Posts filed under ‘Support’

Parents Rights & Autism

One of the best blogs I have seen on parents rights in custody battles relating to autism:

http://autismcustodybattles.wordpress.com/

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October 8, 2011 at 2:37 pm Leave a comment

Making Progress in Autism – Probiotics and more!

Thanks Alex for the following question about progress through probiotics: 

My 5 yr old son is on the gf/cf/sf diet and I’m just about to order lots of supplements online. After reading your Press On! it sounded like us, however we haven’t started any probiotic yet. My son’s “disagreeableness” (made sense to me!) is pretty bad right now, without any supplement. How long roughly was the “rough part” for you?

Did the new line of probiotics that you mentioned come out yet?

Thanks!
Alex

Alex,

Yes, the probiotic product (and other products we use) have been released and they are fantastic! The company is Neocore Spectrum, and the website is http://www.neocorespectrum.com. The probiotic is very high-potency with 25 + Billion CFUs (colony forming units). It is gluten-free, casein-free and also free from FOS (a prebiotic in many probiotics that feeds bad bacteria). It also is formulated so that the probiotics survive the stomach acid and can actually colonize in the intestines – where they can do their job.

We also use all the products offered by Neocore Spectrum – the multivitamin/multimineral, enzymes (both chewable and capsules), omega-3 fish oil (small gelcaps), liquid antioxidant extracts (my sons LOVE the Blueberry), and the Silver Renew gel. The Silver Renew skin gel has been wonderful for us – we use it on bug bites, skin irritations, eczema, and even used it on a viral rash called Molluscum. I recently had some horrible eczema flare-ups on my arms and used the Silver Renew and saw relief within minutes, and complete resolution in only a few days.

The thing I love best about the Neocore Spectrum products is that I really feel I am getting a value for my money. For example, the multivitamin/multimineral is very complete and is reasonably priced. It is well-suited for our autistic children. (I use the products for myself too!) It is free from copper and iron, it uses many natural forms of vitamins. It also contains the active forms of folic acid, vitamin B 12, B-6 (it contains P-5-P), which the information published by the DAN! doctors and the Autism Research Institute shows that autistic children have difficulties processing these vitamins and need the more active forms. There are even bioflavonoids for extra antioxidant protection. A multi like this is truly hard to come by!
Alex, to answer your question as to how long the most difficult part lasted – I must say that it took several months of working on the yeast imbalance before I noticed that my son’s behavior and mood improved and the “disagreeableness” began fading away.

As I mentioned, he was so toxic when we began the probiotic supplementation, that we saw his behavior worsen for the first few weeks. He even had some nights of rough sleep where he would kick and scream out at night. I now know that was the bacterial and yeast die-off. Now I know that activated charcoal pills can help alleviate some of the die-off reactions. (Make sure not to take the activated charcoal within 2 hours of eating or taking any supplements.) Also, it is important to stay away from sugar – even excessive fruit sugar (ex. we avoid dried fruit) and moldy foods. It’s also important to work on the overall health of the body – supplying the vitamins, minerals, essential fatty acids, and nutrition that the body, and specifically the immune system needs.

It is a lot of effort, but I must say it is worth it! Tonight as I was giving my boys a bath, I was thinking back a couple of years. I was remembering how difficult it was back then to give my son a bath. He would throw a constant fit during bath time – he didn’t like the water over his head, he didn’t like the smell of the soap (which was totally unscented!), he didn’t like the towel, he didn’t want his hair dried, and on and on! By the time I got him to bed, I would be in tears! Now our bath and bedtime routines are a joy! My boys hug and kiss each other goodnight and say “I love you!” to each other and to me! It is what I hoped, worked, and prayed for, and I am truly thankful! I pray for that same joy for you!

Blessings!

