about that bacteria you told me he might have?'

I paused with furrowed brow wondering if I'd really heard her ask such a dumbass question. I finally could only respond with a 'Whu?? No!' I told the other half that I wished I'd been quicker and actually said, 'No, you don't need to worry about the bacteria, but you should probably worry about the very rare South African Wamu Wamu disease that he has.'

She's a dumbass...

They are all dumbasses...

Am I being too harsh?

Christmas

We decided to take a last-minute trip to Tahoe for the holiday. We found a beautiful house that had all the comforts of home; minus the tree, of course. B was amazed at the snow which stood two feet deep on all parts of the property. He liked it until it went inside his ill-equipped rain boots, soaking both pairs of socks he wore and making him done, done, done with the snow. RIGHT.THEN!
I usually love renting homes in beautiful places like this, but for some reason I just could not get myself into the groove of this one, no matter how lovely and comfortable it was. I couldn't relax. I didn't sleep well. I didn't sit and read my book as planned. It was as though three days came and went in a flash that left me only with the rushed feeling of having to pack up the car and come home to mounds and mounds of laundry. I'm not quite sure what my deal was, but I am happy that at least B keeps saying he had a great time at the 'vacation house.'
M has been a bit tough this past week, and I am certain that played the largest part in my apathy toward our getaway. He has been physically hurting us several to many times a day. The other half received three cuts on his face during those three days, and I am marked with tiny fingernail-shaped scabs on my hands and wrists. He has become a master of using his nails to pinch and hurt...the same nails that scratch on walls and won't allow themselves to be cut more than two at one sitting. So needless to say, they are jagged and can really hurt. But the cuts really don't hurt more than our feelings do. How can your own child lash out at you continuously like that? Doesn't he love us? Well, the answer is, of course he does. We realize that he is beyond frustrated at not being able to communicate his needs or how he is feeling and it's human nature to lash out at those you are closest to. But nonetheless, when I see the clenched jaw and hear the.noise I can't help but flinch and try to run away. It is also human nature to not want to be hurt by someone, even if that someone is your beloved six-year-old child.
On the plus side, however, we were really pleased with how much he is trying to talk to us since school break began. You can really tell he is making desperate attempts to find words to tell us what he wants. Another plus that at first seemed like a negative was that we believe he was really and truly excited about the prospect of Santa Claus visiting us and leaving presents. He has been having great difficulty calming his body to go to sleep lately, but once he finally does he is a heavy sleeper who will sleep until 9 am if allowed. On Christmas Eve we had an even more difficult than usual time getting him to bed, and once he finally did he was then awake and wandering at 4:30 am, and then up for good at 7 am. I think he knew what was up and that made me feel a bit reassured.
I also am coming to the conclusion that M is suffering from gut pain. His poor belly is so distended and on days when he seems to be more irritable than normal, his belly can be almost rock-hard in spots. Remember when I mentioned PANDAS and the strep titer? Well, we ran a whole slew of tests and found that his strep titers were actually normal. This was surprising since he very clearly responds well to antibiotics. The doctor was hesitant to prescribe more of them, but felt we needed to do another trial to see if we got another good response. We just completed two weeks and though the tantrums and aggression were not as under control as they were in November, his teachers definitely reported that he was more 'on.' Another interesting thing to note was that when not on antibiotics, he was/is having potty accidents. It is incredibly frustrating. Fortunately for us, he has not defecated in his pants in over two years (knocking on wood) and only urinated. But despite having us put him on the potty over and over, he'll just pee his pants and sit in it as though he does not even notice or care. It's bizarre.
The other test we ran also showed concern with his gut. M has been supplemented with vitamins like zinc, magnesium, calcium, etc. for two years. Oddly, these were all the things that were out of range, low, on the blood tests. He is also quite low on iron, which we just began supplementing yesterday. What does this tell us? It tells us that for some reason he is not absorbing nutrients properly. There are theories about children with autism having a condition called 'autistic enterocolitis.' This term was coined by the controversial Dr. Andrew Wakefield of Thoughtful House where M was seen until we recently decided to find a local biomedical doctor. There are many people who are in disagreement about this conditions existence. I, however, have met way too many people who have children on the spectrum with similar digestive problems to dismiss this as a very real possibility. So I have contacted Thoughtful House to begin the process of seeing Dr. Arthur Krigsman who is considered the best pediatric gastroenterologist in the autism field. I have no idea when we will get back to Austin to see Dr. Krigsman, but I am hopeful that he will find something that is treatable to help get M back on track.
My other plan of attack is to once and for all build up my kahunas to finally pull M out of this awful school. I just canNOT let the teacher saying to me 'Maybe this is just who M is' go and I realize that these people are only continuing to further damage my child. Might sound extreme, but I fully believe that they are. Once I figure out the legalities of it all (do I have to register as a homeschooler, etc.) I will withdraw him. I am very hopeful my experiment will prove beneficial.

