Gryffin's Tail

2012-01-21T03:07:00.001-08:00

Gryffin's Tail

» Baby Dies After 9 Vaccines in One Day

Posted: 20 Jan 2012 07:13 PM PST

» Baby Dies After 9 Vaccines in One Day Alex Jones’ Infowars: There’s a war on for your mind!.

Absolutely insane.

Fan-freaking-tastic. Really, you’ll love this.

Posted: 20 Jan 2012 04:54 PM PST

NYT: New autism definition may exclude many – TODAY Health – TODAY.com.

"The proposed changes would put an end to the autism epidemic," said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. "We would nip it in the bud — think of it that way."

Yup. Since we can’t make those pesky numbers go down as we continue to add those vaccines (hi flu shot to pregnant women, hello Gardasil!), we’ll just change the criteria and voila! No more ridiculous autism numbers climbing every year! We just knocked it back to 1:5000. Guess there isn’t an epidemic after all.

Or wait, try this one on:

Well, we don’t actually want to put any effort into studying things that actually help those with autism so we’ll just make it harder to diagnose people with it. Those crazy moms and dads out there that actually believe they are recovering their kids, well, they never had autism to begin with. See how that works? They actually had Social Communication Disorder. Yeah, we just made that one up for the new DSM, we thought you might like it. *pats themselves on the back* We wanted to make sure we could pull a lot of people out of the autism group and get those numbers down that way, too. Yanno, since we don’t want to do anything and all. Those of you with Asperger’s, good luck getting reevaluated and getting that autism diagnosis and for those with PDD/NOS…you already knew that was the diagnosis stupid doctors gave when they didn’t want to commit to autism because “he’s just a boy, they talk later” or “she’ll catch up with time” or “it’s just a phase” or “autism is not a good diagnosis, you don’t want that ~~and it’ll keep us from having to give you as many services too.~~“ Yeah, you’ll never get that autism diagnosis.

And now we will have a severity scale so we can tell you exactly how impaired you are because you don’t know any better. So what if you can’t shower without being prompted or feel hunger? We’ll make you write notes to yourself and maybe you’ll remember to read them as they hang on the refrigerator of your, oh wait, we also took away your group home so you don’t have a refrigerator or walls in a dorm room to hang those notes. Sorry! We have to take your aide away too! I hope your parents are alive and able to take you in. Maybe you have an aunt or uncle? Distant cousin? Because you don’t get medicare or disability anymore, either.

See? It’s not really an epidemic! Because we just knocked those numbers back down and it’s all good now. No more autism. Because changing the criteria made them all go away. Poof.

And they call us crazy for doing things like giving them a gluten/casein free diet or some other such off the wall wackiness. Good lord, how could they deprive their kids of Wonder Bread?

How much more, exactly, does the AMA, APA and CDC have to do before people realize we aren’t that crazy?

**Don’t be surprised in a couple years when Social Communication Disorder is miraculously 1:90 with no services available.

Gryffin's Tail

2012-01-20T03:04:00.001-08:00

Gryffin's Tail

Apple Unveils iBooks 2 and iBooks Author, New E-Book Creation Software

Posted: 19 Jan 2012 08:28 AM PST

Apple Unveils iBooks 2 and iBooks Author, New E-Book Creation Software.

My son’s self portrait

2011-11-12T21:01:00.001-08:00

Low levels of zinc linked with autism in children

2011-11-06T08:56:00.000-08:00

via Low levels of zinc linked with autism in children | Mail Online.

Interesting that they say that nothing should be concluded from this. What about concluding that it's worth testing to see if your asd kid has low zinc? Gasp! What an outrageous thought. How very unseemly to be so forward thinking. You should very well let your children run around with low zinc because low zinc is completely unimportant. As a matter of fact, just stop giving all kids a daily multi-vitamin because we don't them. Nutrition means nothing. There's nothing to see here, move along!

Is it really so hard to just say, well, maybe we should look into this? Why is there such a strong need to discredit anything that might support what the crazy autism moms have been saying for decades? Chew on that question for a while.

I think I'm going to start a category of all the stupid shit the media/governments/organizations/etc. say and do to try to prove themselves right while doing their damnedest to make us look bad.

Hypocrites and idiots. Perfect name for it. Look for it on the right.

Took the plunge

2011-10-24T16:06:00.001-07:00

We've done mostly everything biomed and after 5 years, we have come to a point where life has to improve for everyone in the family. My son doesn't really have hyperactivity issues but has severe focus issues. His ADD has really come in the way of his own confidence and our enjoyment of each others' company. I'm always yelling at him and he's always too distracted to care and it always ends in tears. No fun for him and makes me feel like the worst mommy ever. It's really not pretty.

He knows he can't concentrate and it hurts him so much. He doesn't understand why he can't think like everyone else and he always feels like a failure. Unbeknownst to me, the first week of school his teacher asked the class to set goals. His goal was not to make good grades, make lots of friends or even be the line leader. His goal was to concentrate better. Talk about a heart-breaker.

We picked up the Ritalin on Friday. We went to our ped for it since my DAN doesn't generally do stimulants. Our ped started him Ritalin but he likely will not stay on it. It's the oldest and most well known drug and he wanted to start with something they know the best. For the first month, he stays on normal Ritalin (not slow release) because it clears the system fast and if he does have a reaction, we want it out as soon as possible. So for the first week, we just stick with 2x a day of 5mg each. We watch and report back to the doc a week later. Then we'll adjust the dose again and titrate up as we feel necessary to get to the right dose. Once we get there, we'll consider going to long acting and possibly a newer drug that maybe has fewer side effects.

Since we started Saturday, I've noticed that he doesn't sleep very well and has very hard time falling asleep. He already gets 1mg of melatonin at night. I'll be upping his dose to 3 mg and see if that helps. It is a side effect of stimulants.

Today was his first day of school on ritalin and his teacher noticed a huge improvement. She said she knew just by looking at his handwriting that he had started (I hadn't told her but she was aware it would happen).

I never wanted to go to meds but biomed just never made a difference. I would never recommend someone try meds first before biomed but for those of us that have done our due diligence, I'm all for doing what works. I resisted long enough. I've known enough ADHD people personally that have told me how medication has made all the difference in the world for them. How they finally felt normal. I can't and won't deny my son that chance. I put it off as long as I could because I just never felt comfortable putting him on it so young (especially after a Dr. put him on antidepressants when he was 3 to disastrous effects).

Now he's 8, I'm still not happy about it but I feel like it's really the only thing left for me to do. I might end up regretting the decision but I can't tell you how easy homework was today. He's outside playing right now because he got done with his homework faster than ever and not a single instance of yelling. There was actually quite a bit of humor involved as he came up to me as "Paper Head." He put his homework in front of his face and walked around with it until I checked it. Laughing during homework time with him has always been rare.

We call it his "thinking medicine" since it's to help him think better. Today I struggled with my NT son and his homework and my ASD son said NT son needed some of his thinking medicine. ;)

So for any of you struggling with the decision after years of biomed, don't beat yourself up if you go there. My son is recovered from autism through biomed. His ADD has only gotten worse. Maybe with this, life will be typical for him and that's really what all of us want.

Antiviral drugs may slow Alzheimer’s progression (The University of Manchester)

2011-10-17T15:53:00.000-07:00

Antiviral drugs may slow Alzheimer’s progression (The University of Manchester):

'via Blog this'

Scientists fear MMR link to autism | Mail Online

2011-09-24T07:11:00.000-07:00

Scientists fear MMR link to autism | Mail Online:

'via Blog this'

All the tests that folks talk about

2011-09-19T09:18:00.000-07:00

All the tests that folks talk about « Gryffin's Tail:

This was from a conversation on a list.

Great answer Cheryl. Do you have a blog entry on this? Would be a nice addition if not.

(redacted)

On daily basis, there are many tests are talked about on this mailing list and since I am a beginner with all biomed, everything sounds to me like alien. I find all this information super overwhelming and takes time to digest everything.

So here goes my questions -
- All the tests that anyone talks about, are they all suggested and ordered but you (DAN!) doctor?

Any MD/DO can order any of the labs. Some you can order yourself

- Do you need special lab to do these tests or regular labs do these tests?

I rarely use a specialty lab. Great Plains and Doctors Data take insurance, though. I think of the specialty labs, the most important one is the CSA and OAT. Not all of the information is reliable but it's defnitely helpful.

- How often these tests are covered by the insurance? (of course, it depends on the insurance but if you have a 'good' insurance, like we have Oxford)

The only test that I've found not to be covered is food allergy testing. IgG testing just isn't mainstream enough. But only if the lab you see takes your insurance. I do believe you can self submit to your insurance if the lab doesn't take it but it will be at a lower rate.

Other labs, like the non-specialty labs are usually all covered by your plan but definitely still depends on how good your coverage is.

- Is there any comprehensive list of tests somewhere up on the net those can be performed for testing and treating our kids with the explanation i.e. what this test is for and what the result means? So that I can read up on that before I approach any doctor.