October 16, 2008 at 11:03 pm 4 comments

Upcoming Teleconference Seminar on Causes and Treatment of Autism

There is lots of great information on the internet about the causes and treatment of autism.  Early on in our journey to bring our son to healing from autism, I personally found so much help from the Autism Research Institute www.autism.com and many others.  I spent hours and hours staying up way too late, educating myself about the causes and treatment of autism (the treatment of it and not merely management of behavioral manifestations). 

Recently, I discovered an upcoming teleconference seminar which I believe will clearly present information on the causes and treatment of autism.  I have personally registered for it because I am interested in always learning more about helping my son.  I believe it will be educational and full of hope! 

The teleconference seminar is scheduled for August 14, 2008 at 7:00 p.m. Eastern Time.

Here is the link to register:

http://JustAskDrMike.com

When you register, you will be directed to a page with the phone number to call in for the teleconference, and it also includes a link to listen live via webcast. 

I also encourage you to read the information on this related website:  www.Lispectrum.com   There is fantastic, well-presented information on this site about the causes and treatment of autism.  I encourage you to read it! 

Blessings to you as you learn and journey toward healing!

“But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him.”  James 1:5 NASB

August 8, 2008 at 12:53 pm 2 comments

Overcoming Sensory Issues with Food in Autism

Kattie submitted the following question regarding problems with eating:

“my child was diagnosed with autism 2 years ago. he has been tested and does have mild alleries to wheat,milk,eggs. meal time is such a battle..he only eats about 5 foods. cheese, ramein noodles, cherios, bread, and strawberries. trying to get him to eat anything other than that he gags himself to the point of vomitting.any advise on where to start??? i do have a gluten free casein free cookbook, however it is very hard to follow. do you suggest any books or food stores that can be any help?
his doctor hasn’t really been any help. thank you.”

Hi Kattie,

I hear your struggle! My son gagged for a long time too, (and had to drink water to wash down every bite) but no longer does it. My suggestion as far as food is to see if your local grocery store or health food store has a section with gluten-free items. There are alternatives to his favorite foods. Instead of cheerios, we use “Perky O’s” made by Perky’s 100% Natural brand. I think it is this brand that also makes a cereal called Nutty Rice (no nuts in it though). It is not like Cheerios, but so good that it is worth mentioning. For pasta, there are lots of brands that make rice pasta – we particularly like the rice pasta (spaghetti, penne, spirals) made by Mrs. Leeper’s brand. I use coconut oil on the pasta with a bit of Celtic Sea Salt and it tastes great!

There are also many gluten-free breads. Food for Life makes great gluten-free bread and has many choices. Also, Enjoy Life brand makes fantastic gluten-free cereals and snack bars. We use Rice Milk – make sure it is labeled as Gluten Free. We use Rice Dream, Original Classic (unflavored). We do NOT use the flavored or enriched because these have items which have been shown to be excitotoxins and harm the brain. (See writings by Dr. Russell Blaylock and Amy Yasko).

As far as cheese goes, I haven’t found a casein-free cheese. Most soy cheese contains caseinate or casein. Also, most DAN doctors advocate not having soy because it is problematic for children with autism.

I would then start slowly incorporating different tastes – just a bite at at time of other foods. Try some yummy vegetables like butternut squash with cinnamon and a little bit of stevia for sweetness. Or, cauliflower steamed very soft and mashed with oil, a touch of rice milk, and salt.  You can also adapt regular recipes to be gluten-free/casein-free.  For a long time, my son did not like the texture of red meat or chicken so I created recipes for gluten-free, casein-free meatballs and chicken meatballs (or hamburgers). You can also make them egg-free with egg replacer. In the coming weeks, I will share some of my invented recipes that are easy (15 minutes or less!), so check back here.

The thing that helped my son the most, however, was addressing the physical causes for the gagging and food aversions. I obviously do not know what is causing these problems for your son. I can only share with you what worked for my son.  I put my son on a high-quality multivitamin and mineral supplement to address deficiencies. I noticed that this helped with many of his sensory issues, including his aversions to foods (ex. he then liked avocadoes, which he previously choked on). I also found that one of the most-helpful things for my son early on in treatment was digestive enzymes, taken with everything he ate. They helped him to actually digest the food he was eating, and his behavior relating to food dramatically improved within three weeks!