This was an extremely rambling post, and for those of you who stuck with it, thanks!
Lots on my mind, I suppose, and I just needed to spew it forth here :)

P.A.N.D.A.S.

No, I'm not talking about the cute cuddly bears from China. I'm talking about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci Infections.
Got all that?

This is a rare neurological disease with little research or basis for treatment at present. I've heard this term batted around here and there over the past two years in which we have embarked upon biomedical intervention with M. However, about a year ago, I was no longer just hearing about it on various Internet boards, I was hearing it mentioned by our biomedical doctor himself...in regards to my child. There isn't one certain diagnostic test available for PANDAS, so naturally doctors are going to be a bit hesitant to throw it out there. I did a bit of reading on it, saw where maybe it could apply to M, and didn't give it much more thought. Then on my next phone conference with our biomed. doc back in Texas, it was casually brought up again. Hmm...maybe I should be listening to this? And this time it was brought up after M had become very sick and subsequently B & I were also diagnosed with strep.

Let's backtrack a bit here...

I am likely a strep carrier. I have had it about a zillion freaking times, the last (prior to January's episode) being before I turned 18 when I finally had the disgusting tonsils in my throat removed. I thought I was finally free and clear of the evil strep until getting it again earlier this year. Did I pass on some sort of predisposition to this bacteria to my child? It would seem that is quite possible along with the various other autoimmune conditions that run in my family.

Alright, now we fast forward to this crazy-ass week...

Today we discovered that poor M has strep. I am sincerely concerned that he has been battling this for close to a month! Aside from the unbelievable fatigue he's been experiencing, I've frequently noted to the other half that he has had a raspy voice. But without any fever (until the 104 he hit the past two nights), and with him continuing to have a good appetite, how was I to know? Oh, this is just absolutely one of the hardest things about having a nonverbal child!! You just can't realize unless you live this how nice it is to have your kiddo be able to tell you when something hurts!

We will put him on the standard 10-day antibiotic treatment and I will put money on it that we see great improvements in his behavior beyond even what you'd expect simply from someone finally not feeling ill anymore. This is one of the hallmarks of PANDAS, and something we have been able to attest to with M over the past couple of years...he most definitely gains mental clarity while on antibiotics.

Anyhow, I spoke to the new biomedical doctor we have here who ironically had brought up PANDAS to me just six weeks ago during our consultation. I think we may be very close to putting a label on at least part of what has happened over the past year+ to cause M to go into such a steep decline. We will wait about two weeks from today to do a blood draw to measure his strep titre and go from there.

If you're interested in reading more about this condition, please go to the PANDAS NETWORK.

Those of you who are closest to me and know about the exact changes we have seen in M will likely catch yourselves saying, 'Uh-huh, yep, and totally' to more than a few of the descriptors of symptoms. I know I just did.

And if any of you reading have a child diagnosed with PANDAS, please let me know. I would love to speak with you further.

What To Do?

We recently took another stool sample from M to determine what was going on inside his gut. Given his hands-down-the-pants, behavioral issues, frequent illness, etc. his doctor thought it wise.