Oi. That's a lot of possible tests. But the ones to start with would be a **CSA (comp. stool analysis) and **OAT (organic acid test). **Food allergy (or you could do a food journal instead... but if you don't, Alletess has one for $89 that you can have your doc sign off on if willing.) --these 3 are not, imo, something you need to do often.

But a good place to start for a newbie to get some baselines.

viral titers: HHV1-6, any vaccine titers you want,

AntiDnase and ASO titers (PANDAS),

Ig and all subclasses,

CBC + CMP,

T&B lymph/NK cells,

homocysteine

Things to consider at some point:

**Urine Amino Acid (specialty lab - I don't think it's that important but if you have proten issues, could be better than nothing.)

thyroid

cortisol

other hormones (pregnenelone, progesterone, testosterone, IGF-1)

Vitamin D (bet you money you're low! ;) )

other vitamins and minerals (ferritin, zinc, copper, etc)

**hair metals test through GPL/DDI(or Labbio urinary porphyrins if you prefer to consider IV chelation - we do AC so hair test only - and not expensive if not covered by insurance)

**Yasko genetics test ($500/one time deal specialty lab not covered by insurance and nothing comparable in regular labs but I do believe you can get *some* of the genes through a regular lab. I think Toni might be able to tell you which ones. These are all metabolic genes.)

Toxoplasmosis

Mycoplasma

Lyme - you can get the Western Blot through a local lab but it's not as sensitive as a specialty lab (**Igenex) which is not covered by insurance. What makes this specialty lab special is that it actually gives you parasite information for all of them and more band information. Western blot I believe only test for borrelia and the other major one that I can't think of right now. The lyme parents can give better info on it than I can. It's expensive, I think it's $1800.

I marked all the specialty lab tests with a ** and really, they aren't that many and not stuff you need to do all at once or too soon. You could easily break them up if you choose to do them.

As for how to read them...that's steak, not popcorn*. The specialty labs will have explanations and nice little KISS charts that tell you exactly what's going on with an explanation attached. They aren't fully explained well but it's a start.

The regular labs, well...it's hard to tell a mainstream doctor that most people are low in vitamin D to even get one to test it (which I find funny that they say most people are *not* low in it but will never test anyone to know that!) And GPs tend to not understand half of the labs that cross them anyway. Any mainstream endocrinologist will tell you that the lab reference ranges for thyroid are too wide and where most GPs tell you it's fine because it's in range, an endocrinologist will tell you that you need thyroid. Soooo, how to read them is a loaded question. High viral titers a mainstream doctor will tell you that it just means you've been exposed. They don't take anything else into consideration. It's an impossible question to answer, unfortunately.

*For an explanation, click here. I shamelessly stole it from Patrick Rothfuss. He rocks. Buy his books, they also rock.

Children with autism and gastrointestinal symptoms have altered digestive genes

2011-09-19T08:44:00.000-07:00

Children with autism and gastrointestinal symptoms have altered digestive genes:

'via Blog this'

Vaccination's vexed link to autism

2011-09-15T11:53:00.000-07:00

Nice, calm article from someone that doesn't have a vested interest.

Vaccination's vexed link to autism:

'via Blog this'

Yay, UC DAVIS MIND Institute! I <3 you.

2011-09-09T12:29:00.001-07:00

Of course, this is not news to us biomed families but if just one thing could bring us some vindication for being called whack jobs, HERE IT IS. This is where we need to be looking to see why biomed helps some and not others. This is where we need to be looking to figure out where to start with our kids, who should start where in biomed and how it should be done. This is where we start looking to come up with an actual diagnostic effort and acceptable protocols for mainstream acceptance. This is where we stop guessing and start proving.

Does anyone else find it telling that it's an article from Australia and not the US?

US researchers' discovery promises answers on autism

RESEARCHERS have for the first time identified two biologically different strains of autism in a major breakthrough being compared with the discovery of different forms of cancer in the 1960s.

Read the full article here.

After you read the article, come back and tell me in the comments what kind of autism you suspect/know your child has.

My son has immune and hormone dysfunction. It's likely the hormone dysfunction is a result of the immune dysfunction but hey, that might be digging a bit too deep for the uninitiated. Let's keep it simple for now.

What about you?

Should we even try to recover our kids?

2011-08-18T22:32:00.000-07:00

I know, I promised a post on recovery and what it means but I got sidetracked and offer you this instead, which is sorta-kinda the same thing. But not. I still plan to post one on recovery, though. Pinky promise.
In response to Jim C. Hines' review of The Speed of Dark, I'm posting this here because what I have to say really isn't appropriate for his blog comments. I also thought that maybe some of my readers have read the book and might have something to add and would want to go to his blog to comment. I haven't actually read the book so this is really in response to the question he poses:should we "cure" those with autism? There was a little more to it, and I'm not even going to touch the high vs. low functioning topic today, but that's the basic question.

As someone that has a son that is mostly recovered from autism, it's not something that I can understand as being something that changes one's life to the degree that this kind of moral question asks. The book may be showing a "cure" in a different angle than real life, but in reality, there is already help. Not enough help, but some.

In real life, recovery is not a cure because autism is not a mental disorder that needs curing (something the NDers and biomed parents can all agree upon, but that's as far as the agreement goes). It's a bunch of biological inconsistencies and malfunctions that end up creating neurological symptoms. In some people, these symptoms can't be corrected because the underlying condition can't be corrected or found. I would venture to add that it's not for lack of trying. Each child is unique in their issues. There are no two children with autism that present exactly the same way. But with thousands of kids recovering from autism every year, it's hard to imagine that western medicine is right. A lot of people can be helped, and without the use of antipsychotics or antidepressants.

The real question is: what's really going on with our kids? Why does the diet work for some and not for others? Why is it that treatments for other chronic illnesses, like CFS or Lyme or any of the other many things biomed parents and practitioners generally discuss, work on our kids, too? Has anyone ever noticed that even some people with depression seem to recover through biomed? Why has no one in traditional western medicine noticed the pattern? Or maybe they have and just refuse to acknowledge or explore it? Okay, so that's way more than one question. You get my drift.

Not all kids can be treated the same. What works for one doesn't necessarily work for another. It boils down to this: different biological issues for different children (and adults). But they all produce neurological symptoms.

Is it fair to expect that a child that has nothing but diarrhea doesn't have something wrong with his/her bowels? They call it "normal" in autism instead of asking why. Prevacid is what you get. This is only one of may examples of what plagues these children. Sensitivity to sound. Why is it that when you treat a child for PANDAS, this sensitivity goes away? The OCD goes away? Why is it that when another child is treated for lyme, that child becomes completely and totally recovered?

Because there are really still very few cases of autism. It's still as rare as it's ever been, if it's ever been at all.
Recovery doesn't change who a person is. It gives them the chance to live life the way they want. Being able to not live life with an aching stomach doesn't change the core of a person. It just means their stomach doesn't hurt. Which in the case of developing children, many times means they can sleep better, eat better and focus better. Which amazingly enough, means they function better. Whoda thunk?

So is the question really about changing the core of a person with autism or is it about healing the medical problems they have? A person who thinks in pictures is still going to think in pictures. Having a healthy body isn't going to change that. A savant isn't going to suddenly stop being a savant because their vitamin deficiency was treated and they stopped scripting Thomas the Tank Engine.

My son went from moderate/severe autism to pretty much typical (I always say "pretty much" or "mostly" because he still has raging ADD - we're working on it) and not once did it change him as a person - except when I gave him antidepressants but that's another post. He is still the same lovable, caring and funny little boy he always has been. He's thrived and become so much more. And he's able to tell me exactly how what few issues he has left bothers him and makes him hate himself and frustrates him. I'm not going to lay down and allow him to grow up hating himself and then deciding he has to accept that this is him and he doesn't need to change, all the while silently hating every minute of his life - nor will I let someone else convince him of that.

No matter what, he'll be happy with who he is and I'll encourage him and love him and teach him to love himself, but that doesn't mean I won't strive to help him become who he wants to become.

There's a reason why autistic adults have a high suicide rate. If it's hard for neurotypical people to watch and be around, if it's hard for a mother to watch her son struggle, it's 100 times harder to be the autistic person. Everyone wants to be happy and comfortable with who they are, including those with ASD.

Now, this whole argument is probably geared more toward the management of symptoms with antipsychotics, antidepressants and the like and I've kind of hijacked it for biomed. But that's what happens when the argument is so vague. Could mean traditional medicine, could mean biomed. I dunno. And maybe those drugs do change a person. Like I said earlier, when I gave my son antidepressants, they definitely changed him. He was, quite literally, psychotic. At best, they are only meant to manage symptoms, and they do a very poor job of it. Still, some people do very well on them. I can't argue with that.

But the recovery I'm talking about, the recovery us "crazy moms" are talking about, doesn't change a person. It doesn't change the way a person thinks or views life.

Wait. I'm wrong. It does change people. It makes them feel normal. Or maybe a better way to say it is not that they feel normal, for what is normal anyway, but that they no longer feel abnormal. It takes away the pain they aren't supposed to have. Being in pain (physically or emotionally) doesn't make a person special or unique. It just makes them in pain. To go through life needing to bang your head against a wall long after the bleeding started, is that really something you want to keep?

