Archive | June 2012

Autism&Vaccines:The Greater Good

I blogged about the movie, The Greater Good, a while back.  It is amazingly informative and worth a watch.  My words of caution are that pediatricians do not know all.  Newborns do not need a Hep B shot on their day of birth.  Why not look into an alternative vaccination schedule to keep our kids healthy?  The movie explains the politics behind vaccines, and it is obvious, our kids are not in the priority to these big pharmaceutical companies.  It’s all about the $$$.  To all my new mommy friends out there, see this movie!  I haven’t found it free anywhere, but it’s available to purchase at http://www.greatergoodmovie.org/.  The best $20 you’ve ever spent.

From http://www.ageofautism.com

Alex Jones on “The Greater Good” Vaccination Documentary

Greater-good-movie

June 27, 2012 Leslie Manookian was interviewed about vaccine safety and her phenomenal new movie, “The Greater Good.”on the Alex Jones Show.

It’s about a half hour long and very informative.  Leslie told me that during and immediately following the show they sold 1,500 DVD’s of the movie!  She got two interview requests after the show also.  What more proof could you want that the vaccine controversy will only get worse?

Anne Dachel.

It’s So Much More Than Just Autism!

I love my morning dose of The Thinking Mom’s Revolution.  Like them on Facebook, and get their almost daily inspiring blog posts.  Today’s post really resonated.  For all you parents out there dealing with ADHD, Allergies, Autism, Asthma, chronically sick kids, they CAN heal, but they need your help.  There is so much stacked against us…vaccine injuries, Genetically Modified Foods, Mercury dental fillings and toxins everywhere…but we can do it!

 

At TMR we rally around our fight for autism prevention and healing awareness, but each and every one of us knows that the issue is much bigger than just autism.  Cellular toxicity resulting from vaccines, our toxic food supply and/or irresponsible dentistry causes not only autism but also a host of other childhood diseases.  Perhaps you’ve heard of these?  Allergies, asthma, ADD/ADHD, learning disabilities, general anxiety, ODD, diabetes and many other chronic illnesses share the same root cause as autism.

Autism is so *visible* because the impairments our children suffer manifest themselves in anti-social or otherwise odd behavior.  It often impairs their ability to lead independent lives.  It gets more media attention because our taxpayer dollars are used to fund the ever-increasing educational and other supports needed to care for this new generation of special needs kids.

Yet the autism statistics –1 in 88 children — pale in comparison with other childhood diseases.   According to the CDC 1 in 10 boys are diagnosed with ADHD.  1 in 10.  And 1 in 11 children are diagnosed with asthma.  WebMD reports the number of people in the US who have allergy symptoms is 1 in 5.  The Professor said it best when she said:  “This country spends more money on healthcare—including all that preventative healthcare—per capita than any other country, and yet our kids are getting sicker and sicker.”

 

An unhealthy and often toxic food supply filled with unnecessary chemicals, hormones and antibiotics. The irresponsible use of amalgam dental fillings that are made 50% of mercury.

And vaccines loaded with toxic fillers and sometimes mercury.

This overload of toxins overwhelms the liver and other detoxification systems leaving toxins to circulate around the body – interfering with proper brain and other bodily functions.  These toxins settle in tissues leading to a condition of chronic cellular toxicity and immune dysfunction.  Based on an individual’s genetic predisposition and WHERE in your body some of the more toxic substances (like mercury) have settled, this condition of chronic cellular toxicity may result in an autism spectrum disorder in one person, or allergies, asthma, or ADHD in another person.

 

THEY ALL HAVE THE SAME ROOT CAUSE!  (sorry for shouting)

The good news is that there is hope for healing.  The children of TMR are getting better.  They are healing.  And so can the millions of children with other childhood diseases.  Because the cause of the disease is the same. So the approach to healing will be the same.  Luv Bug and MamaBear both shared stories of healing from asthma.  The Professor  details her story of healing from both a speech disorder and ADHD.

There is hope.

How much bigger could our impact be if all those parents of children with allergies, asthma, ADHD and other childhood diseases — if those parents understood *how* their child become sick?  Imagine if those parents started THINKing and healing their children…

Children with allergies, asthma and ADHD, etc. CAN GET BETTER.

We need to spread the word.

Share it.  Spread it.  Pass it on.

~Sugah

MUAH!