It is a struggle, but keep trying. The extra effort is worth it. Now my son gladly eats everything I give him – he even LOVES swiss chard and broccoli!

Blessings and endurance to you as you press on!

“Therefore, my beloved bretheren, be steadfast, immovable, always abounding in the work of the Lord, knowing that your toil is not in vain in the Lord.” 1 Corin. 15:58 NASB

 

July 14, 2008 at 9:16 pm 9 comments

Press On! (A Testimony About Probiotics)

Okay, I must confess!  I have been there – the place where I have felt that I just can’t press on another moment in the fight for healing for my son with autism.  When we first began working on the intestinal imbalances (yeast and harmful bacteria), the detox reactions were sometimes so severe that I wasn’t sure it was worth it!  Now that we are on the other side of it, I am grateful we pressed through because of the progress made.  We noticed significant improvement in my son’s behavior when we cleaned up his gut.  However, in the midst of the various treatments, I found myself physically, emotionally, and spiritually drained!   

One of the most difficult struggles I found was his “disagreeableness.”  Oh, I am sure that is not a word, but it describes his pre-detox and during-detox behavior best.  He would constantly argue and fuss about everything, sometimes it seemed just for the sake of being disagreeable.   

The first thing we did to address my son’s intestinal imbalances was to give him a high-quality and high-potency probiotic (beneficial bacteria).  At first, my son was so toxic that we could only give it to him every third day.  Any more than that would cause his face and ears to flush and would send him to the floor in one tantrum after another.  I think it was seeing this severe reaction that made me realize just how much he needed it!  After a couple of weeks, we increased the dose to every other day, then to every day.  Finally, we began a daily dose that was double and then triple the original dose.  During the time when there was “die-off” of the yeast and harmful bacteria, his behavior actually got much worse.  He walked around on his toes all day long, he argued at everything, or refused to talk, and he was aggressive and mean to everyone.

But, after the yeast and bacteria in my son’s intestines started dying off, his behavior improved!  He became less hyper, less frustrated, less aggressive, and, yes, he actually became “agreeable!” I felt like a huge weight had lifted!  I was absolutely amazed at how much intestinal health (or lack of it) can affect mood and behavior! 

Since that time, I have learned that the intestines (or the “gut”) is sometimes referred to as a “second brain” and has a big part in serotonin levels.  Also, yeast and bacteria put of toxic by-products, which enter the blood stream and can affect the brain.  No wonder  my son became agreeable when his gut became balanced! 

I believe probiotics are such an enormous part of creating and maintaining good gut health and, therefore, overall wellness.  I am now such a firm believer in them that when my second son was born, I began giving him high doses of probiotics (formulated for infants, and casein-free) when he was only hours old.  Our entire family now takes high doses of probiotics – we have seen their benefits and will always make them a part of our foundation for healthy living!  Press on!  Blessings to you and your family!

“For I press on toward the goal for the prize of the upward call of God in Christ Jesus.”  Philippians 3:14 NASB

 

 

June 10, 2008 at 10:14 pm 8 comments

Article by David Kirby “Government Concedes Vaccine-Autism Case in Federal Court – Now What?”

Unfortunately, it seems federal law has virtually eliminated the right of children injured by vaccines to have their cases heard by a jury of their peers.  Instead, vaccine injury cases are heard before a federal Special Masters court, commonly referred to as “Vaccine Court.”  Recently, in one vaccine-autism case, the government conceded a causal link between a vaccine and autism.  David Kirby, author of Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy (St. Martins Press 2005) gives a thought-provoking account of this concession in the following article which is posted here, by permission, in its entirety:     

Government Concedes Vaccine-Autism Case in Federal Court – Now What?

Posted February 25, 2008 | 12:42 PM (EST)

By David Kirby The Huffington Post

http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html

After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the Court of Federal Claims.

The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.