Packing up and moving

2011-08-05T10:47:00.001-07:00

[category This and That}

[tag This and That]

[publicize off]

I've decided to take the plunge and move my blog to Wordpress. Eventually I will be setting up an actual website with my very own domain name that will house my blog and Wordpress is just better for that. And I still get complaints of how blogger is working out. Or rather, not working out, for readers.

What does this mean for you, dear reader? Not much. You can continue to stay right where you are if you are happy with your subscription just the way it is. I will continue to mirror the feed on Blogger because I'm just sweet like that. I don't want to disrupt anyone's happy feeling and it isn't any skin off my back to continue mirroring here. But you may have to deal with seeing shortcodes at the beginning of every post. In order to mirror, I have to email all my posts. I haven't managed to figure out any other way to do it after extensive googling. (I wonder if I can put them at the end? I'll have to try a test of that.)

But for those that are unhappy with Blogger or are irritated by the way the page doesn't seem to load correctly for so many of you, there is an alternative. You can now also find Gryffin's Tail here. I can't make it as feature rich because I'm not self-hosting it yet but maybe someday.

This is actually my first test run on seeing how well emailing all my posts work out. Wish me luck! If all goes well, I shall continue on to focusing on plain old blogging and will get the recovery post up as soon as I can.

Summer reflections

2011-07-29T10:38:00.000-07:00

As the summer break comes to an end, I find myself reflecting on how it went.

It's definitely been enlightening. My mostly recovered son didn't behave so mostly recovered while I was on vacation. As a matter of fact, he definitely had me worried for a second that I had accepted recovery as a fact a bit too soon.

Then I remembered.

Oh yeah.

I tried to stop the Valtrex again. Epic fail.

If anyone has ever had any doubt that autism is a poorly functioning biological system, all they'd have to do is take my son for a week or two and stop giving him antivirals. The difference is that big. Even in recovery he still has major ADHD issues. Having to deal with both the ADHD and autism can just be exhausting.

Got back on it and he's mostly back to normal. It will probably take until school starts to get him back to where he was.

Which brings me to another thought. My sil said something to me while I was visiting that made me realize I probably need to do a post on recovery and what it means. We were discussing water and how good Gryffin was around it and in it. And that moved on to how many children with autism drown because they have no concept of danger or drowning, or some don't feel pain or whatever it is that leads a child with autism to jump into water and drown. I told her water was still a concern for me even though I knew he was safe around water. Old habits.

She couldn't understand why I'd still be worried. She said, "But I thought you said he was recovered?"

And that's when I realized that recovery is very misunderstood. My sil is no fool. She's one smart cookie. She owns and runs a learning lab where she teaches struggling kids how to process information better and she's had ASD students. So this wasn't something I would've thought she would misunderstand. What I failed to realize is: why wouldn't she? She doesn't live with it everyday. She doesn't treat it. She doesn't research it and it doesn't engulf her life. She may not have even heard of recovery until the moment I first told her Gryffin was mostly recovered (yes, I always say "mostly recovered"). My expectation that people (anyone, not just my sil) know what I mean when I say recovered is completely unrealistic and unfair on my part.

A child recovered from autism is not necessarily issue free. Like a child with asthma, they live a mostly normal life if they have an inhaler.

So I really need to write a post on what recovery means. All the different forms and variations and how it's perceived. I'm going to post that sometime in the next week.

School is closing in on us and I feel like I haven't really had a summer. My NT son had his tonsils/adenoids removed right when we got back from vacation and that kept us homebound for a while. I wanted to do some more chelating this summer and never got around to it. Especially since I had to get Gryffin back on track with his antiviral. This summer seems to have just completely gotten away from me.

Pfffft.

At least we had some fun, though. We spent time visiting with our families and friends, something we just don't get to do enough.

2 studies connects vaccines to SIDS - 1 old and 1 new

2011-06-05T07:27:00.000-07:00

Here's a great article to help put these into perspective: New study proving vaccines can kill children.

Infant mortality rates regressed against number of vaccine doses routinely given: Is there a biochemical or synergistic toxicity?

Neil Z Miller neilzmiller@gmail.com
1. Independent researcher, Santa Fe, New Mexico, USA

Gary S Goldman
1. Independent computer scientist, Pearblossom, California, USA

Abstract

The infant mortality rate (IMR) is one of the most important indicators of the socio-economic well-being and public health conditions of a country. The US childhood immunization schedule specifies 26 vaccine doses for infants aged less than 1 year—the most in the world—yet 33 nations have lower IMRs. Using linear regression, the immunization schedules of these 34 nations were examined and a correlation coefficient of r = 0.70 (p < 0.0001) was found between IMRs and the number of vaccine doses routinely given to infants. Nations were also grouped into five different vaccine dose ranges: 12–14, 15–17, 18–20, 21–23, and 24–26. The mean IMRs of all nations within each group were then calculated. Linear regression analysis of unweighted mean IMRs showed a high statistically significant correlation between increasing number of vaccine doses and increasing infant mortality rates, with r = 0.992 (p = 0.0009). Using the Tukey-Kramer test, statistically significant differences in mean IMRs were found between nations giving 12–14 vaccine doses and those giving 21–23, and 24–26 doses. A closer inspection of correlations between vaccine doses, biochemical or synergistic toxicity, and IMRs is essential.

This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Pediatr Infect Dis. 1983 Jan-Feb;2(1):7-11.

Possible temporal association between diphtheria-tetanus toxoid-pertussis vaccination and sudden infant death syndrome.

Baraff LJ, Ablon WJ, Weiss RC.

Abstract

Because diphtheria and tetanus toxoids pertussis (DTP) vaccine is routinely given during the period of highest incidence of sudden infant death syndrome (SIDS), this study was undertaken to determine if there is a temporal association between DTP immunization and SIDS. Parents of 145 SIDS victims who died in Los Angeles County between January 1, 1979, and August 23, 1980, were contacted and interviewed regarding their child's recent immunization history. Fifty-three had received a DTP immunization. Of these 53, 27 had received a DTP immunization within 28 days of death. Six SIDS deaths occurred within 24 hours and 17 occurred within 1 week of DTP immunization. These SIDS deaths were significantly more than expected were there no association between DTP immunization and SIDS. An additional 46 infants had a physician/clinic visit without DTP immunization prior to death. Forty of these infants died within 28 days of this visit, seven on the third day and 22 within the first week following the visit. These deaths were also significantly more than expected. These data suggest a temporal association between DTP immunization, physician visits without DTP immunization and SIDS.

PMID:: 6835859; [PubMed - indexed for MEDLINE]

Blogger has gone nuts

2011-05-13T19:48:00.000-07:00

So whatever craziness is happening, I can't stop it. Blogger has been doing some upkeep and it's affecting all the blogs.

I apologize right now for any weirdness. I know it sent out posts from several different days in last month as if they were all new. Sorry guys. I hope they work it out soon.

Biomed book: Food Diary

2011-05-11T15:40:00.000-07:00

I have a new page for you to add into your biomed book! Woot woot!

Okay, so maybe it's not that exciting.

I was asked how to handle food, not just supplements. So here it is:

You can find it here.

Keep in mind that you can modify this easily. All of my pages were created in Word or Excel because, well, I had no idea I'd be sharing them when I made them. If I had, I would have made them in Adobe InDesign and they'd be hot pieces of graphic design genius. Okay, so maybe not genius but they'd definitely be hot.

Since I now don't have the time or the inclination to create such genius, utilitarian will have to do.

For the technically challenged, if you need more room, just change the page size to legal and then pull the square on the bottom right of the table box and enlarge the table to fit. Voila, more room.

Autism doesn't exist

2011-05-11T14:46:00.000-07:00

I had a question from a friend with no spawn of his own today. That question was: what do you mean your child is recovered? I thought it was lifelong?

Well, not really. Some do. But hopefully this can help people understand what it means to have autism. It's a great way to get a good overview of why biomedical interventions exist and why/how they help.

More on what we already know

2011-05-11T14:32:00.000-07:00

New Study Suggests Link Between Vaccines and Autism

Vaccine-autism link: New investigation

Sample page for the biomed book

2011-05-10T20:42:00.000-07:00

I was asked to post an example of how I used the Adding/Removing page. Here it is:

I said it in red but I think it's worth saying again - use it in a way that will work for you. Make changes if you need to.

A Review of Compensated Cases of Vaccine-Induced Brain Injury

2011-05-10T12:56:00.000-07:00

You have no idea how bad I want to just post the whole thing here. Seriously. Just like I did when I first started this blog and contributed to the ruination of the internet with my lack of netiquette. But since I'm not ruining the internet anymore, I can only say: must read!

AoA has the Executive Summary here.

Check it out. Good stuff.

Another new look

2011-05-08T21:41:00.000-07:00

You might have noticed the new clothes. I know, it seems like I just got new clothes and yet here we are, changed again.

I really don't plan to change it up often and I'm sorry if it has been jolting. You see, this time I had to do it. Blogger has updated their interface and the old template, which I very much liked, wasn't working with the new blogger. I'm saddened by it but I must move on if I want my blog to be readable. That whole "everything in Georgia italics" thing was a bit hard on the eyes.