We give M probiotics to help balance his gut and keep him healthy, however, his gut is NOT balanced nor is it healthy. We had done the last stool test a year ago and subsequently treated him for some bacteria. This year he has more strains of 'bad' bacteria present at very high levels. The lab that analyzes this stool tests the bacteria that is present against various antibiotics to see which they are resistant to and which they are sensitive to. Unfortunately, the strains of bacteria that are currently present in my little guy's system are resistant to almost all of the basic antibiotics and sensitive to a very, very strong antibiotic, Cipro. I went to the pharmacy yesterday to pick this antibiotic up and the pharmacist came to speak to me. She told me she was uncomfortable letting me administer this drug on a child as it is usually prescribed to adults.

I have a call into our doctor (at Thoughtful House in Austin, TX), but also turned to my trusty parent listservs for some advice.

What I have learned thus far is that Cipro is treated for very, very bad bacteria including anthrax. I have also heard stories from another parent like one who had to give two rounds of it to her son. (He did fine and it made a huge improvement in him)

My son has been in a decline over the past year and if these harmful bacteria are the root of the cause, clearly I want them gone...but at what risk do you do that?

I am at a bit of a loss as to the answer to that question. If anyone reading this has experience with Cipro, I'd be very interested to hear about it. And if anyone is interested in learning more about the gut flora results, I'd be happy to post them or email them to you.

If I Had A Nickel...

...for every time I said, 'M, don't touch your penis,' 'hands out,' or 'M, get your hands out of your mouth,' I'd be a kazillionaire.

Seriously, folks. We have a penis problem 'round here, and it's rather stinky.

My child is so obsessed with his unit that you will find him probably 50 minutes out of each hour with one hand down his pants and one in his mouth. Have you ever seen a horse crib? It's the ultimate endorphin-high. I think my M has started his own version of cribbing with his new habit. It's like there is some imaginary string connecting the one hand down the pants to the other hand in the mouth. The two work in cahoots with one another except when the mouth is otherwise occupied with food-eating or a therapeutic chewy.

It really stinks (no pun intended) to be grossed out by your own kid, but honestly, his hands smell awful and I can only wash them so much. The dance we do after a session on the potty is something to behold. You try helping your nearly-six-year-old get from the potty to the sink without his hands touching you. It is becoming an art, no doubt. I joked with the other half that we could add a new, disgusting jelly belly flavor to the Harry Potter collection. Have you ever tasted snot, vomit or ear wax? I'm betting 'penis' would be the worst of the lot.

All joking aside, (was I joking??), there is likely a biomedical cause beneath all of this. M has battled yeast overgrowth issues in the past and is probably dealing with one now. DAN! doctors believe that kids with autism have more of an imbalance of bacteria, yeast, etc. in their guts that can lead to a variety of 'unsavory' behaviors. They believe in healing an autistic child from within, thus lots of vitamin supplements, dietary changes, antibiotics, anti-fungals, steroids and potentially even chelation. There is not a one-size-fits-all treatment plan for our kiddos and the plan of attack is constantly changing. Blood tests, urine tests, stool tests and instinct all come into play. We finally were able to successfully get a stool sample from M a few days ago that was promptly whisked away by the blissfully unaware FedEx man to the lab. I'll report back on the findings as soon as we get them.

Meanwhile, I finally found a pair of used overalls on ebay (because NO ONE has long overalls for sale right now) that should arrive any day. We're going to see if wearing overalls with a shirt ON TOP will help curb the now-obsessive, penis-grabbing habit. Wish us luck!

Tylenol & Vaccinations

I guess I've been on a roll of reflection, self-pity and concern. So why not keep that theme alive again today?! Ha.

Before we wised up when M was three years old, we went to a pediatrician I will refer to as Dr. Chia pet. (Because her name was similar to the plant-growing wonder--not her hair!) Dr. Chia pet had been a pediatrician for many, many years and actually has a decent reputation, depending on who you talk to about it. She was one of those doctors that I never felt connected to. When M was an infant she would repeatedly call him 'she' and rarely did she even skim over our chart before entering the exam room in an attempt to fake some knowledge of us having been there before.

