Friday, June 23, 2006

Mystery Rash

On Tuesday Derek started getting this rash all over, arms, legs, trunk, ears, neck...it would just come and go.

First we thought it was from something outside, because it first showed up not long after he was outside playing, but also just after he had ate some pancakes that I made him, which I made a little differently this time. I added in some applesauce that has cinnamon in it and I used canola oil which I had purchased to replace our vegetable oil.

We thought then maybe it was the cinnamon applesauce, that the "natural cinnamon flavoring" might be the cause.

Next we wondered if the benadryl we'd been giving him off and on for the last few days was causing some sort of adverse reaction.

Ah the fun of trying to figure out where this stuff comes from.

We gave him benadryl again Tuesday night, and his skin seemed to calm down, so we figured it was outside that caused.

Wednesday & Thursday it was back again, so now I'm worried it was the benadryl and didn't give him any.

Thankfully this morning we had our first DAN! doctor appointment. I hadn't intended to need to discuss anything, but because of the obvious symptoms we ran through all the things that might be the cause. Of course it all flared up again while we were in the office, which is a good thing, because kids never present in front of doctors when you need them too!

Doctor thinks it could be the canola oil, but to cut out both the newer foods (even though he's had cinnamon before, just not in the applesauce) go back on the benadryl and we're going to see if we can get him to drink some activated charcoal to clean out anything in his system that is causing this reaction. I'm hoping its food/gut related but if not it will be off to his pediatrician to get a handle on this.

Anyway the other point of my post was to share what I found about canola oil, I just figured it was like other oils, but switched to it because the vegetable oil I had was soy based and I try to limit soy as a good percentage of the kids with casein issues also have soy issues.

After reading this article though, I see not all oils are created equal:

The Great Con-ola from Dr Mercola's site.

And to be fair, I found this article at Spectrum Organics explaining their process to make the oil.

The Preschool Ordeal

So I did it. I finally filled out the forms and wrote out the check to put Derek into a typical preschool next fall.

The whole thing has been such an ordeal, first the school district agreed with us at an IEP meeting that he needed to be with more typical kids, he was moving through their program at a quick pace. Then they arranged for me to meet with a district rep to "look" at preschools in the area. After a week of playing phone tag with the lady we finally met one morning. She gives me this poorly designed brochure on how the district can help you with this process and has relationships with preschools in the area.

And her idea of "looking" at preschools? A 3 inch binder that was filled with copies of webpages of the preschools in the area. Um, ok. I'd already done all that, I was looking for you to tell me which schools you support and cover within this district so I can pick one.

"Oh we don't pay for that, its the parent's responsibility"

Whaaaat?

So you tell me my child needs typical peers, this I know, and yet you want to hand me a binder of preschools, a brochure that tells me you help with this process but this isn't part of his IEP, that you won't cover it?

Nope. And even better, on his IEP they wrote in "Parent's haven't picked school yet" where they want a reason for denying the service of putting him into a preschool.

Granted, I know I might have a valid argument here, but I'm so tired of fighting with the district, insurance companies and everything else I gave up on this one. Not only that, I could see them dragging their heels and not wanting to do anything for months, and around here preschools have become really popular and people sign up for them a year in advance! Wasn't like this 5-6 years ago when I put my 10 year old in one.

So most of them were already full as it was, as of last December. One thing I really wanted was a co-op, first so that I could be around the situation to see how he's doing, and second the cost factor. I also just like the idea of community involved in something like this, parents who take the time to be involved in their children's education.

We picked one, and I guess the next decision is him needing an aide. I think he will need one, at least daily for the few couple weeks, then phase out over the next few weeks. I doubt he'll need one all year, or even half a year. I'd really like to put in my own, but I know the district will fight me on that, and the idea of them putting someone in who doesn't even know Derek, that will take two weeks to get to know him, just bothers me. I need someone who knows him ahead of time, what makes him tick, and foresee problems before they are out of hand.