Anyway, hope you like the new look!

I'm sorry. Excuse me. Pardon me. My apologies.

2011-05-03T11:43:00.000-07:00

I know some people believe that forced apologies are insincere. I've heard it over and over again and while I understand the fundamentals of the belief, it doesn't change the fact that we should apologize when our children can't.

Some of you are probably wondering what I've been smoking to say something like that. The truth is, if parents didn't care about what others thought of their child, they wouldn't have behavioral therapy. They wouldn't care about social skills and focus on life skills, educational skills, and vocational skills. But that's not true for most. We want our kids to have friends in school. We want them to make friends as adults. We want them to have girlfriends and boyfriends, husbands and wives. We want them to have children. We don't want them to be social pariahs.

Honestly, how many apologies do people make that are sincere? Not many. Every person we bump into with a rushed, "excuse me" or "I'm sorry" isn't steeped in genuine remorse and guilt. And rarely are people as emphatically remorseful as they sometimes make it sound.

Yes, there are some things we do that keep us up at night because we feel so badly about them. But not many. Most things are forgotten about within five minutes.

Does that mean we shouldn't apologize? No.

Apologies are a social construct. It's a display of politeness. It's a social skill. We can't teach our children social skills by excluding the apology unless they mean it, especially when they are likely to be even less remorseful than a typical child because logically, why should they apologize for something they didn't know? They should do it for the same reason you get a ticket for speeding in a residential area when there is no posted speed limit. Not knowing doesn't excuse the behavior. Everyone knows it's twenty-five mph in a residential area, posted or not.

It's not about whether or not they have autism. Austism might be why they don't understand that biting is inappropriate, but that still doesn't excuse the behavior. The majority are able to learn. Having a consequence for biting is something I'm sure most parents have, but they don't always make their kids apologize or apologize for them. This is a mistake. If the child were typical, the likelihood of a forced apology is much greater. Don't let autism be an excuse. It's not. The whole point of behavioral therapy is to teach them what is acceptable behavior and what isn't.

Apologies aren't meant to always be sincere. Remember - it's a social construct. It's about being polite. Acknowledging that something occurred. Having a consequence to hitting a child isn't the same as having a consequence and making the hitter acknowledge that hitting is wrong. Apologizing makes a person internalize what happened as being offensive as opposed to just suffering through a time-out because mom's pissed. This occurs even on a subconscious level. This is how we learn expected behavior.

One could say that apologizing is only meant to shame the offender and well, yes. That's true. Get ready for the obvious...because it's meant to teach social skills and right from wrong. But a person can only feel as much shame as they allow. Through good and bad acts, rewards, punishments and apologies and praise, we learn to put that "price tag" on our acts.

How much shame does one feel when they apologize for bumping into someone? None. How much shame does a person feel when they steal someone's husband? Probably a whole lot. Because doing bad things in the past have taught us the degrees to which we should feel shame and apologies are a part of that.

I'm sorry (see, another insincere apology but socially it's expected because I'm expressing an alternate view than others and hopefully doing so in an inoffensive way - that's always debatable with me but I digress), but apologies are a part of life. They are a part of learning appropriate social behavior. If typical behavior is what a parent wants their child to learn, teach that child to apologize because more people expect it than don't. By not teaching them to apologize whether they mean it or not, parents are setting their kids up to be ridiculed and hated for being a rude and pompous ass by their peers in the future. I don't think that's what parents want for their kids.

Whether or not a personal belief is to like or dislike the insincere apology, until insincere apologies are passe in society as a whole, give your child all the tools they need to succeed in the society as it is today. They are already starting behind the eight ball, why make it harder?

Some personal thoughts on ADHD and stimulant meds

2011-04-15T11:58:00.000-07:00

I've been doing things all these years to try to alleviate the ADHD with little success. Things are only marginally better with biomed. I haven't tried everything - I'm calling my doc to see if we can try hydergine (he's already on 2 other non-Rx nootropics but I've read that hydergine in combo with other nootropics is like night and day). I've been doing biomed for over 4 years and haven't made any headway with it so I've decided that if I can't take care of it without stimulants then I will try them when he gets to the grade where grades matter which is, I think the 4th grade. I have a couple years still to work on it.

In many ways, I feel like autism masked his ADHD. As he recovered from autism, his ADHD just got worse. Like we had been able to blame the autism for so much until the autism wasn't there to blame anymore.

I admit to sometimes wondering if I'm just doing him a disservice by continuing to wait. If you know anything about ADHD, language issues are quite common and his pragmatics just aren't great - something I used to attribute to autism until I learned how prevalent it is in ADHD and realized that is the last of his autism I needed to get out that is just a toughy. Getting him to speak was easy. Getting him to speak and comprehend at least somewhat close to typical, totally different... I often wonder if these would solve his problem and he wouldn't have to play catch up so hard.

Speaking to others with ADHD and having them tell me that the first time they started their ADHD med they finally felt normal really makes an impact. Hearing them tell me how the world finally righted itself and everything made sense because of their meds does give me great pause.

I dunno what the answer is. Part of me is just too chicken to even give the meds after doing biomed for so long. I don't want to put something like stimulants into him not knowing what the long term effects are. Another part of me feels like I'd just be a huge hypocrite if I gave them, I used to be one of those people that thought stimulants were a crutch of bad parenting. If I just find the right biomed combination, the right key, find the root of what's happening... And then another part of me feels like I could be giving him something right now that could potentially make it all go away and I'm not; and wondering just how bad of a mom that makes me.

It's a daily struggle to know what the right thing is. I do feel like he's just too young to be taking stimulants and that's my main driving force behind doing everything I can before going to meds. I don't have a lot of confidence that I can avoid that, though. From my answers on the Connors test, wow. He's got it bad.

From autism to ADHD

2011-04-12T21:23:00.000-07:00

My son's triennial assessment is going on right now and I just filled out an interesting parent form. One I haven't seen before but knew instantly what it was when I read the questions. ADHD questionnaire. I searched for the name of the test and found it on the side margin, Connors 3.

In so many ways, this is good news (so far). It looks like it means they no longer think he has autism (yay, me! I worked hard to get it that way!) but now they want to assess for ADHD.

To be honest, they could've just asked me and saved us all the time. Yes. There ya go, no need for a questionnaire. In everything I've done, I've managed to deal with the autism but the ADHD is still such a huge problem. I'm not sure what more I can do.

Gryffin had a diagnosis of moderate to severe autism and to see the autism fade has been more than I could've ever dreamed but sometimes I look at the ADHD issues and think it's harder to crack than autism ever thought it could be.

Who knows, maybe we'll have our IEP and instead of saying they don't think he has autism, they'll say they think he has autism and ADHD. That ought to be a riot since the autism diagnosis specifically excludes any other diagnosis as part of the condition.

But I don't think that'll happen. When I see Gryffin, I see ADHD, not autism.

Sheesh. It's hard to even think about it right now.

New page for the biomed book!

2011-04-12T16:40:00.000-07:00

I didn't upload a page for the biomed book by accident. What was I thinking?

Here it is. It's specifically for when you add new supps/med or therapies to keep track of what's going on. It's very basic but it works.

I'll also update the original post with the new page.

Dr. Helen V. Ratajczak and vaccines

2011-04-12T16:34:00.000-07:00

There's an article in The Journal of Immunotoxicology causing quite a stir, to which I say, good. We need a stir. Dr. Helen V. Ratajczak wrote a compelling article that I hope you will give a good read to, it's worth the time.

You can download the full article here. Just one more study we can point to that everyone will likely ignore, unfortunately. I know, it's rather cynical but I've been on this road too long to wait for miracles.

Toxic baby food: is anyone really surprised?

2011-04-10T19:24:00.000-07:00

Seriously, I'll never understand why this is okay? It's one thing to get toxins naturally from food - some foods contain toxins - but this is baby food. BABY FOOD. We're not talking about getting amounts of cyanide from eating bamboo shoots because it's naturally present in bamboo.

These are toxins introduced to our foods - and our babies. I'll never understand it.

Arsenic and toxic metals found in baby food

Baby foods used to wean infants off milk have been found to contain "alarming" levels of toxic contaminants including arsenic, lead and cadmium.

Read the rest here.

XMRV and autism

2011-04-10T19:12:00.000-07:00

I've been of the opinion that XMRV is going to be hugely important since we found out about it. Kent Heckenlively does a fantastic job of breaking it down.

The Potential Importance of the XMRV Retrovirus to Autism

By Kent Heckenlively, Esq.

Although I’ve been a science teacher for the past five years I find that when I’m confronted with new information I want to explain to people I fall back on the strategies I used during the fifteen years I was a lawyer. I hope you'll consider this article in that light, as essentially an opening statement.

Read the rest here on AoA.

New way to subscribe!

2011-04-08T19:10:00.000-07:00

If you look to the right, you'll see that there is now a way to subscribe via e-mail. Hope that helps those that haven't been able to subscribe before!

The biomed book and how to make one.

