Autism Recovery Mom-Fighting Autism on the Cheap

Lifetime Health Corner-Not a hit piece!

Mark and I were interviewed by Lifetime Health Corner in May at Autism One.  There was some debate on whether it was appropriate to do a story on recovery.  They did decide to finally air our story.  I was pleased by the coverage.Here is the link if you would like to watch it:

http://healthcorner.walgreens.com/?twp=1&w=t#video_top

What I loved the most is that it described autism as a medical disorder. They also discussed diet.  The story made the point that autism is a metabolic disorder with genetic predisposition and that not all treatment works for every child.  I thought it was a very fair piece,

Eight years ago the medical establishment would not even acknowledge regressive autism.  Now there is no denying it.

Eight years ago the diet was never even talked about and now it is common and most doctors even know about it.

Eight years ago there was only one gfcf recipe book and now there is too many to choose from!

Eight years ago there was no talk of metabolic or mitochondrial diseases or for that matter anything medical with our children.  There is still a lot of doctors who want to deny the medical disorders of autism but we are making progress.

Eight years ago there was no really belief that seizure disorder was a co occuring disorder and now we know that 30 percent of our kids have it.

We are making progress my friends!  It is a tribute to all of us parents fighting and pushing to get our story out there and counter the CDC and NIH false story of our journey.

Let's keep the fight going!  IT is about education of our neighbors, friends, and doctors.

Proud mother of Mark who says that I am super smart when it comes to Autism!

 

Co Morbid Educational Project

I would like to take the time to briefly share the history and goals of this project.  This project was started three years ago because families could not get pediatricians and medical specialists to run reasonable tests that would rule out co morbid conditions of autism.  Our goal is to educated physicians, therapist and parents that children can and do often have co morbid conditions such as seizure disorders, gastrointestinal disorders, immune deficiencies and mitochondrial disease.  We want physicians and therapists to see past the autism label and see the whole child.  Autism is a neurobiological disease and therefore we must make sure that there is no medical reason for a behavior before it is treated as a behavior.  So often a behavior is taking place because of a medical issue and a child unable to communicate the pain they are in!  Secondly, our belief is that if we have good physicians ruling in or out co occurring disorders parents will spend less money on DAN doctors.  We support the use of DAN doctors but believe that we must advocate the use of quality physicians to rule out or treat co occurring medical conditions.  This allows parents to use insurance, save money, and use their resources more appropriately.

We have had some great successes:

1.      Three years ago it was extremely difficult to get a 24 hour EEG.  Now it is standard practice to receive minimally a 24 hour EEG.  Physicians and Neurologists now commonly know that these children have a 30 percent chance of having a seizure disorder.

2.      It was very difficult to get a gastroenterologist to scope a child with autism.  Parents were commonly told that children with autism had diarrhea and constipation and that was just part of autism.  Now we have a wonderful doctor who will rules out impaction, scope to look for medical disorders including Eosiliphil conditions and is supportive of the “diet.”

3.      If families wanted to use IVIG they would have to pay out of pocket to a DAN doctor for treatment or travel to UC Irvine to try and get it covered.  Now more than 40 children with autism and immune deficiency or dysfunction are receiving IVIG and insurance is covering these costs.  We actually have an immunologist who is diagnosing and treating PANDAS which is something we thought would never happen. Both these treatments are saving family thousands of dollars monthly and children are getting medical treatment that they desperately needed.

4.      We wanted doctors to work together to co treat our children.  Currently, our favorite gastroenterologist and immunologist are working together to co treat children with eosinophil conditions.

5.      We brought out Dr. Cohen to do grand rounds at Phoenix children’s Hospital. This was highly successful.  Seven families have pursued a mitochondrial work up because of their knowledge about this disorder.  They also had the information to educate their primary care physician.  PCH is now on the lookout for mitochondrial disease and one family has actively been referred for additional tests.  Years ago it was impossible to even get metabolic tests run and now this is commonly happening.

This project cannot be a success without the help of parents.  Finding quality doctors and educating them is time consuming and we have painstakingly worked on this for three years.  There are some important rules that need to be followed that will help this project be a success:

1.      It is important that parents not bring in DAN labs to our mainstream doctors.  They do not use these labs and cannot read them.  Please only bring in lab tests run from traditional lab companies like Sonora Quest or Lab Core. 

2.      It is important to know the difference between DAN doctors and main stream physicians.  We cannot expect our mainstream doctors to behave like a DAN doctor.  What is wonderful is we can use them together.  For instance, you can have your child scoped and find out what is going on and then you have the choice to use a natural treatment or a mainstream treatment.  At least now you actually know what is happening inside your child. Mark was recently scoped and has esophagitis.  We decided to use a mainstream treatment for 3 months to see if it cures the problem.  If it does not work we will pursue a more natural approach as it may be an ongoing issue.  We now have a choice which is what we have always wanted for our families.

3.      It is important that we are good patients.  Please make an effort to come in educated about what your concerns are and why you want a certain test run.  What symptoms is your child having and why you are concerned.  Please do not go into a doctor saying “little Joey just had this test and I want it to.”  Autism Society offers a 30 minute class on how to be a good patient and get what you want from mainstream doctors.  If you are interested in this class please contact one of the parent mentors.