Derek's in a hitting phase, he's been hitting instead of using words, granted this is pretty typical for a 2-3 year old, and he just turned 4, but he's behind socially and I know that. My fear is that little Johnny is going to take a toy away from Derek and instead of Derek saying "hey give that back" or telling someone he'll just hit. Parents and teachers won't see little Johnny taking the toy, they'll just the end result of Derek hitting. Hence Derek gets labeled as a "hitter" and/or "problem child". I need an aid who has all eyes on this and can explain to a teacher or parent helper what just went on.

I'd do it myself but at the same time I don't want Derek to rely on me always being there, I think it might do more harm than good.

Ah, the frustrations!

Thursday, June 22, 2006

Little Bit of Fun

From Mom-NOS Blog

5 things in my refrigerator:

- gf/cf chicken nuggets I made but my son won't eat
- lots of fruit to make a fruit salad tomorrow
- leftover chicken
- mostly gone bottle of merlot
- vanilla rice milk


5 things in my closet:

- a Hanna Andersson bag with girls socks that I'll never use
- a diaper bag/back pack that I need to sell
- shoes
- a cute hat from Hanna for Derek that he wore last winter
- stuff that I probably have no idea was in there

5 things in my purse:

- chapstick
- Look Ma New Hands from Bath&Body Works (I love this stuff!)
- cinnamon flavored mints
- not enough cash (ever)
- keys (unless I've lost them again)


5 things in my car:

- XM Radio and all the contraptions to make it work
- wet wipes
- Real Simple magazines to read if I get a free moment (ha!)
- papers I need to throw away
- pair of flip flops


5 friends I'm tagging:
I'll edit as I pick my victims :)
If you want to play let me know and I'll link you here.

Monday, June 12, 2006

Autism Enlightened

Yet another excellent video, detailing children with autism being treated biomedically and parents seeing positive results.

Autism Enlighted

Tuesday, June 06, 2006

Newest ATEC Score

ATEC website through ARI

A full two years since the first score was given, in those two years:

- 2 years of gf/cf diet (recently limiting soy)
- 9 months of chelation (9 months of td-dmps, 3 months of td-ala)
- 10 months of ABA

Summary Scores (this is the total, not broken down), the scores are 0-180, with 0 being the most typical child, the lower the score, the better.

June 2004 (before any diet/therapy/etc) - 90
December 2005 (1.5 years diet, chelation, aba) - 54
June 2006- 26

In two years to go from moderately on the spectrum to nearly typical, this isn't nature taking its course, this isn't him just getting better, its what we've done to for Derek.

I ponder all the time if we SHOULD be doing all this, there are plenty of parents who just roll with it, let autism be their child. I don't know where their children are on the spectrum, or how they will be as teenagers or adults. Maybe they'll be fine, hold jobs, get married, go on with life. Maybe they won't.

I didn't feel I could take that chance, that by some miracle Derek just got better, maybe he would have. Maybe not.

I KNOW he has opportunity now, at this rate he will be able to live on his own as an adult, hold a job and be part of society. Will he be totally "normal"(define normal)? Don't know. But even if he has quirks, they will be more accepted, easier to ignore and may not be so obvious. I was reading a story today that a mom wrote out about her teenage son, he had been doing well until he hit his teen years and now his quirks and stims have picked up so much he's embarrassed to be in public. I don't want that for my son, if I can help him now, and he has as normal as childhood as possible, then I've done well. He's happy now, when he wasn't before, just sitting there, zoning off into space or running around in circles oblivious to us all, or running up and down a hallway with his hands on the bumpy walls.....that's not childhood.

Now he's playing outside with his siblings, and we're looking at putting him into a preschool this coming fall. I'm looking for playdates, maybe even a short summer camp or activity like a gym or music class for his age. THAT is childhood.