2011-04-08T12:32:00.000-07:00

As a biomed parent, you have to be organized. If you aren't organized, you don't know what's going on. And if there's one thing you want to know, it's what's going on.

You must take notes. Copious notes. I've mentioned this before here. Let me say it again - take lots and lots of notes. Know what's doing what, what is doing nothing and what it interacts or works well with. Know what your kids symptoms are for yeast, bacteria, ammonia, phenols, etc.

You don't know these things without notes.

I keep a Biomed Book. It's got dividers and tabs and all the great things that will keep your information where you want it, at your fingertips.

Here's a picture.
Doesn't look like much does it? I didn't really put any effort into making it look pretty but hey, it's not decoration, right?

Here are all the pages for my biomed book so you don't even have to make them. I created a Google docs page for this blog so all you need to do is click, go to file, download as, pick one and it's all yours to modify to your needs. I left an example on some of the pages so you know how I used it but I'm not sure if I did that for all of them.

UPDATE: I had a bit of a snafu. I apologize to everyone that tried to download and had to ask permission for the files. I've changed them all to public so you should not have to ask for anything anymore and you definitely shouldn't need to sign up for anything. If there are any problems, please comment me.

Cover and divider pages - self explanatory

Dosing schedule - I use this as a daily reference for anyone that needs to know what to give. Just flip to it and everything is there.

Medicine chart - This is to keep track of all the meds/supplements, costs, why, when, how, etc. What was stopped, why it was stopped, what you plan to start soon and so on. This also has a lab quick check sheet. There are certain labs I keep close track of and I don't want to have to go to my labs section and flip through all the labs. It's now right there for me to scan anytime. If I'm tracking HHV6 titers, I can just look here and see what they were for the last year and how they moved.

Phone log - Always keep track of your communications with practitioners.

UPDATE #2: A page I neglected to upload below!

Behavior - adding/removing - Use this to keep track of behavior/changes that occur when you are adding or removing a new supp, med or therapy.

I also use sheet protectors for the dividers and in the front, I have all of our doctor's info.

Whenever you need more lines or want to delete unused lines, it's easy to do so. If your needs are slightly different or you just think you can do it better - go for it. The important thing is that it works for you and now you have an idea of how to do it if you didn't already.

Having a book like this will be able to help your spouse in case you're not there and will also be the how-to guide for family members should anything happen to you or your spouse. Everything anyone needs to know about your biomed protocol is right there.

You can also keep track of all those other things I keep pestering on about, like knowing your child's symptoms, keeping track of what's doing what, what's not doing anything, what needs something else to work and so on. You get the idea.

If you have any questions, if something doesn't make sense or you just want to know how I filled something out, drop me a comment.

Got Yeast?

2011-04-08T12:00:00.000-07:00

I'm repeatedly asked, "How do I know if my child has yeast?"

Well, the short answer is... you don't. At least not until you've learned the signs in your child. Even testing, while recommended, isn't nearly as reliable or cost effective as simply recognizing. But even then, you might be wrong. I know, sad to hear, right?

Let me start by telling you how I learned my son's signs of yeast. I read many accounts of what people said were yeast signs so I was already feeling like my son probably had yeast but I certainly couldn't identify it. Let's face it, it's not like it's going to come out and introduce itself to you in a polite voice that belies the hidden danger it encompasses.

I learned what yeast looks like by watching it die. When you start antifungals, you may see die off symptoms and those die off symptoms are generally the same as the actual symptoms only more extreme. In my son's case, die off was sticking his hands in his mouth, inability to go to sleep, inability to stay asleep, hyperactivity, inattentiveness, inability to focus, slight increase in aggression and whininess. But surprise! Not all of these symptoms are exclusive to yeast. And since die off isn't the most comfortable thing to go through, it's not surprising that you would see some of these symptoms. So now you really need to watch your child and simply learn. I learned that as soon as his hands start going in his mouth, it means yeast. This is something that simply doesn't happen any other time with him so I've easily been able to use it to identify yeast issues. When combined with waking up in the middle of the night for several hours, I then know yeast is really bad.

Night waking sucks.

My biggest suggestion in learning your child's signs is to keep a journal if you can't keep it straight in your head. And you'll also find that I use this suggestion a lot when it comes to learning about your child. Keep a journal of everything from what you have started, when you started it, foods eaten, foods removed, behaviors you see and behaviors you don't. Log everything from "nothing happened" to "the earth shook as s/he said his/her first word". Journals will also help you keep a timeline so when you see something odd creep up, you can go back and see if you or your child did something different, forgot to do something, etc.

I'm veering off course, here, though so let's get back on track. Yeast. Here is a collection of symptoms I've picked up over the years from other parents. Not all children have the same symptoms so just know that these are just possibilities. As with all things biomed, there are rarely any definitive answers for everyone.

And you thought zombies weren't real.

2011-03-21T19:57:00.001-07:00

Time, y'all. It's just a matter of time. Scientists are involved. If you're using your handy-dandy once-was-fiction-but-not-anymore guides for zombie destruction (hint: double tap and aim for the brain), that's never good. The zombie apocalypse is nigh. Zombie-proof your homes, build your compounds and prepare to hunker down. With lots of ammo.

Fungus Makes Zombie Ants Do All the Work

A tropical fungus has adapted to infect ants and force them to chomp, with surprising specificity, into perfectly located leaves before killing them and taking over their bodies

*Thanks to Confessions from Suite 500 for bringing this to my attention.

Let's get one thing straight

2011-02-23T19:56:00.000-08:00

Chelation doesn't kill.

After reading yet one more person ask the (stupid) question: how many more children will die from chelation, I'm unable to keep quiet. My response is: I dunno. Why don't you tell me how many already have? Because I don't know of any. Name one.

There are a lot of untruths in the world, especially when it comes to autism and biomed. One of the most heinous tidbits that gets passed around is that chelation kills. People seem to like throwing that out there to illustrate the dangers of chelation. What they can't do is tell you who died.

That's because no child has died from chelation. ONE boy died a very tragic death when he was given the wrong drug. ONE. And let me say this again in case you missed it the first time: it wasn't from chelation.

The fact of the matter is, he was given the wrong medication and did die as a result. The boy's name was Abubakar Tariq Nadama. It was and still is tragic. My heart goes out to his family every time I say or write his name because it can't be easy to have it out there, his death circulating to fuel a debate that shouldn't even exist if scientists were even remotely willing to listen.

There are lots of stories online that make a lot of claims and assumptions but it wasn't chelation that killed him, it was the wrong drug. This was in 2005. Here is an article on the autopsy report the Pittsburgh Post Gazette http://www.post-gazette.com/pg/06018/639721.stm Yes, the CDC was involved. I specifically chose not to send a link from a pro-biomed source so you can see that it's not something just made up by the autism community.

You can google his name and you will find a slew of negative things being said. I'm telling you this because the information is readily available and much of it is completely unreliable - but out there. It's easy for people that don't actually know anything about it to sling the mud. It's easy for those that only hear the horror of Tariq's death to sit in judgment. They only needed a death to use as cannon fodder in their attempts to make every parent that has ever done, is doing or plans to do any kind of biomed look like a bunch of kooks. What do they care what really happened?

Yes. A boy died. It's the absolute truth. They like to leave out certain details in order to make themselves sound more compelling, though (the part they don't say is rather important to the debate - which is why they leave it out). Certain details that change the entire story from being "a boy died from chelation" to "a boy died because someone was careless and gave him the wrong drug." It's used to somehow prove that chelation is dangerous and terrible and unfounded. It's tragic and the whole ordeal has been claimed as some kind of pawn in the autism vs. the rest of medicine game.

His story keeps getting passed around and somehow, it keeps sounding like this is something that just happened recently and then there's confusion that this is a new boy, a new death. It's not. It's one boy's story being told over and over trying to make people believe it happened yesterday and trying to make people believe that chelation is unwarranted - something that today is still unproven either way.

The drug that should have been given and the drug that was given looked identical. When a similar situation happened with Dennis Quaid and his gorgeous twins (thankfully they are fine, now), there was outrage that something like this could even happen. How could they make the packaging look so similar? He was fortunate enough to have the funds and the celebrity to make people take notice. When it happens in autism, it's used as phoney evidence against parents and practitioners. There is no other medical condition that I can think of that continues to be as viciously polarizing as autism.

Safety and efficacy of the choices anyone makes should always be researched. There's plenty of debate within biomed about the different types of chelation therapies and their safety. Chelation drugs are just that, drugs. They carry risk but probably not any more dangerous than other common prescription and OTC drugs. I can't guarantee that, I'm not a scientist, but chelation has been an alternative treatment for autism (as well as many other conditions) for a very long time and as far as I can tell, no one has died from it. Precautions should be taken - it can cause damage when not done properly just like most other things in life. Research should be done. Understand the different types of chelation, how they work, the success rates and all the other bits of data that will help you make the right decision for you, even if that means you end up not chelating at all.

A family was crushed and will never fully recover. I don't blame the parents for any reaction they have, even if it's to rain down hellfire on any kind of alternative treatments. They have that right, they lost a child in their quest for help. I don't know how I would react in their shoes.