The claim, one of 4,900 autism cases currently pending in Federal “Vaccine Court,” was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the “defendant” in all Vaccine Court cases.

The child’s claim against the government — that mercury-containing vaccines were the cause of her autism — was supposed to be one of three “test cases” for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.

Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and “concluded that compensation is appropriate.”

The doctors conceded that the child was healthy and developing normally until her 18-month well-baby visit, when she received vaccinations against nine different diseases all at once (two contained thimerosal).

Days later, the girl began spiraling downward into a cascade of illnesses and setbacks that, within months, presented as symptoms of autism, including: No response to verbal direction; loss of language skills; no eye contact; loss of “relatedness;” insomnia; incessant screaming; arching; and “watching the florescent lights repeatedly during examination.”

Seven months after vaccination, the patient was diagnosed by Dr. Andrew Zimmerman, a leading neurologist at the Kennedy Krieger Children’s Hospital Neurology Clinic, with “regressive encephalopathy (brain disease) with features consistent with autistic spectrum disorder, following normal development.” The girl also met the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) official criteria for autism.

In its written concession, the government said the child had a pre-existing mitochondrial disorder that was “aggravated” by her shots, and which ultimately resulted in an ASD diagnosis.

“The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder,” the concession says, “which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD.”

This statement is good news for the girl and her family, who will now be compensated for the lifetime of care she will require. But its implications for the larger vaccine-autism debate, and for public health policy in general, are not as certain.

In fact, the government’s concession seems to raise more questions than it answers.

1) Is there a connection between vaccines, mitochondrial disorders and a diagnosis of autism, at least in some cases?

Mitochondria, you may recall from biology class, are the little powerhouses within cells that convert food into electrical energy, partly through a complex process called “oxidative phosphorylation.” If this process is impaired, mitochondrial disorder will ensue.

The child in this case had several markers for Mt disease, which was confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor muscle tone, poor food digestion and bowel problems, something found in many children diagnosed with autism.

But mitochondrial disorders are rare in the general population, affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases filed in Vaccine Court, this case should be the one and only, extremely rare instance of Mt disease in all the autism proceedings.

But it is not.

Mitochondrial disorders are now thought to be the most common disease associated with ASD. Some journal articles and other analyses have estimated that 10% to 20% of all autism cases may involve mitochondrial disorders, which would make them one thousand times more common among people with ASD than the general population.

Another article, published in the Journal of Child Neurology and co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger Institute autism patients studied had one marker for impaired oxidative phosphorylation, and 47% had a second marker.

The authors — who reported on a case-study of the same autism claim conceded in Vaccine Court — noted that “children who have (mitochondrial-related) dysfunctional cellular energy metabolism might be more prone to undergo autistic regression between 18 and 30 months of age if they also have infections or immunizations at the same time.”

An interesting aspect of Mt disease in autism is that, with ASD, the mitochondrial disease seems to be milder than in “classic” cases of Mt disorder. In fact, classic Mt disease is almost always inherited, either passed down by the mother through mitochondrial DNA, or by both parents through nuclear DNA.

In autism-related Mt disease, however, the disorder is not typically found in other family members, and instead appears to be largely of the sporadic variety, which may now account for 75% of all mitochondrial disorders.

Meanwhile, an informal survey of seven families of children with cases currently pending in Vaccine Court revealed that all seven showed markers for mitochondrial dysfunction, dating back to their earliest medical tests. The facts in all seven claims mirror the case just conceded by the government: Normal development followed by vaccination, immediate illness, and rapid decline culminating in an autism diagnosis.

2) With 4,900 cases pending, and more coming, will the government concede those with underlying Mt disease — and if it not, will the Court award compensation?

The Court will soon begin processing the 4900 cases pending before it. What if 10% to 20% of them can demonstrate the same Mt disease and same set of facts as those in the conceded case? Would the government be obliged to concede 500, or even 1,000 cases? What impact would that have on public opinion? And is there enough money currently in the vaccine injury fund to cover so many settlements?