On another good note, his insurance recently has updated to start including 12 visits a year to a naturopath. The better news is that there is a DAN! doctor in our area that is not only an naturopath, but an approved provider on his insurance. For the first time we can finally see a DAN! doctor. I feel like this will be one more piece of our puzzle in place, someone to order and run the right tests, so much that we still need to work on with his diet and skin issues.

Just wanted to let parents know who aren't sure what to do right now, this all does pay off, I know it doesn't work for everyone, but it really does work for far more than not.

Thursday, June 01, 2006

Heavy Metals may be Implicated in Autism


Heavy metals may be implicated in autism

30 May 2006


URINE samples from hundreds of French children have yielded evidence for a link between autism and exposure to heavy metals. If validated, the findings might mean some cases of autism could be treated with drugs that purge the body of heavy metals.

Samples from children with autism contained abnormally high levels of a family of proteins called porphyrins, which are precursors in the production of haem, the oxygen-carrying component in haemoglobin. Heavy metals block haem production, causing porphyrins to accumulate in urine. Concentrations of one molecule, coproporphyrin, were 2.6 times as high in urine from children with autism as in controls.

Autism is thought to have a number of unknown genetic and environmental causes. Richard Lathe of Pieta Research in Edinburgh, UK, says he has found one of these factors. "It's highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases," he claims. The study will appear in Toxicology and Applied Pharmacology.

Lathe says these porphyrin metabolites bind to receptors in the brain and have been linked with epilepsy and autism.

The researchers restored porphyrin concentrations to normal in 12 children by treating them with "chelation" drugs that mop up heavy metals and are then excreted. It is not yet known whether the children's symptoms have eased, but Lathe cites anecdotal reports suggesting the drugs might do some good.
Study Finds MMR Is Linked With Autism

By Lucy Johnston for the Sunday Express
http://www.express.co.uk

Scientists have confirmed the controversial link between MMR and
autism.

The findings corroborate research by Dr Andrew Wakefield, discredited by the Department of Health for suggesting the combined measles, mumps and rubella jab may have contributed to rises in the disorder.
The new study, led by Dr Arthur Krigsman, a child gastroenterologist from New York University School of Medicine, has led to calls for an immediate overhaul of Britain's child vaccination programme.
The research, to be presented at the International Conference for Autism Research in Montreal next week, is still going on but, unusually early findings have been released because of the significance.
The study, which covers 275 children and is being carried out at different medical centres in America, found serious intestinal inflammation in autistic children identical to that described by Dr Wakefield and his colleagues eight years ago.
Gut biopsy tissue from 82 of these children reveals that 85 per cent have evidence of the measles virus in their inflamed intestines. Fourteen have so far been confirmed by more stringent DNA tests.
The news will be a huge embarrassment for the Department of Health which rubbished Dr Wakefield's research on the grounds it was uncorroborated "bad science". Steve Walker, assistant professor at Wake Forest University
Medical Centre, North Carolina, who analysed the gut samples, said the work mirrored Dr Wakefield's study.
"We're very excited by our findings," he said. "Wakefield's study was criticised because it lacked replication. Our goal is to see if the finding was real. Preliminary results show that it was."
Just as Dr Wakefield discovered in his work on the children with a previously unidentified bowel condition, Dr Krigsman's patients had all inexplicably deteriorated, losing language and other skills at around 12 to
18 months of age.
All of the children under both doctors were diagnosed with autism and had come to them seeking help for symptoms of serious digestive problems for which no explanation could be found.
Dr Wakefield, who was forced to resign his job as a gastroenterologist at the Royal Free Hospital in north London after he publicised his theory, welcomed the research. He said: "The Department of Health was able to discredit our research by saying no one else had found similar results to ours but no one else had looked.
"In the light of these results - which are strikingly similar to ours - the Government and its regulators are obliged to act. At this stage it would be prudent and in the best interests of vaccine uptake to make single vaccines available."
Dr Richard Halvorsen, a GP from the Holborn Medical Centre in central London, who is writing a book on the child vaccination programme, said: "This is incredibly powerful evidence confirming the link between autism,
MMR and bowel disease.
"The Government should withdraw MMR until its safety can be proven, particularly as we have safer and effective alternatives."
Jackie Fletcher, founder of Jabs, a support group for parents who believe their children have been damaged by vaccines, said: "This study confirms that the measles virus is present in the guts of these children when it shouldn't be.
"This also shows that the studies, which the Government use as proof of the safety of MMR vaccine, are inadequate. The MMR should be suspended and single jabs reinstated immediately. We cannot take risks with our
children."
A spokeswoman for the Department of Health said it could not comment on the research until it had been presented but she defended the triple jab. "There is no link between autism and the MMR vaccine," she said. "MMR
remains the best form of protection against measles, mumps and rubella."