He needs to be remembered for being a boy that needed help. A boy that could have had a future and parents that could have had their son for so much longer than they got. A boy that died because of a mistake. Not some poster-child to support an agenda he doesn't even fit.

A.Skate Foundation Event!

2011-02-18T22:28:00.000-08:00

Pre-sale tickets available now! New deck also available! You can find out more info here! And there will probably be less exclamation points!

Dr. Mercola: 60 Lab Studies Now Confirm Cancer Link...

2011-02-17T22:32:00.000-08:00

60 Lab Studies Now Confirm Cancer Link to a Vaccine You Probably Had as a Child

Dr. Mercola and I don't always agree. He neither knows this, nor would he likely care if he did. It's not like I have any kind of actual significance to the world-at-large. He's got a great post, though, on vaccines that I thought you might be interested in checking out if you haven't already.

Autism Journey Seminar

2011-02-17T22:10:00.000-08:00

And after having to speak the name of that-other-organization-that-is-the-object-of-my-disdain, I'm going to follow it up with one I adore!

Saturday, March 5, 2011

9 a.m.-4 p.m.

TACA Foundation Office

3070 Bristol St, Suite 340

Costa Mesa, CA 926260

949.640.4401

Individual - Parent/Caregiver - $20

Couple - Parents/Caregivers - $35

Includes lunch

Goals of the Seminar

After receiving the diagnosis of autism for a beloved child (or

children), parents typically struggle as they search through various

resources to locate information needed to help their child the fastest.

The goal of the one-day Autism Journey orientation is to provide parents

and caretakers the ³jump start² they need at the beginning of their

journey from parents who have ³been there, done that.² In addition to

sage advice, parents who attend will receive: an overview of beginning

therapies and biomedical intervention, where to go for what information,

and recommended first steps. The seminar will be given by experienced

parents who volunteer their time in providing the education new parents

need.

Who should Attend?

This one-day seminar is geared for parents and caretakers of children

affected by autism. Content will be provided in an overview

presentation with web and book resource information for additional

details. This seminar is geared to parents and caretakers new to the

autism journey (less than 15 months) who have not yet started a

behavioral/educational program or biomedical testing and interventions.

My response to Autism Speaks

2011-02-17T21:51:00.000-08:00

Autism Speaks. Just saying that name kind of turns my stomach a little. They do some good things but mostly they just take money away from organizations that actually do something worthwhile. Maybe I'm being a little harsh. I accept that and take responsibility for it. It just might be a bit unfair.

But then they say things like this and it just reaffirms my distaste for them. Go ahead. Read it now. I'll wait. (I can't tell you how much it pains me just to send traffic to them to read the blog posting but those damned copyright laws are pesky.) When you get back, if you haven't read all the comments, I'll have my comment pasted below.

So? Were you pissed, too? Here was my response:

No. It’s not time to change the conversation. I guess you think you have things all figured out. Your novel studies happen to be telling us what we already know, thank you very much. We’ve known early intervention is the key many years before you existed and just about every parent here can tell you we knew something was wrong by 6 months to a year or the day something changed, usually right after a vaccine or illness when it’s a sudden change. Behavioral therapy has also been the go to therapy since well before AS. So thanks for trying to take credit for all of that. I guess Lovaas doesn’t exist in your world. We also know a lot already about how to help our kids’ medical issues – what we need is mainstream acceptance and support to continue that area of study. So while you’re spending your money trying to figure out what we already know, the rest of us will keep discussion going that actually is useful – like what is happening to our children?

I’m also quite tired of hearing each individual person say how vaccines had nothing to do with their child’s autism. Sure, it may be true. I don’t claim to have the answer. And if it is true – that’s great. There are plenty of typical kids that aren’t affected by vaccines, either – it’s unrealistic to expect that ASD kids aren’t in that mix, too. But what about those of us that did? Do we not get a voice because you feel it had nothing to do with your child? Or what about your children’s children? Wouldn’t you want to know if they have a risk of vaccine damage?

The mentality of medicine as a science hasn’t changed much in the hundreds of year of its existence. It takes too long to get the medical community to wake up. If they don’t understand something, it must not exist. There was a time they gave women with PMS lobotomies, too. If you think that mentality has changed and we’ve somehow evolved beyond that, you’d be wrong. We make the same mistakes, only now we have shiny new technology with which to make those mistakes and be bullheaded stubborn in our desire to be right. The focus should be on the truth, not who’s right or wrong and we aren’t going to get there by letting Big Pharma do their own studies to show how their products are perfectly safe.

Drugs are put out all the time that aren’t safe – and they know it, both the companies and the FDA. Thank you, Vioxx, a shining example of how the more things change, the more they stay the same.

There are too many cases of “it didn’t happen to me so it must not be true” going around and it doesn’t do anyone any good. It doesn’t help get an answer. The same is true for those raising their hands saying, “I had my kid when I was 20 so it’s not age.” Stop dismissing things simply because it didn’t happen to you because there’s still time.

AS might be satisfied with the so-called studies that say vaccines are safe, but I’m not and neither are many other parents of children so obviously affected by them.

Occam’s Razor, people. It’s not that difficult of a concept.

I’m not one of those people that think vaccines are the smoking gun. With so many different kids with such unique issues, causation is not going to be the same for everyone. Treatments on my viral kid don’t work as well with a PANDAS kid or a gut kid or a metals kid or combination kids. I’m one of those people that believe there’s a fully-automatic machine gun shooting many different bullets and I don’t think trying to find them is as much of a waste of time as you apparently do. Yeah. Thanks for that, too. Thanks for caring about our kids so much that the getting a *real* answer just isn’t that important to you. My grandkids thank you, too.

I don’t deny that AS has made an impact. Some of it is even good, sort of. If you think you got insurance to cover ABA, well, I guess you sorta did but it’s funny how parents are still being denied by insurance in states that supposedly now have insurance coverage. But I guess you can still pat yourself on the back for that. But don’t you wonder why you have so many autism families that refuse to give you a dime? And doesn’t that matter to you?

If this sounds like I’m angry, it’s because I am. You start your blog by saying, “We still need answers to too many questions regarding causes and treatments…” and then dismiss any such conversation on just that. Wonderful work. Keep up the good job. It’s doing wonders for you, really.

Big Pharma is at it again

2011-02-17T13:08:00.000-08:00

What is it about pharmaceutical companies that make them think it's okay to push drugs on society against their will? Flouride and chromium are in our water supply. Now they want to add statins to the mix. Seriously, people.

Are you okay with being drugged? Are you okay with the cities, companies and health officials deciding what medicine you need to be taking?

Statins have serious side-effects and they want to add it to drinking water - water our children drink. Water that we all drink. If you don't already have a good filter in your house, you might want to consider one now.

It's been said our water supply already has statins. I don't know if that's true or not but I can tell you that I've had enough of other people telling me what's "good for me." Science fiction has met reality a little too many times in recent history.

Sometimes I wish I had 500 acres in Wyoming or Montana and lived off the grid. Actually, I wish that more than sometimes, I wish it every day. Lotto, when are you going to call my numbers?

Dr. Mercola interviews Dr. Wakefield

2011-02-09T19:18:00.000-08:00

More evidence supporting Dr. Wakefield is surfacing. Scientists at Wake Forest University School of Medicine, North Carolina have tested 82 kids so far. 70 are positive for vaccine strain measles in the gut. Here is an article by Sally Beck that is sure to get you thinking.

Dr. Mercola has a Youtube of his interview with Dr. Wakefield here.

I can't say that I won't be surprised if this new study gets completely ignored, or worse, trashed by the media.

What do you think will happen? Do you think this is a losing battle no matter what we do or do you think that people are going to start seeing the connection despite the media?

Integrative Biomedical Treatment Options for Children and Adults with Autism Spectrum Disorders

2011-02-03T10:18:00.000-08:00

Integrative Biomedical Treatment Options Conference

9:00 a.m. - 3:00 p.m.
Holiday Inn
Pittsburgh Airport
Saturday, March 19, 2011

Featuring:
-Gut Biology, Pathology, and Treatment Strategies in Patients With Autism Spectrum Disorders
Anju Usman, MD
-Autism and the Autonomic Nervous System
Anju Usman, MD
-Raising a Healthy Child in a Toxic World
Suruchi Chandra, MD

When common sense isn't enough: Vitamin A toxicity

2011-01-31T08:48:00.000-08:00

This is a post I've been wanting to do for a while but I had to wait for permission from the mom. Of course, my e-mail to her was buried underneath 2000 other e-mails so it took her a while to get back to me. I needed to ask because even though I won't use her name, anyone on the same listserve will know who I am talking about and that could be unpleasant without permission. Luckily, she saw my e-mail and gave me her blessing. Big hugs and kisses to Mom.

I talk a lot about the necessity of common sense. But what happens when you do use it and you still have problems? This is an example of a mom that did all the right things but no one could figure out the problem.

Mom discovered DAN and found a doctor for her child. Of course, she was very excited to get the ball rolling. Her DAN did all the labs and gave out the basic supplement list to start on.

After going on for a bit, she starts doing more.

