Autism Recovery Mom-Fighting Autism on the Cheap

Whole Foods Organic Food Made In China?

Have any of you checked the back of the frozen organic veggies lately?  Whole Foods Brand is mostly from China.  Now I am not too sure I feel comfortable paying the big bucks for Made In China organic veggies.  I spoke with the local Whole Foods and can't say I feel any better about the situation.  They assured me that their organic veggies meet all the requirements including more stringent requirements than the FDA.  But I am still unclear on who checks and how often they check.  Who flies to China and verifies? 

I read a business article in Business Week regarding organic food and Wal-Mart.  Wal-Mart purchased a lot of organic foods in china.  However, they sent inspectors over and discovered that the products did not follow the standards set by the FDA.  Wal-mart stopped buying organic food in China.

I don't feel comfortable about feeding my child non organic food and I certainly would never buy dog bones or food made in China.  So I do not think I am comfortable about buying Whole Foods organic frozen veggies. 

Lesson:    Read the labels even if it is labeled organic it may not meet your own personal requirements.

The New Health Care Bill Sucks When It Comes To Autism

1.    Autism is considered a severe mental illness in the bill.  what happened to the "new" scientific diagram that says autism is neuro biological?

2.    It does not require speech, occupational therapy or ABA for the treatment of autism and uses a vague whatever is medically necessary up to the same amount of other medical disorders.  The reason we passed Steven's Law is because insurance companies did not recognize ABA as medically necessary.  In our state, Medicaid only provides this level of care from ages of 3-5.  Some families have gone to court to get Hab M for older children. But there are no providers to provide hab M so in reality there is not care. 

It is my belief that if this bill passes our medical care will be significantly less than it is right now.  We currently can have competition. As we have seen in our state it is almost impossible for a parent to successful fight the state for covered services of medicaid.  We already know that we can not trust the state as they continually deny, lie or cut services.  The new insurance coverage will cover less that medicaid does now.  In my opinion, once you are dependent on the state you are trapped.  It is always easier to fight a private business than a huge government program.  EPSDT is already being parred down and this legislation will provide even less than we are currently covered under this state!  We need to give Steven's law a chance to shake out.  Many self funded companies are starting to agree to provide coverage and we are putting pressure on the agencies to accept insurance.  I believe within a few years we will have a state with good coverage.  We will not if this legislation passes!  The administration will set the criteria for coverage and they will throw our kids away.  I have spoken with physicians who care about our kids and all agree that this legislation will harm our children.  I agree!

Shock and Awe from 2006

Hi!

I wrote the below email in 2006 when I first started to work on my co morbid conditions project in Phoenix.  I am posting it so that you can all see how far we have come.  I had forgot how bad it was just 3 years ago.

*First, let me start with apologizing in the beginning for the length of this email. But I feel that there is a lot to learn today and want to share as much information as possible so that all of you can benefit from what we are doing with Phoenix Children's Hospital.   The first child to see all the doctor's from Phoenix Children's hospital has completed all of his tests. I think this has been an incredible learning experience for all involved in the project. In the beginning most did not know what they had to offer him or if they could help. This child is incredible ill and now everyone believes his mother and is saddened by the facts. This child has been diagnosed with SCAD a very rare metabolic disorder that is often misdiagnosed. There is actually a study in Britain that demonstrated that a subset of children diagnosed with autism never had it but had SCAD. This child has experienced developmental delays and possible permanent brain damage because of not having SCAD diagnosed in a timely manner. This child was also diagnosed this week with Primary Immune Dysfunction and will be receiving IVIG. The immunologist believes there is a good chance that the IVIG will help put his colitis in remission and could eliminate his seizures. These would be side benefits and we hope that it will do this but of course there is no guarantee. We also pray that the IVIG will help him developmentally but there really is no guarantee that it will work. I hope that all of you will keep this family and this child in your prayers.  

Now to the larger issues....  

1. We hope this fall to put out a newsletter to PCH that will then be forwarded to all pediatricians. We have several studies that we believe will educate the physicians so they can do a better job of helping our kids. I personally know that very good pediatricians do not believe that our kids have seizures, gastrointestinal disorders or metabolic disorders-They just have autism. We want to educate them to look beyond the autism and see the co-factors that could and are making some of our kids ill.   How you can help? If you suspect that your child has seizures or gastrointestinal issues you need to present a compelling case. This means having studies that demonstrate that these kids can and do have these problems and a list of reasons why you think your child may have it. You need to be respectful. You need to explain that you are not looking for them to cure the autism but want to make sure your child's medical care is being managed appropriately.   What not to do? Do not be emotional and do not go into long stories about your child. You need to be concise and you need to give bullet point reasons why you need their help. They do not need the whole store they just need enough facts to make a decision in your favor to run the tests. 