Dr. Andrew Levinson

Misha and I saw Dr. Levinson speak at the Autism Research Institute back in April.  He was one of my favorite speakers and I learned so much from him about the role of environment in Autism and how to clean it up.  His practice is in Florida.  If we were closer, he would be a doctor of choice…http://vitalitywellness.com/

www.frortheloveofb.blogspot.com

I love stumbling upon blogs of other parents who have paved the way in recovering their children.  It’s bookmarked, and tonight, when I get some down time, I’ll be reading through this mother’s posts.  I like her most recent post post.  She’s not alone…I’m ANGRY too!!  My anger is channeled into maintaining my focus on Jackson’s treatment.  I can’t wait for the day I can walk into our former pediatrician’s office to see the look on his face when he sees Jackson, a changed and recovered boy.  That day will come.

FYI, PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections

THURSDAY, JUNE 21, 2012

The One Where I Lose My Cool

Yesterday was good.  Tonight, I’m struggling.

It’s just hitting me.  The enormity of it all.  All the information to wade through.  All the opinions that seem to clash with each other.  One doc says a million supplements and diet changes.  Others say antibiotics and ibuprofen (that B’s system can’t tolerate).  Then there’s IVIG ($$$)….repeatedly.  Or how about homeopathy.  Have you tried GAPS, or perhaps the low oxalate diet, SCD?  Silver?  Belladonna? 

I listen to other PANDAS parents.  Doctors saying they don’t believe in PANDAS…but here try this band aid psych med.  GI docs telling parents it must all be in their heads when their children have severe abdominal pain.  Children misdiagnosed as Tourettes and put on medications that exacerbate the PANDAS. 

Bladder issues.  Food allergy?  Inflammation?  Information I read today: The basal ganglia controls the internal bladder sphincter.  PANDAS attacks the basal ganglia.  It’s the SAME thing that happens to people with Parkinsons.  Wonderful.  Do you know what else is associated with Parkinsons?  Aluminum poisoning.  All I know is that my child was potty trained at 2.  He’ll turn 6 on Saturday and he’s not anymore.  AND THAT IS NOT OKAY! 

And it feels like this world goes on and doesn’t care about all these hurting kids.  They are brushed under the rug.  We numb ourselves with pop culture, food, prescription drugs, idiotic right verses left politics.   The apathy is astounding.

 
 Autism, ADD, ODD, Allergies, Asthma, Juvenile Type 1 diabetes, Juvenile Rheumatoid Arthritis, Eczema, GI issues, PANDAS, Childhood Schizophrenia, Food Allergies.  When did this become the norm?  When did it become okay?

Erik and I were on a radio program and the topic of how to approach all this came up.  My answer was that I’m really nice about it because people won’t listen when you’re angry.  The truth is, I AM angry.  I’m angry at the medical establishment that turns their back on our children.  At doctors who say “I don’t believe it” when they are too proud to admit they don’t understand and haven’t taken the time to research.  I’m angry at our insurance policy that specifically states that it will not cover PANDAS.  I angry that the CDC recommends an untested vaccine schedule.  I’m angry that drug companies are allowed to pass off “safety tests” of individual vaccines without a true placebo.  I’m angry that this doesn’t seem to bother anyone until it’s too late.  I’m angry that we are perfectly okay with throwing babies and young children under the bus for the good of everyone.  I’m angry that I can’t seem to hold a trivial conversation anymore.  I’m angry that there are groups of people who write hateful things about parents in my shoes because we utilize biomedical treatments.  I’m angry that we have to because the medical community has turned their backs on our children.  I’m angry that in the big scheme of things, my child doesn’t matter to this world.  I’m angry that friends who once trusted me, consider me crazy now because I researched my son’s condition and came to an unpopular conclusion….confirmed by lab results.  I’m sad that I have to watch babies close to us get chronic ear infections, diarrhea, eczema, allergy shiners, constipation….and I know the parents don’t want to listen to anything I have to say.  So I have to watch them travel the same path.  I’m angry that my child has to endure so much.  Yes, I am ANGRY! 

But I am not angry at God.  He has lifted us up and carried us through this.  We have not waded through these waters on our own strength.  A veil has been lifted from my eyes.  I am no longer oblivious to the evil in this world.  It makes me so thankful that God has prepared a place for us.  A place where there is no evil, greed, selfishness.  I am that much more thankful for His goodness and mercy.  All this ugly is a blink of an eye…but our eternity is beautiful.  I’ll hang my heart on that before I turn in for the night.  