When a child starts going more and more to a doctor because the parent is concerned about certain behaviors or slow development, I'd like to think that's when a pediatrician should make a concerted effort to REMEMBER said patient and the patient's Mom. I just don't think that's asking too much.

During the first year of M's life I repeatedly said things to her like 'my nephew has autism, and the fact that M shakes his head, tenses his body, repeatedly says "EEEE!", and didn't roll over on time makes me worried.' Every time I spouted off a new (and very valid) concern, she would say, and I quote, 'This child does not have autism.' Interesting...
When M was still not crawling at 14 months, I would have to force her to refer us for an evaluation with early intervention. When he was not walking at 20 months I would have to again force her for a referral for private physical therapy at which time she said to me, 'I'll give you the referral for PT, but I don't think he needs one for speech.' (And yes, two months later we were in speech therapy, and M at five years old still does not speak conversationally)

And so we arrive at the purpose of this post: tylenol and vaccinations. As a first time Mom I was always reading Babycenter and naturally listening to any 'tips' my doctor could give me. One such tip was to give tylenol 30 minutes prior to vaccinations being administered so that your child wouldn't have the 'annoying' fever and side effects that may have followed. Since M had reacted in such a way on several occasions before, I was all for trying to alleviate any discomfort for my sweet baby. When I'd proudly tell Dr. Chia Pet that I'd given M tylenol before the shots, she always told me that was a great idea. Really, she did.

Well, today I understand a lot more about tylenol and its effect on the body. Don't get me wrong, I still use tylenol, but I prefer motrin for my little guys. Please remember I am most certainly not a doctor nor do I claim to be explaining this process in perfect medical terms, but tylenol blocks the body's natural production of something called glutathione. Glutathione is a really important thing that aids our bodies to naturally pass or process toxins. Make no mistake, even though vaccinations are beneficial, they are also TOXINS.

So by giving M tylenol before each and every toxic dose, I was essentially blocking his ability to process the vaccines in a healthy manner. Did I cause my child's autism? Well, maybe I did. (Insert expletives and desire to become sick to my stomach here) And this is why I always tell people who ask me about the vaccine debate that we weren't one of the cases that you hear about happening as a result of the MMR vaccination; we had delays and red flag behaviors that occurred from very early on. However, I do NOT discount the fact that vaccinations could have been one of the things that spurred M's autism since he started getting vaccinations at only five days old. I believe in the power of medicine, but I also believe that we need to focus not so much on discrediting those who believe vaccinations caused autism, but instead on developing tests for newborns that can determine whether or not they have certain genetic markers for disease. This way, parents can make more educated decisions about whether to delay, space out, or forgo vaccinations altogether for their children. And for sure, so they'll know NOT to give a child with a predisposition any tylenol before being vaccinated.

You're going to start reading more and more about mitochondrial and metabolic diseases and their relation to autism. These things are already being noticed as potential underlying causes to autism and other developmental disabilities. I am very hopeful that the pioneers in autism research are able to keep searching for, and hopefully pin down, the true cause(s) of autism soon so that we can stop this growing epidemic. It is not going to be easy. There are a lot of interests involved in this debate, many of which do not have our children's health as their highest priority.

In the meantime...I would urge you to not give your child tylenol before or after vaccines. Go with motrin instead. I don't want anyone else to worry that they, the parent who gave life to their beautiful child, may also have caused their child a lifelong disability.

Recipe

-800 mcg Folic Acid
-1000 mg GABA
-150 mg Magnesium Citrate
-40 mg Zinc Picolinate
-1 Probiotic
-Nasty-tasting Multi-vitamin powder
-Methyl B-12 injection every three days

Add above ingredients (aside from the injection) to non-milk drink and stir. Try not to think about how much money the supplements cost and whether or not your child is actually getting all of them into his system via this mode. Make a note to yourself that it really would be a good idea to teach him how to swallow pills.

Do not add ANYTHING to his diet that includes gluten (wheat, barley, oats, etc.) or casein (milk/dairy, whey).

And this...is what your little boy is made of.