*My letter about co morbid conditions of autism was sent by the Arizona American Academy of Pediatrics to every pediatrician in the state.

2. Designer Labs-Okay this poor child had thousands of dollars of labs run but a DAN doctor. These were useless for this child for a variety of reasons including the doctor's inability to read them correctly, to order additional tests and to order basic tests paid by for regular insurance. These DAN lab tests may be useful for the nuance of supplements and autism biomedical treatment but they do not do a great job of screening for real medical disorders and issues not to mention they are expensive.   What do I recommend? Make sure you have really reviewed your child's medical care and ran every medical test that needs to be run through a FDA approved lab. If you suspect immune issues, see an immunologist for an immune panel. Take the supportive literature to your doctor and ask for a thyroid panel including TSH. Now I know personally that my pediatrician who is not the easiest to work with would even do this test. If you have lethargy or hypotonia ask for an organic acid test or better yet see a geneticist to rule out metabolic orders. You do not even have to pay for an organic acid test from a designer lab. Make the rounds. See  every specialist you can to rule out your child's issues.   What you need to do? Please Please be educated about what you are asking for and why. Please come to the appointment with all of your information and research about what you want and why. Try to bring an extra pair of hands to help with the child to you can really listen to what the doctor is saying and can actively participate in the discussion.   What not to do? Please do not bring designer labs to these doctors. They do not know how to read them or what they are used for and we look like weirdo's. PLEASE DO NOT BRING DESIGNER LABS IN AND ASK YOUR DOCTOR TO ORDER THEM. If you really want the Premier Autism Panel run, run it through your DAN doctor. If you go to the pediatrician or a specialist and demand that they treat the autism you will alienate them. YOU ARE THERE TO HAVE THEM INVESTIGATE AND TREAT THE CO-FACTORS OF AUTISM NOT AUTISM ITSELF. It is your obligation to be educated and know why and what you want. There is a place for DAN and a place for traditional medical care.   WHAT REALLY NOT TO DO? When Susan and I first looked for other chiropractic neurologists to recommend we really ran into trouble. Our original point was to make sure that you all had choice and were not forced to see Dr. George. Not because Dr. George was bad or not a good doctor. He certainly is a good doctor but because we believe that choice does a variety of things. Choice controls price, allows you to work with someone who makes you feel comfortable, allows you to pick someone who might take yourinsurance, etc. If you have a thyroid problem you have a choice of hundreds of endocrinologists not just one. We want to create this for our community. Anyway, within a week I received a phone call from Dr. Barry who was very upset. Many of you called him and trashed Dr. George and were very unprofessional as parents. This made it very difficult and put me and Susan in a very bad position. Dr. Barry ended up having a conversation with Dr. George and making the decision not to see our kids. We alienated a good doctor. This ruined a lot of work we had done. We do not want this to happen with PCH. You all have to be educated and knowledgeable and careful when you work with these doctors because your behavior impacts everyone else. Please do not misuse this project because all of you have to potential to alienate these doctors by your behavior.  

*Parents are now routinely able to get an organic acid test and other metabolic tests from their pediatrician or neurologist and immune panels from a immunologist. 

3. DAN Doctors. I am very pro DAN and pro alternative health. You all know this about me. However, the point of this project and this email to to educate you all. You need to manage your child's care. You need to do the research. You need to NOT BE LOYAL TO ANY DOCTOR DAN OR OTHERWISE. You need to make sure that you are ruling out all other issues. You can choose to do this with a DAN doctor but I recommend using a variety of doctors and take advantage of specialists. Knowledge is important and DAN doctors and not experts in anything other than DAN. Also, DAN doctors only need to attend one conference to be a DAN doctor. I am not saying that they can notbe helpful but there is a place for every doctor on your child's team. Some of your children are not complicated and some of them are and only you can decide what path you must follow. Please just make sure that your have done the research and know what you are doing.  Back to this child. This child was failed by a pediatrician, a developmental pediatrician and a DAN doctor. This child could have been diagnosed with this disorder by simply doing an organic acid test. A simply and inexpensive test could have stopped the damage to his little body and brain years ago. But no one wanted to look beyond the autism to see the sick little boy and now he has been permanently damaged. I want to use his story to educate all of you and all of the doctors in this valley.   Thank you for your time.    