The problems started slowly. She thought it was the antiviral at first because the symptoms started popping up after adding it. That's a reasonable first guess. Maybe he's allergic.

He continued to decline. He got very sickly, cracked lips, started losing his hair, peeling skin, vomitting, the works.

Mom did the right thing. She took her son to his ped. The ped couldn't figure out what was wrong. Mom got referral after referral and really, no one could figure this out. This boy saw a ped, a cardiologist and, I believe, an infectious disease specialist and an autoimmune specialist. No one could find the answer. He was tested for Kawasaki Syndrome and PANDAS, got an EKG, an Echo and hosts of other tests.

There were mulitple e-mails to the list for parent help and doctor's visits - this is important to note. She didn't just wait for parents to tell her what was wrong with her son. This is the perfect example of using common sense. Don't ever simply rely on parents to know the answers. And don't rely on any answers they give to be right. We're just parents, after all, not doctors. Parents are for ideas and information and experience, not a diagnosis.

The first e-mails came in October. This went on for some time and he just progressively kept getting worse. She was terrified, and with good reason. She went to doctors and she was still being bounced around to other doctors and specialists, all trying to help her figure this out. Scary doesn't even begin to describe it, as I'm sure you can all understand. These are our babies.

One day, she sends one last panicked e-mail asking for help and feeling like the Worst Mom Ever.

Slowly but surely, we tease out more and more information until we can put the shattered pieces of this particular puzzle together. We all think she should stop everything in the meantime, at least until this gets sorted out. We continue for the next day or two asking more questions and getting more specific and we finally hit upon it.

Vitamin A molecule

I don't call her actions outside the realm of common sense because we expect to be able to listen to our doctor. Mainstream medicine encourages it, even. The media encourages. And doctors expect it. How many times have you been poo-pooed by your doctor for mentioning something you learned on the web and they told you not to pay attention to it? How many doctors told you vaccines were perfectly safe? We want to believe in them.

I also don't know the details of whether or not Mom told the many doctors she was sent to what supplements her child was on or the dosages. I would hope the doctors she saw would've asked.

I also don't know if this was a simple misunderstanding between her and the DAN that had not so simple repercussions. Here's the thing about misunderstandings: if, in you're mind, you fully understand, you're not likely to ask questions. There's no way to use common sense in a situation where you think you already are - I think we can all relate to this concept.

She was giving toxic doses of Vitamin A. Add that to the amount of Vitamin A found in CLO and the multi she was likely giving and she well exceeded the toxic dosage amount for daily use. And she'd been doing this for several months. The symptoms of toxicity just happened to coincide with her starting antivirals. This is where being human is simply an epic fail. She listened to her DAN and didn't look up the dosages on her own to see if they were safe. She didn't expect to need to. And when everything is going according to the way things are supposed to, she shouldn't be expected to know and she should be able to trust her doctor. But we all know that things never go the way they are supposed to go - we wouldn't be autism parents if that weren't the case.

She was giving 10,000 IU of vitamin A daily for about three months.

Symptoms of Hypervitaminosis A:

Abnormal softening of the skull bone (craniotabes -- infants and children)
Blurred vision
Bone pain or swelling
Bulging fontanelle (infants)
Changes in consciousness
Decreased appetite
Dizziness
Double vision (young children)
Drowsiness
Fatigue
Headache
Impotence and ejaculation failure
Increased intracranial pressure
Irritability
Nausea
Osteoporosis
Poor weight gain (infants and children)
Skin and hair changes
- Cracking at corners of the mouth
- Hair loss
- Higher sensitivity to sunlight
- Oily skin and hair (seborrhea)
- Skin peeling, itching
- Yellow discoloration of the skin
Swelling of breast tissue in men (gynecomastia)
Vision changes
Vomiting

When we asked for dosages of her supplements, you could practically hear the collective yelling at computer screens: STOP THE VITAMIN A!

No matter what, the thing is, she did everything right. She went to doctors other than her DAN. She went to specialists. She didn't sit around and let things get worse waiting for parents to tell her what to do. The doctors didn't have any answers for her, but she didn't cry on the couch like we all wish we could. She actively sought professional help.

I'm happy announce that her son is fine. She stopped the vitamin A and his hair has grown back, his skin isn't peeling and itching, and he's perfectly healthy. She's very lucky that she didn't continue this, the damage could've been far worse. But he's healthy and happy and doing very well now so there is a very happy ending to her ordeal.

What can we learn from this? Don't be afraid to question your doctor. And don't be afraid to google the dosages you are giving to your child of any supplement, no matter how trustworthy your DAN's reputation is - mistakes happen. DANs and mainstream doctors are all human, too. Understand what it is you are giving to your child before you give it. When you get your list to give to your child, look it up. Look up toxicity levels. Find out if you are being told to give it and then talk to your doctor about why that it is. Many supplements simply don't have a toxicity level. Others do. Know which ones do.

And before I get comments like, "lots of doctors prescribe that same dosage with no problems," clogging up the comments - yipee skippy and yay for them. That doesn't mean everyone can take that dosage - we all already know this: each child is unique what works for one doesn't always work for another. This high of a dosage should be closely monitored by a doctor when prescribed. Whether or not alternative medicine uses higher dosages, it doesn't change the fact that there is toxicity and there is an amount that's widely accepted as toxic for daily use. Just because alternative medicine can offer beautiful and wondrous therapies, it doesn't mean mainstream medicine is always wrong. If she had known what is typically considered to be toxic, she could have made the choice to do it or not and if she chose to do it, she would've been on the lookout for toxicity symptoms and wouldn't have gone through what she went through. So please, this isn't about arguing the merits of the dosage she was prescribed, clearly it wasn't right for her son and no one was even monitoring it.

(I should mention that this post is in no way related to the High Dose Vitamin A protocol. This protocol is two days only. There's a big difference between daily dosing and the High Dose Vitamin A protocol.)

When there are problems and you need to see a doctor, don't withhold information about what your child is on. I have no idea if this happened here and I'm not making any assumptions, I'm only reiterating that you need to tell your mainstream doctors, no matter how much they hate biomed. That information could be what saves the day. In this case, she may have done just that and they just didn't think to even do a Vitamin A test, I don't know. No matter what, the information is important, especially when your child is on the line - what they do with that information is out of your hands.

When I asked her permission, she was happy to give it, hoping to help others not make the same mistakes. Mom has suffered a lot of pain over this and I appreciate her bravery in allowing me to tell you how easily it can happen to anyone.

Please give her a big round of applause and thanks for allowing me to tell her story.

AutismOne/Generation Rescue 2011 Conference FREEEEEE!

2011-01-30T20:09:00.000-08:00

Since we are on the subject of conferences, AutismOne/Generation Rescue 2011 is also coming up! I'll post registration info when it's open.

A Gift from Our Family to Your Family

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AUTISMONE/GENERATION RESCUE 2011

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May 25 – 29, 2011, The Westin Hotel, Lombard, Illinois

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It’s time to open not only our hearts, but our home. And so it is with open arms we invite you to come and share with the AutismOne family what we have learned collectively over the past decade. It’s time to embrace every family affected.

Currently constructed autism costs too much. One of the biggest obstacles to recovering children has always been the cost of educating parents. We believe answers need to be free.

Each year we learn how to do more with less and each year the conference is a reflection of the ever-growing body of accumulated knowledge.

Each year we learn more about how to prevent autism or minimize its effect. Each year we learn more about dealing with autism in adolescence and adulthood. Each year we learn more about the underlying biomedical issues at work.

This year we will have the chance to share with you what we have learned whether you are a woman thinking about having a child or a parent with a child aging out of the school system or a mom facing autism for the first time.

This year we will help you learn about taking care of yourself. For the first time, this year, we will train practitioners to implement the biomedical mission of care.

This year we will train more attorneys to fight for you and first responders to help protect your family. This year we will train more students to assist your child, advocates to challenge the system, teachers to educate your child, and professionals to embrace recovery.

This year we welcome parents who have not had the opportunity to learn what they must to help the ones they love the most.

We will teach you, we will guide you and provide you with the tools and education and together we will begin the journey of recovery.

- Ed and Teri Arranga, conference directors and parents to Jarad and Ian.

AutismOne & Generation Rescue

Announce

Autism Recovery on a Budget: Empowering Parents

Get control of your child’s health while getting control of the costs

Wednesday, May 25 – Sunday, May 29

The Westin Lombard Yorktown Center, 70 Yorktown Center, Lombard, Illinois

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After the shock of diagnosis, one of the first thoughts parents have is, “I will spend whatever it takes to help my child.” It’s understandable, but not the most helpful reaction. In fact, it can work against you.

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Keynote: Saturday, May 28

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ARI 2011 Conference now open for registration

2011-01-30T19:05:00.000-08:00

Mark your calendars!

AUTISM RESEARCH INSTITUTE

Spring 2011 Conference
Renaissance Waverly HotelAtlanta, GA| April 28-May 1
Level 1 & 2 Practitioners | April 28-29
General Sessions | April 29 - May 1
Science Sessions | April 30 - May 1
Nutrition Session | April 30
Adult Issues Track | May 1
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Antiviral Therapy 101, Part 3

2011-01-27T21:30:00.000-08:00

I was asked why there is a concern with viral mutation if the dose isn't high enough. I thought I would share my answer. Here it is:

My explanation for this is long, bear with me.