Cholestyramine

Every morning, Jackson, Misha and I get to wake up and drink our glass of Cholestyramine.  One scoop is mixed with 12 ounces of warm water, taken on an empty stomach, and thirty minutes after, we’re supposed to eat something fatty (for me, it’s almond butter and banana).  The drink’s grainy, lemony taste isn’t wonderful, but it’s not the worst. I do have to say that this is the one medicine Jackson hates:(  Misha has to hold him while I put the oral syringe in his mouth and squirt away.  It’s not the most fun to wake up to every morning.  You can imagine how excited we were (note the sarcasm) when our LLMD said we need to now up the Cholestyramine to 3 times a day!  Ick!  I really only feel bad for Jackson…now, our schedule is Cholesyramine right when Jackson wakes up in the morning (6:30am), right after nap (2:30pm) and right before dinner (5:30pm).  If it’s taking all the bad stuff out of Jack’s body, then I’m fine with it.  Bring on the Cholestyramine!
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From  http://www.survivingmold.com/docs/CSM_Fact_Sheet.pdf

What to Expect from Cholestyramine (CSM)

Cholestyramine (CSM) is an FDA-approved medication used to lower elevated levels of cholesterol. It has been used safely for over forty years in millions of patients who have taken the medication for extended periods of time. You have been given a prescription for CSM to be used for only a short period of time to treat your chronic, biotoxin-associated illness. The FDA (6/28/99) ruled that there was no reason to expect an increased risk to health from use of CSM in a group of patients who have biotoxin illnesses (such as Pfiesteria, ciguatera, mold, Post-Lyme) and blue green algae syndromes compared to those who don’t. Therefore such use is exempt form repeating FDA clinical trials to show safety. Your prescription is given to you under this FDA exemption.

This use of CSM is called “off-label.” Off-label use is completely legal, ethical and is part of standard medical practice. There might be a few physicians somewhere in the US who don’t use drugs off-label but I haven’t met any yet. You need to know that your prescription is for CSM being used off-label.

Cholestyramine is not absorbed. It helps you get better but it adds nothing to you. All it does is take things away. Provided that CSM is not taken with food, it binds cholesterol, bile salts and biotoxins in the small intestine. Because it binds biotoxins tightly, the biotoxins cannot be reabsorbed; the CSM-biotoxin complex is excreted harmlessly in the stool. Provided there is no re-exposure to sources of biotoxin or reacquisition of biotoxin, the CSM treatment will remove the biotoxin from tissues over time, providing the first step needed to resolve the chronic, biotoxin-associated illness. The illnesses of some patients can be resolved in two weeks, but depending on the amount of biotoxin in your body, and the inflammatory problems initiated by exposure to biotoxins and inflammagens, the time to regaining health may be longer. CSM will not correct presence of MRCoNS, low VEGF, high TGF beta-1 or low levels of CD4CD25 cells, for example.

Used at the FDA approved dose of 9 grams of CSM, or 4 grams of Questran Light (note this product contains aspartame), taken 4 times a day, there are gastrointestinal side effects that are potentially annoying but are usually not dangerous and should not interfere with your treatment program. Some people who are sensitive to chemicals might want to have compounded form of CSM (“MCS-CSM”) that has nothing other than Stevia in it. Some people who tend to be constipated even before using CSM will need to be very careful to prevent CSM making their stools become too hard, as such brick-like stools can cause bleeding from the rectum when they pass out of the body. Our treatment protocol attempts to anticipate the possible troublesome side effects; you will be given additional medications to keep on hand “just in case.”

Reflux of stomach acid, also called heartburn or indigestion, is commonly experienced early on in treatment. The symptom abates spontaneously in most patients within a few days. A medication to stop over-production of stomach acid, taken before beginning the CSM doses, can prevent heartburn. Mixing the CSM in apple juice, cranberry juice or dissolving CSM, first in luke-warm water and then adding ice, helps reduce heartburn. Bloating and belching can also be cause initially by CSM. Fortunately, those side effects are rarely a major problem.

As mentioned, constipation is commonly seen. Many patients simply increase their consumption of fruit or fiber products, such a psyllium (Metamucil), to avoid this problem. A non-absorbable, sweet tasting liquid, Miralax, available without a prescription, can hold water in stools, making bowel movements soft, thereby preventing constipation. Even though Miralax tastes sweet, it will not make your blood sugar rise or make you gain weight.

Because many patients with chronic biotoxin associated illnesses have diarrhea or more frequent, softer stools, the constipating side effect of CSM can become a welcome, early benefit.
CSM has been extensively tested in multiple clinical trials involving patients with chronic, biotoxin associated illnesses. The benefit of use of CSM has been confirmed by two double-blinded, placebo-controlled crossover studies. To date we have looked for, but not found benefit from CSM substitutes such as charcoal, chitosan, clay in several forms or any herbal remedy. We will use Welchol as a CSM substitute for those unable to take CSM. It is taken with food in a pill form. It is far easier to take but it is only 25% as effective as CSM.

Your physician will be following your case carefully. If you have questions regarding any phase of your treatment, please notify your doctor’s office promptly. You will be given special tests of visual contrast sensitivity (VCS) on a regular basis. Your treatment will continue until your symptoms have resolved and your VCS is normal. Your physician will review your case in detail as your treatment progresses.