Cynthia Macluskie

*Three years ago it was almost impossible to get a scope, a 24 hour EEG, IVIG paid for by insurance, and to get a mitochondrial screening.  Now all of these things are common place and easy to access in the valley.  I was at dinner the other night and 6 out of the 8 parents children are on IVIG paid for by insurance.  Phoenix Children's Hospital believes a 24 hour EEG is the minimum screening tool for our kids and acknowledges that our kids have seizure disorder.  We need to appreciate how far we have come.  We still have a way to go but we are so close and the momentum is moving in our direction. 

Thanks to all the parents who helped Susan and I on this project and to create change in the valley.  Now we are taking it on the road.  We are filming a documentary on co morbid conditions.  Can't wait to show you all.

Gotta run and film for our documentary.  Stay tuned!

Cynthia

How to Fight For Your Insurance Company

I read a great article in Smart Money about how to advocate against your insurance company.  These same strategies will work for advocating against the state at a fair hearing. They are simple and easy.

1.    Write a detailed letter of why the procedure, therapy or medicine should be covered.  Mark sure to include studies or articles that support your argument.  IF you can, include a letter of medical necessity from your physician and other professionals who could speak to this need.

2.    See another physician or therapist to get a second opinion.  If this physician agrees have them write a letter of medical necessity as well.  Consider asking your first physician to referred you for the second opinion.

3.    Stay calm and keep a journal.  Document every time you speak to someone, who they are, where they are from and what they said.  Fight to have your physician on the phone speaking directly to the medical director of your insurance company.

4.    Read your policy and look for loop holes that can help you get something approved.  It is important to know what your policy says as they are all different.  This is especially important when dealing with the state as most state employees do not know their own policy and misquote it often. 

So let me give you a couple of examples on how this would work.  The first example will be the state denying a second hour of speech or decreasing speech hours by half. This is what I would do:

1.    Evaluate honestly if your child really needs the hours and what you hope your child will gain from the hours. Do research to validate your need for the hours and what goals and skills will be gained with those hours.

2.    Get the primary care physician to write a script for the hours and ask the physician to give you a letter of medical necessity.  you can draft one for him and give it to him so that most of the work is done for him.

3.    Contact your developmental pediatrician and have them write a letter of medical necessity or report explaining why the service is needed.

4.    Contact the speech therapist and have her write a letter of medical necessity and a list of goals that will be worked on with the hours additional hours.

5.    Contact the occupational therapist and teacher at school (or any other professional who may be helpful) and see if they will write a letter of support for the additional hours or the need to keep the hours.

6.    Write a detailed list of why your child needs these hours.  What goals will be addressed and how this will affect the life and well being of your child.

7.    Submit all of this in your appeal.

8.    It is quite likely that your appeal will be denied.  File for a fair hearing.  Believe it or not only half the parents decided to go to fair hearing.  Most cases are settled at the hearing right before it starts.  The state believes it is better not to settle until the day of the hearing and the numbers bare that our.  Be sure to always ask for fair hearing.

9.    If you go to fair hearing try to get your pediatrician and therapist to testify over the phone.

10.    If your insurance company is the one denying you will want to have your doctor speak with the medical director and yourself. 

Good Luck!

Flu/Swine Flu

So I officially have the flu.  Could it be the swine flu?  Is it important to know? I decided to treat it like the swine flu. How funny is it to spend a week back east learning about vaccine issues and swine flu and catch the swine flu on the plane ride back. I know I caught it on the plane because 20 people flying from London got on the plane sneezing and hacking up a lung.  It was horrible.  I sat on the plane rejecting their germs in my mind but apparently that was not enough.  My body was already struggling as the conference was on the east coast.  I had to be up at 4:30 in the morning Phoenix time and then could not fall asleep at night as my system was out of sync. I also ate out the whole time so my diet was not clean and organic, as it usually is!

Anyway, I followed the directions I learned from the conference and am already on the mend.  Here are the important things I learned:

1.    Make sure to take vitamin D3.  You can get your levels tested by your doctor but most people can safely supplement without risk.  I tested Mark and I are we are both very low normal.  I am currently taking 8000 units to help my system fight off infection.

2.    Take vitamin C, a good multi vitamin and probiotic. I am on all three and just upped my vitamin C to 3000 units divided up through out the day.

3.    Homeopathic flu remedy.  Whole Foods sells a great brand.  Start taking this at first signs of illness.  I have been taking 4 times a day.

4.    If you feel ill treat yourself to a few days in bed.  According to the doctors at the conference, many get a secondary infection because they are not taking care of themselves.  I have canceled everything and am in bed for the second day.  Completely out of character for me.  I am giving myself permission to baby myself so that I can fend off this illness.