I can't give a full-blown scientific explanation but I can try to explain it in layman's terms as I understand it. Now, keep in mind that this is all from Dr. Goldberg. I don't know why DAN or other lower dosing protocols don't feel the same way so I have no way of even guessing if they may be wrong, right, or somewhere in the middle. My own DAN even thinks that 2x is usually sufficient with no viral mutation but is not opposed to 3x a day and does see benefit. But I can guess why they might think 2x a day is fine, and that is half-life, which is the basis for all medicine dosage.

We'll use Valtrex as our example. The half-life of Valtrex is approximately 4 hours (some studies say more, some say less so 4 is about what I call the average, again, no science involved in my conclusion on that). And also understand that when looking at half-life, the amount of drug in the system doesn't simply drop in equal numbers by the hour. You don't start off taking 1000 mg and in 4 hours you have 500 mg in the system and in 7 hours you have 250 mg. And this is probably why there is differentiation in results of half-life, there are other factors that come into play. Again, I'm not a scientist and I have no idea how half-life really works as a function. I only understand it as a concept. Half-life simply means how long it takes for half the medicine to be gone from your system. It doesn't necessarily mean that that is half the time it takes to leave your system.

But before we go on to why half-life is important, we need to look at how the medicine works. It works by inhibiting replication. Different antivirals do this in different ways but this is the outcome: viruses can't replicate.

Viruses, are not living organisms, just strands of DNA or RNA with a hard outer shell - they don't even qualify as being a single-celled organism. Anyway, they inject themselves into host cells and hijack the replication system, encoding themselves into your DNA (maybe not exactly like this but again, layman's terms) and that's how they replicate.

Antivirals stop this process but they only work for as long as the drug is in the system. I'm not sure what the threshold is for how much is necessary to have in the system for it to work. Could be 500 mg, could be 5 mg, I don't know. But think of it like this. We know there are thresholds for something to work. We know that underdosing an antibiotic will not kill the bacteria you are treating. The same applies to supplements. If you take 5mg of Vitamin C a day, it's not likely going to do anything but waste the time it takes to take the capsule and your money buying the bottle. There's no effect until you reach a minimum amount of vitamin C a day.

So now we get back to half-life. You want to keep enough of the drug in the system to maintain a workable dosage in the body. In NIDS, they want to keep a higher amount to ensure it's inhibiting replication. Here's what I think might be going on with DAN. Because the half-life is about 4 hours, they may be assuming that every 8 hours is sufficient, they aren't concerned by the minimum threshold amount for it to work. They just want you to take it at about the time the drug is almost completely out of the system. NIDS isn't taking that chance. It exponentially increases the amount of drug in the system so that by the time you go to bed, you have enough in the system to make it through the night without running out. (Now, keep in mind that I said I don't know the mechanics of half-life. So I say exponentially but I don't truly know that that happens or the mechanics of it. It might not be exponentially increasing the amount of drugs you have in your system, just like it does't exponentially decrease.) With DAN, you are taking it once in the morning to get you through the day and then once in the evening to get you through the night.

Now, in my mind, if the life of a drug is approximately 8 hours (could be more, could be less because remember the above exponential problems we have, but we are just going to assume 8 for the purpose of trying to explain). There are 24 hours in the day. Taking it twice a day only covers 16 with a possible extension of maybe 4 hours but I find it hard to believe that it will cover a full 24 hours). In 3 times a day, you have overlapped dosage before the dose runs out, so there is more in the system and this extends the length of time it's going to be in the system, hopefully covering the full 24 hours. Now I could be totally wrong in my understanding of this. I do not claim to have the answers. It's just my understanding and my working my way around the information I understand, which granted, I may only think I understand.

So how does this affect viral mutation? Simple. Viruses mutate. When you allow replication to restart, that gives them an opportunity to mutate because that's when mutation occurs - replication. The same is true of anything. The cells in your body don't just mutate as they are in your body all whole and complete and doing their job, they mutate during replication. The same is true of bacteria and the overuse of antibiotics.

By dosing 2x a day, you are leaving a gaping window of opportunity for replication.

Here's the thing about mutations. Everything mutates, viruses, bacteria, cells, DNA, everything. New flu strains come up every year, babies are born with genetic defects, etc. Viruses aren't actively thinking, "I need to mutate to form a resistance to a drug." They just mutate. And because of the specificity of how antivirals inhibit replication, they can mutate themselves into drug resistance. Antivirals can work simply by changing one little tiny protein that disrupts their current method of replication. One mutation that doesn't involve that protein and it's resistant because antivirals are so specific. Any tiny mutation could lead to resistance. And the less complex the thing, the more significant the mutations can be. This is why you don't see babies born with six toes every single day, in every single hospital. We are too complex and mutations within us aren't always so major or even remotely significant.

There isn't much info on antivirals, stealth viruses and mutation with autism, of course. Where you tend to find the information on viral mutation with antiviral use is in the places where it is life threatening, namely - AIDS and other immunocompromised illnesses that have any potential to be fatal. Most of the research done in this area is on AIDS patients. Typically, when AIDS patients find that the antivirals don't work - it's not always because they are dosed wrong, but because as patients, they aren't taking it as directed. They are skipping doses. Of course, that's not the only reason, but it is major reason and a very important reminder that one must take these drugs appropriately if they are expected to work.

Is DAN right in 2x a day, is it sufficient? I can't say. I can only tell you that this is how I've worked it out in my mind and I tend to think that 2x a day is generally not sufficient. Since there are kids getting benefit from it at 2x a day is simply more proof that we just don't know. Doctors Rx antivirals as low as 1x a day for some illnesses. So the answer is really still a mystery to me no matter how I work it out trying to apply logic when I really don't know all the facts. But this is the conclusion I came to. And this is why, even though I no longer see a NIDS practitioner, I still choose to follow the NIDS dosing.

I have no idea if that helped or not. And if anyone has anything to add or correct or clarify, hop on pop!

So that's my story. I'm not sticking to it if you have something better to tell me. You know where the comments are and my mind is always open.

Gryffin's Tail Group and links

2011-01-26T22:55:00.000-08:00

It was just brought to my attention that some of the study links I had weren't working. Those should be fixed and you should not have to request membership into the Gryffin's Tail Google group to see them anymore. I'm not sure what happened but a setting got switched.

Gryffin's Tail Group is not a functioning group. It is only a place for me to place .pdf files that I want to link to from this blog and you should never have to become a member to view any files.

If you tried to view a .pdf and couldn't, I apologize and you shouldn't have that problem anymore. I hope.

Gryffin's Tail

Gryffin's Tail

Gryffin's Tail

Gryffin's Tail

Gryffin's Tail

My son’s self portrait

New post on Gryffin's Tail

My son’s self portrait

Low levels of zinc linked with autism in children

Took the plunge

Antiviral drugs may slow Alzheimer’s progression (The University of Manchester)

Scientists fear MMR link to autism | Mail Online

All the tests that folks talk about

Children with autism and gastrointestinal symptoms have altered digestive genes

Vaccination's vexed link to autism

Yay, UC DAVIS MIND Institute! I <3 you.

Should we even try to recover our kids?

Packing up and moving

Summer reflections

2 studies connects vaccines to SIDS - 1 old and 1 new

Here's a great article to help put these into perspective: New study proving vaccines can kill children.

Infant mortality rates regressed against number of vaccine doses routinely given: Is there a biochemical or synergistic toxicity?

Abstract

Possible temporal association between diphtheria-tetanus toxoid-pertussis vaccination and sudden infant death syndrome.

Abstract

Blogger has gone nuts

Biomed book: Food Diary

Autism doesn't exist

More on what we already know

Sample page for the biomed book

A Review of Compensated Cases of Vaccine-Induced Brain Injury

Another new look

I'm sorry. Excuse me. Pardon me. My apologies.

Some personal thoughts on ADHD and stimulant meds

From autism to ADHD

New page for the biomed book!

Dr. Helen V. Ratajczak and vaccines

Toxic baby food: is anyone really surprised?

Arsenic and toxic metals found in baby food

XMRV and autism

New way to subscribe!

The biomed book and how to make one.

Got Yeast?

And you thought zombies weren't real.

Let's get one thing straight

A.Skate Foundation Event!

Dr. Mercola: 60 Lab Studies Now Confirm Cancer Link...

60 Lab Studies Now Confirm Cancer Link to a Vaccine You Probably Had as a Child

Autism Journey Seminar

My response to Autism Speaks

Big Pharma is at it again

Dr. Mercola interviews Dr. Wakefield

Integrative Biomedical Treatment Options for Children and Adults with Autism Spectrum Disorders

When common sense isn't enough: Vitamin A toxicity

AutismOne/Generation Rescue 2011 Conference FREEEEEE!

ARI 2011 Conference now open for registration

Antiviral Therapy 101, Part 3

Gryffin's Tail Group and links