When asked for a comment last week about the court settlement, a spokesman for HHS furnished the following written statement:

“DVIC has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim. Accordingly, in every case under the Vaccine Act, DVIC has maintained the position that vaccines do not cause autism, and has never concluded in any case that autism was caused by vaccination.”

3) If the government is claiming that vaccines did not “cause” autism, but instead aggravated a condition to “manifest” as autism, isn’t that a very fine distinction?

For most affected families, such linguistic gymnastics is not so important. And even if a vaccine injury “manifested” as autism in only one case, isn’t that still a significant development worthy of informing the public?

On the other hand, perhaps what the government is claiming is that vaccination resulted in the symptoms of autism, but not in an actual, factually correct diagnosis of autism itself.

4) If the government is claiming that this child does NOT have autism, then how many other children might also have something else that merely “mimics” autism?

Is it possible that 10%-20% of the cases that we now label as “autism,” are not autism at all, but rather some previously undefined “look-alike” syndrome that merely presents as “features” of autism?

This question gets to the heart of what autism actually is. The disorder is defined solely as a collection of features, nothing more. If you have the features (and the diagnosis), you have the disorder. The underlying biology is the great unknown.

But let’s say the government does determine that these kids don’t have actual “autism” (something I speculated on HuffPost a year ago). Then shouldn’t the Feds go back and test all people with ASD for impaired oxidative phosphorylation, perhaps reclassifying many of them?

If so, will we then see “autism” cases drop by tens, if not hundreds of thousands of people? Will there be a corresponding ascension of a newly described disorder, perhaps something like “Vaccine Aggravated Mitochondrial Disease with Features of ASD?”

And if this child was technically “misdiagnosed” with DSM-IV autism by Dr Zimmerman, how does he feel about HHS doctors issuing a second opinion re-diagnosis of his patient, whom they presumably had neither met nor examined? (Zimmerman declined an interview).

And along those lines, aren’t Bush administration officials somewhat wary of making long-distance, retroactive diagnoses from Washington, given that the Terry Schiavo incident has not yet faded from national memory?

5) Was this child’s Mt disease caused by a genetic mutation, as the government implies, and wouldn’t that have manifested as “ASD features” anyway?

In the concession, the government notes that the patient had a “single nucleotide change” in the mitochondrial DNA gene T2387C, implying that this was the underlying cause of her manifested “features” of autism.

While it’s true that some inherited forms of Mt disease can manifest as developmental delays, (and even ASD in the form of Rhett Syndrome) these forms are linked to identified genetic mutations, of which T2387C is not involved. In fact little, if anything, is known about the function of this particular gene.

What’s more, there is no evidence that this girl, prior to vaccination, suffered from any kind of “disorder” at all- genetic, mitochondrial or otherwise. Some forms of Mt disease are so mild that the person is unaware of being affected. This perfectly developing girl may have had Mt disorder at the time of vaccination, but nobody detected, or even suspected it.

And, there is no evidence to suggest that this girl would have regressed into symptoms consistent with a DSM-IV autism diagnosis without her vaccinations. If there was such evidence, then why on earth would these extremely well-funded government attorneys compensate this alleged injury in Vaccine Court? Why wouldn’t they move to dismiss, or at least fight the case at trial?

6) What are the implications for research?

The concession raises at least two critical research questions: What are the causes of Mt dysfunction; and how could vaccines aggravate that dysfunction to the point of “autistic features?”

While some Mt disorders are clearly inherited, the “sporadic” form is thought to account for 75% of all cases, according to the United Mitochondrial Disease Foundation. So what causes sporadic Mt disease? “Medicines or other toxins,” says the Cleveland Clinic, a leading authority on the subject.

Use of the AIDS drug AZT, for example, can cause Mt disorders by deleting large segments of mitochondrial DNA. If that is the case, might other exposures to drugs or toxins (i.e., thimerosal, mercury in fish, air pollution, pesticides, live viruses) also cause sporadic Mt disease in certain subsets of children, through similar genotoxic mechanisms?