5.    Do not treat the fever.  That was one of the messages at the conference.  Fever helps fight off the infection.  By treating the fever you stop the body from doing it's job.  I ran a fever for the last day and a half.  My husband informed me that I smelled really bad.  Not something you want to hear.  I certainly would not share this information except that this is one of the things doctors said to look for at the conference.  By sweating out the toxins many will smell bad and that is a good sign that the body is doing what it is supposed to do.

6.    Stay hydrated.  It is really important to keep the fluids coming so that you can fight off the illness. Look for signs of dehydration and treat immediately.  If it is a child contact the doctor immediately.  I have also been juicing to help my body.  Carrots, apples, celery and ginger.  It is quite good!

I have been doing all of these things for over 24 hours and am already feeling better.  I am still in bed and plan to stay there until I am completely better.  I want to make sure my body is ready. I have also upped my husband and son's vitamin D, vitamin C, and probiotic.  I am also keeping them hydrated and juicing so they can fend off my germs. 

I hope this information helps you!  Stay tuned for more vaccine conference information tomorrow!

Cynthia

Super Natural Home by Beth Greer Part 2

Hi all,

This book is a quick and enlightening read.  I am through part one and two.  Below are just a few more facts listed in her book that I thought were really interesting.  Please consider picking it up and reading it!

"In 2007, a long term study from Italian cancer institute revealed that aspartame-a synthetic chemical composed of the amino acids phenlalanine and aspartic acid- increases the occurrence of lymphomas, leukemias and breast cancer in rats."

"The nine teaspoons of sugar contained in just one can of regular soda supply 180 calories, almost 10 percent of the daily calorie requirement for an average adult."

"To rid salmon of sea lice, fish farmers spike their feed with strong pesticide called emanectin benzoate, which when administered to rats and dogs caused tremors, spinal deterioration and muscle atrophy.  The farmed salmon in nearly every American supermarket may contain this pesticide, which on land is used to rid diseased trees of pine beetles. It is not a substance I want in my body. Tara Grescoe, Bottomfeeder."

"About one-third of the bottled water tested positive for significant chemical or bacterial contamination, exceeding levels allowed under a state or industry standard or guideline."

As you can see this book covers lots of material and it is an enjoyable read.  I still have part three to complete today. Take the time to clean up your body and your house.

Cynthia

Vaccine Tidbits

Pharmacuetical companies are going state to state to lobby for stricter vaccine laws and are making progress.  It is important we know what our state exemption laws and fight to keep them.  Currently, Arizona allows for a medical, religious and philosophical exemption.  We must fight to keep the philosophical exemption.  Back east they are holding sincerity interviews for the religious exemption and medical doctors are being threatened with with loss of licensure it making the medical exemption hard to get.  Also, the medical exemption will only protect you from certain vaccines since you can almost never get a blanket medical exemption.

Take the time to educate others.  We need to fight to keep our right of choice to vaccinate.  To do that we need to educate our friends and family.  Do your part and share your stories.  We can not afford to be  silent anymore!

Did you know that we require 48 shots from birth to kindergarten.

We mandated chickenpox vaccine even when a Japanese study that showed it would wear off by age 7.

Stay tuned for more information......

Super Natural Home by Beth Greer

I just started her book which is quite good.  I thought  I would post some interesting points from her book.  Here they are:

" given all these facts, why do farmers still use pesticides?  Well, mostly it's because they believe it will save more crops from insects, weeds and disease.  But that is not true.  Before the 1950's farmers lost about one third of their crops per year. Today, even with over 21,000 pesticide products to choose from and pesticide costs exceed $4 billion a year, farmers still lose one-third of their crops!"

Did you know that Whole Foods 365 Brand of organic California Vegetable Medley is a "product from China?"  That is an issue because China often lies about how they produce food.  Walmart stopped buying some organic produce from China when they flew over and saw that it was not being produced as promised.

"Potatoes: Switching to organic potatoes can have a big impact on your health as well as the planet because commercial potatoes are high in pesticides.  A 2006 USDA test found that 81 percent of potatoes tested still contained pesticides after being washed and peeled, and the potato has one of the highest pesticide contents of the 43 fruits and vegetables testing, according to the Environmental Working Group."

I will keep you updated on the interesting facts as I finish this book.  Great read.

Cynthia

Let's Talk About The Japanese

Peter Doshi did an amazing presentation on Japanese vaccine policy and I wanted to share some information that I found amazing.  I have emailed him to get his slides and hope to print more on what he spoke about but here are my notes.

Japan is similar to us as they are quite large with 130 million people. In 1994 Japan moved away from an aggressive schedule and stopped mandating all vaccines.  Currently, Japan has a list of vaccines that are recommend and a list of vaccines that are elective.  If a person chooses to get an elective vaccine they must pay out of pocket for this vaccine. 