CSM Protocol

  1. On an empty stomach, take one scoop of CSM (9 grams), mix with water, or juice, 4-6 oz.
  2. Stir well and swallow. Add more liquid, repeat 1 above until done.
  3. Drink an extra 4-6 oz of liquid.
  4. After 30 minutes, you may eat or take meds (wait at least 2 hours before taking thyroxine, digitalis, theophylline, Coumadin and others; ask your doctor for information).
  5. Take CSM 4 times a day!
  6. If you eat first, wait at least 60 minutes before taking your next CSM.
  7. Reflux, constipation, bloating and bowel distress are not unusual.
  8. Use acid blocking medications as needed.
  9. Use Miralax to relieve constipation

Bills, Bills, Bills

Who knew this adventure of helping Jackson overcome Autism/Lyme Disease would be so costly, financially and time-wise.  I was more than willing/happy to give up a year of teaching to concentrate on helping Jackson, but living in California and the Silicon Valley,  it’s almost expected that both parents work full time.  My parents and Misha’s have been amazingly, overly generous with their resources and have dedicated so much money to Jackson and our family’s cause.  Every LLMD doctor’s visit is out of pocket.  Every supplement, herb and pricey prescription copays are out of pocket.  I don’t have an ongoing tally, but I’m sure we are well beyond $10,000 by now.  Probably even $15,000.  Actually, with all the mold stuff, probably more like $20,000.  Misha and I are so incredibly thankful to our parents.  They could’ve had 20 vacations around the world by now, but they are committed to seeing Jackson recover.  I stay strong every day and do what needs to be done because we are all so invested in Jackson.  We do submit our office visit receipts to our insurance company, but on average, out of $1,000 we turn in, we get back about $100.   Below is our latest stack of LLMD visit bills that we mailed today for reimbursement.  I don’t even really keep track of what we pay and what we get back from insurance because it’s so minimal.

Pardon the old, dump-bound pee-stained mattress below, but I’ve laid out the empty medication/supplement/herb bottles we’ve been through.  Just one of those little one ounce herb droppers is $100.  I think I counted 20 of them, so right there is a significant chunk of change.  I know this time, effort, sacrifice and money is worth it, and recovery is coming.  Jackson is worth it, the time is now, and on we go.

So many people love you, Jackson!  Keep up the fight!

Valtrex, Day 2

The past six months, since I read Jenny McCarthy’s books, and found out about Stan Kurtz and his son, Ethan, I became part of the ‘mb12valtrex’ Yahoo group that Stan started.  It is then that I became familiar with Valtrex as a part of a protocol that was helping so many autistic children.  I have read many Yahoo posts from parents who experienced many different ‘die off’ symptoms, from fever, regression, rashes, poop-smearing, fatigue, etc.  So far with Jackson, on 250mg once in the morning, I haven’t noticed any changes.  Jackson has never shown any noticeable herx reactions to any of his meds or supplements, so I’m eager to see if he responds at all to Valtrex.

Jackson had his first dentist appointment this morning, an appointment I’ve been putting off forever since I knew how uncooperative he’d be.  It’s not that he’s uncooperative, he just doesn’t like being forced to do something he doesn’t understand.  He had no problem being in the office and even sitting in the big chair with and without me (I wish I had taken a picture, he was so cute!), but trying to get him to open his mouth for the dentist to look inside just wasn’t going to happen.   We tried the iPad, him in my lap, me holding him down, prying his mouth open, but it wasn’t going to happen.  Right now, the dentist is the least of my concerns.  We made an appointment for six months from now, hoping to the high heavens above that we’ll have made some gains and Jackson will be able to open his mouth willingly on his own.  Time will tell.  We left so quickly out of the dentist’s office that I didn’t notice the two Thomas kaleidoscopes in Jackson’s hands that we’ll be borrowing (see pictures below).

Jackson and I went to the park after the dentist.  The park is adjacent to a dog park, so after going down the slide once, Jackson wandered over to the dog are and stood behind the fence, watching the dogs.  I don’t know if he was just zoning out or really interested in the dogs, but he stayed there about 10 minutes, quiet, content, staring.  We made our way back to the park and Jackson mostly wandered around, occasionally starring at other kids playing.  After swinging, Jackson got down and spotted a graham cracker on the ground.  He immediately knew he wanted it, reached down and picked it up until meanie mommy took it from him.  Not GFCF AND dirty, no, no, no.  Jackson got super mad, stomping his feet and whining.  I tried to distract him and point him back to the park, but he was done, his mind was set on the graham cracker.  Our park trip was over:(