Among the prime cellular targets of mercury are mitochondria, and thimerosal-induced cell death has been associated with the depolarization of mitochondrial membrane, according to the International Journal of Molecular Medicine among several others. (Coincidently, the first case of Mt disease was diagnosed in 1959, just 15 years after the first autism case was named, and two decades after thimerosal’s introduction as a vaccine preservative.)

Regardless of its cause, shouldn’t HHS sponsor research into Mt disease and the biological mechanisms by which vaccines could aggravate the disorder? We still do not know what it was, exactly, about this girl’s vaccines that aggravated her condition. Was it the thimerosal? The three live viruses? The two attenuated viruses? Other ingredients like aluminum? A combination of the above?

And of course, if vaccine injuries can aggravate Mt disease to the point of manifesting as autism features, then what other underlying disorders or conditions (genetic, autoimmune, allergic, etc.) might also be aggravated to the same extent?

7) What are the implications for medicine and public health?

Should the government develop and approve new treatments for “aggravated mitochondrial disease with ASD features?” Interestingly, many of the treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin B-12, lipoic acid, biotin, dietary changes, etc.) are part of the alternative treatment regimen that many parents use on their children with ASD.

And, if a significant minority of autism cases can be linked to Mt disease and vaccines, shouldn’t these products one day carry an FDA Black Box warning label, and shouldn’t children with Mt disorders be exempt from mandatory immunization?

8 ) What are the implications for the vaccine-autism debate?

It’s too early to tell. But this concession could conceivably make it more difficult for some officials to continue insisting there is “absolutely no link” between vaccines and autism.

It also puts the Federal Government’s Vaccine Court defense strategy somewhat into jeopardy. DOJ lawyers and witnesses have argued that autism is genetic, with no evidence to support an environmental component. And, they insist, it’s simply impossible to construct a chain of events linking immunizations to the disorder.

Government officials may need to rethink their legal strategy, as well as their public relations campaigns, given their own slightly contradictory concession in this case.

9) What is the bottom line here?

The public, (including world leaders) will demand to know what is going on inside the US Federal health establishment. Yes, as of now, n=1, a solitary vaccine-autism concession. But what if n=10% or 20%? Who will pay to clean up that mess?

The significance of this concession will unfortunately be fought over in the usual, vitriolic way — and I fully expect to be slammed for even raising these questions. Despite that, the language of this concession cannot be changed, or swept away.

Its key words are “aggravated” and “manifested.” Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.

When a kid with peanut allergy eats a peanut and dies, we don’t say “his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death.”

No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.

Many people look forward to hearing more from HHS officials about why they are settling this claim. But whatever their explanation, they cannot change the fundamental facts of this extraordinary case:

The United State government is compensating at least one child for vaccine injuries that resulted in a diagnosis of autism.

And that is big news, no matter how you want to say it.

NOTE: Full text of the government’s statement is posted here http://www.huffingtonpost.com/david-kirby/every-american-should-rea_b_88558.html.

David Kirby is the author of “Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy” (St. Martins Press 2005).   

March 3, 2008 at 10:28 pm 2 comments

Documentary on Recovery from Autism – “Waking up Baxter”

This documentary on the recovery of a young boy named Baxter is so amazing and well done that I had to share it!  Click on the link below:

www.wakingupbaxter.com

 Thanks to Karim Cherif for sharing it!

February 18, 2008 at 2:55 pm Leave a comment

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Autism-Changing Tomorrow (ACT) blog is maintained to provide a place where ideas and thoughts relating to autism and treatments for autism may be exchanged. The information on Autism-Changing Tomorrow is of a general nature and is provided with the understanding that ACT or any individuals or entities associated with ACT are not engaged in rendering medical advice or recommendations. Any information in the postings, messages, articles, comments, and publications in or on the ACT blog must not be considered medical advice or recommendations and such information should not be considered a substitute for consultation with a board certified physician to address individual medical needs.