-------
My comments:

I am thrilled to see this study replicated and thus far the findings are positive to uphold Dr. Wakefield's work. I've said it many times, and sing the praises of the GFCF diet. This diet was a turning point for Derek, without it he would not be where he's at now. Its difficult to start, but once started and you get going its doable, we're now two years into it and have tried to allow other foods, only to find out that too many give him the dark circles and red cheeks as a physical reaction, but worse by far is the behavioral change.

More on Evidence of Harm movie

Participant Productions

Evidence of Harm


OVERVIEW

Genre: Drama
Status: In Development

CAST & CREW

Producer: Ross Bell

SYNOPSIS

When their children descend into the frightening world of autism, a group of parents discover a disturbing link between thimerosal, a mercury-based preservative found in vaccines, and the steady rise in autism and developmental-based disorders. One tenacious mother, Lyn Redwood, risks her family to battle the FDA, CDC and the American government to increase transparency within the organizations and to increase funding for research, despite efforts from pharmaceutical companies and government officials to suppress evidence and prevent parents from gaining restitution for their children’s conditions. When a midnight rider is added on to the Homeland Security Act of 2002 indemnifying the pharmaceutical companies from retribution, the fight for answers and restitution intensifies; even as Lyn continues to fight the war at home in trying to rescue her son Will from the grips of autism.

From Publisher’s Weekly:

The first serious journalistic account of a highly controversial topic, Kirby's book addresses the front-page question: has a mercury-containing preservative called thimerosal, commonly used in children's vaccines, caused a national epidemic of juvenile autism? Following the development of the debate through the eyes of a handful of impassioned parents who formed the political action group, Safe Minds, Kirby, an experienced writer for the New York Times, crafts an engrossing David and Goliath story from this controversy, one in which the giant is an amalgamation of big government bureaucrats and corporate pharmaceutical lobbyists. Whether the association between thimerosal and autism is real remains to be seen, as Kirby points out. And though Kirby clearly sympathizes with the parents' tragic experience of autism in their families and their inherent desire for justice, and though he occasionally demonstrates a lack of understanding about the politics of scientific publication and the wording of scientific articles, his book remains one of the most thoroughly researched accounts of the thimerosal controversy thus far. This is the book for medical professionals and concerned parents to read. It's accessible in its handling of medical topics and compelling in its recounting of the parents' fight to advance their agenda in the face of both political and scientific roadblocks.

From Generation Rescue - Autism Recovery Stories on Dateline

ALERT- AUTISM RECOVERY STORY ON NATIONAL TV

This Sunday evening, June 4th 2006 (7PM- 9PM est), Dateline NBC has a 12 minute segment featuring Baxter Berle and Joshua Shoemaker, two children on the road to recovery from autism. The segment also includes information about the treatment research of Dr. James Adams.
Dr. Adams told people at the Autism One conference he saw the piece and thinks it is fair.

Those involved have been informed by the segment producer that the NBC executives REALLY listen to the letters and emails. After viewing, PLEASE COMMENT so they will consider airing future segments on this important topic at

dateline@msnbc.com.

Please send this far and wide. Thank you.