New born babies in Japan are not vaccinated.  The first three month's of a baby's life is vaccine free.  By age 2 months in the United States a baby has 9 vaccines. In Japan the two recommended vaccines from ages 3-6 months are Polio and TB. Significantly less than our babies in America. By the age of 2 the Japanese schedule has 17 doses of 7 vaccines and in the United States our children have 33 doses of 14 vaccines.

In Japan they space out their vaccines.  A baby may receive one live vaccine every 27 days.  In America you can have between 7 yo 9 vaccines in one visit.  There are no studies that have ever been done to show that giving many vaccines at one time is safe.  There is no studies showing combination vaccinations are safe.  The studies have never been done!  But we combine shots and give them all at the same time.  Not ever country agrees with us and Japan is one that is strict about only giving one vaccine at a time.

There is no tracking and tagging system in Japan.  The government does not keep records on vaccination nor does the doctor.  Each time the baby is vaccinated it is recorded in the Mother Child Health Handbook which is kept by the mother.  The schools do not ask for proof of vaccination and never see these records.  The only time a doctor sees these records is when the parents want to vaccinate.  The doctor always checks to ensure there are enough days spaced between the vaccinations.

The Mother Health Hand book has a list of cautions when vaccinating.  It also asks that the parent do the following:

Tell your doctor if your child has an health issues or concerns.  This may be a reason not to vaccinate.

Tell your doctor if your child experienced any reaction to the vaccine. 

Tell your doctor if your child has experienced seizures.

Tell your doctor if anyone in your family has ever had a vaccine reaction.

The handbook also advises the following:

Take your child's temperature before coming in to vaccinate your child.  If is is elevated at all please do not come in as we will not vaccinate your child.

Afterward, please watch your child for 30 minutes for immediate reaction.  Monitor your child all day and avoid all activity on the day of vaccination. Of fever or seizure happens see your doctor immediately.

What is incredibly interesting about this is that in the United States doctors feel it is safe to give vaccinations if a child has been ill, has a cold and never ask about the health status of the family.  We basically do the opposite of what Japan does!

One other interesting fact, Japan does not give the MMR vaccine.  It only gives measles and rubella.  They do not give mumps.  We should really consider this as mumps are not dangerous when caught as a child but is dangerous as an adult.  If our children could get it as children that would avoid having to re-vaccinate through out life. If our children do not get is as children then we could vaccinate to protect adults.

If i get the slides I will cover more on the Japanese system.

Off to start the day!

International Public Conference on Vaccine Safety Update #1

Hi All!

I spent Thursday, Friday, Saturday and Sunday in Virgina at the International Public Conference on Vaccine Safety.  It was 14 hour days with information overload.  Barbara Loe Fisher stuffed the conference with brilliant scientists, doctors and professionals who put on fast paced presentations.  Most presentations were probably meant to be 2-3 hour presentations but only given 45 minutes to cover the same information.  It was close to impossible to write fast enough to get all the information.  I was amazed with the factual reports on the pro's and con's of vaccines, timing and number of vaccines, and what is happening in other countries.  My head is still spinning and am excited to share all of this information with you all.  My plan is to blog for the next couple of weeks until I just can not think of any other fact to share with you.  Please spend the next few weeks with me learning all about the issues of vaccine and vaccine safety.

You might wonder why you care?  I know that for several years I decided I did not need to know about vaccines.  I knew that I was not going to vaccinate Mark again so why did I need to torture myself with the subject.  I never even finished Barbara's book The Shot In The Dark.  The farthest I have gotten is page 81.  Every time I try to read about it I end up sobbing and spend hours feeling sorry for myself and our journey.  Don't get me wrong.  I know I am lucky.  I know that this is God's journey for me and normally I have faith and strength but this subject hurts my heart so deeply.  

So you may wonder why I would torture myself with a four day conference on vaccines.  I did it for you and for me.  This is a bigger issue than whether you or I vaccinate our children.  It is about fighting for choice. 

Vaccine Choice

Health Care Choice

Food Choice

Our society, news organizations and government are moving away from choice.  If some had their way we would not longer have the freedom to not vaccinate, to buy organic non GMO food, or alternative health care.  We need choice and we need to educate ourselves so that we can educate our friends, neighbors and family. We can no longer live our lives quietly.  We have to speak our truth.

I loved the slogan for the conference:

Show us the science and give us a choice!

It's nice to be home and I can't wait to share all that I have learned.

Cynthia

PS.  Mark's creative writing story is now on autism one. 

http://www.autismone.org/content/day-i-became-president-mark-macluskie