4.      You need to follow the doctor’s directions.  This is crucially important as we are still trying to educate our doctors.  For instance, if your child is not gaining weight the first thing the doctor is going to want to make sure is that your child is eating enough to gain weight.  To prove this to the doctor and have them look further it is important to keep a food diary and return to the doctor to prove that this is not the problem.  Once you demonstrate this the doctor will look further.  As parents we have a responsibility to our community to make the effort to educate our doctors in a kind and thorough way.

5.      Our doctors are not DAN doctors.  They are to be used for co occurring conditions.  It is important to be able to have a disorder diagnosed.  Once it is diagnosed it is up to you to decide how you want to treat it.  I have a thyroid condition.  I first tried a natural treatment but it did not work and now use a mainstream treatment.  For Mark, we are making the opposite decision.  But in both situations we knew what the issues were and could make the choice. 

 

Finally, I am amazed at how much I am able to get my mainstream physicians to do for us.  When I get calls from parents who see the same doctors and do not have the same results I am always surprised.  I have learned these last three years that it is usually because of the following reasons; lack of preparation for the appointment, the expectation that the doctor would be a DAN doctor, and/ or the parent does not want to spend the time to follow directions so that they can educate the doctor and have them take the next step.  Please remember this is a journey and we need everyone to help us move the project along.  Recently a Cleveland Clinic physician told us that the care our children are receiving in Phoenix is the best in the country.  We currently have parents in New York and Kansas asking us to help them start this project in their states.   We are proud of this project and want it to continue to move forward and we cannot do that without our families.  If you have questions or concerns about this project please contact one of the parent mentors.

Bal-A-Vis-X Part 2

I just finished day 2 of my first Bal-A-Vis-X class.  I paid more for this class then any conference or class, ever!  As you know, I am all about the cheap.  I did get a $115 discount and yet I still paid more for this than anything else I have ever done for “autism.”  Simply put, this was the best money I have ever spent.  This was not a take notes and listen kind of class.  Bill had us up and participating the whole time.  I could never have taught this to Mark or myself by reading the book or watching the DVD.  There is a lot to the techniques and Bill and his assistant instructors wandering the room correcting us and making us better understand Bal-A-Vis-X.  I had more fun and actually surprised myself.  When I first saw all that we were expected to do I thought for sure I would fail.  I did way better than I expected and had more fun! There were 6 “autism” moms in attendance.  I knew everyone and some of them I had not seen in years.  What fun to catch up and learn something new to help our children.  What is great about this is it will help all our kids not just the ones with “autism.”  I am excited to get my husband and I actively working on some of these exercises as I believe it will help us as well.  This is similar to Brain Gym and vision therapy but way more fun, active and intense.  I highly encourage you all the check it out.  Katie, Susan and I hope to bring Bill back in January to do a training!  Keep your eyes open and make sure you do not miss this opportunity.  It truly is one of the best things to add to your therapy repertoire!

What Does Our Home School Week Look Like?

Monday:

We have a special coffee cake breakfast where we meet and discuss my expectations for the week.  Mark has the opportunity to address issues that he is having or rules that he wants to amend.  We then read books that address the subjects of sex education, morals and values and social skills training.  Currently we are using these books:

    What's The Big Deal? Why God Cares About Sex

    Doing and Being Your Best

    Gentle Ben-Our current "whole" fiction book

    Superflex Training from Michelle Winner-We review the book and then complete a lesson.  We then     watch Leave It To Beaver to watch for characters that are behaving in ways that are part of that         day's lesson.

We spend the afternoon on history and projects related to history. Yesterday we studied the great fire of London and the great plague.  We also discussed Charles I and his beheading.  Our entire hallway wall is a time line.  We create pictures that represent the major issues and glue them to the time line.  I usually pick a historic fiction novel to go along with the subject and a documentary from Netflicks (if there is one).  I follow the Story of The World Curriculum which starts with the ancient history and slowly progresses to the most current.  We love this program.

Tuesday

We start school at 9:00 am and continue until 11:00.  We start with math.  Currently we love Math U See.  We love this math program because it is visual and uses manipulative's and is therefore very hands on.  We are flying through math with this program.  We then proceed to grammar-Easy Grammar and Daily Grams which truly are easy! We follow up with vocabulary.  We use two programs Wordly Wise and Vocabulary Cartoons.

Between the hours of 11 and 1 Mark is responsible to do his brain fitness box, Wii fit, and have lunch.

We start school at 1:00.  Mark starts with typing lesson, Building Thinking Skills 2 which is a logic program on the computer which is fantastic.  We work on his writing assignment and then will  continue with history by reading from a historical fiction if we have time.

3:30 Occupational Therapy and then free time which does require 50 pages of reading and piano practice before he can do anything else.

Wednesday

8:00 Piano Lesson

9:00 PE

11:00    Math, Grammar, Building Thinking Skills, Typing

2:00-5:00    Robotics

Thursday

9:00    Leave for Religious classes

1:00    Math, Grammar, Building Thinking Skills, Typing, Vocabulary,Writing

3:00    Reading, Brain Box, Wii Fit and Piano Practice

Friday

9:00    Math, Grammar

10:00-11:30    Creative Writing Class

12:00    Home School Park Day

3:00    Reading, Brain Fitness Box and Piano

Saturday and Sunday

Mark is required to read 50 pages every day even on the weekend. He is also required to find time to do his brain fitness box.  He must also do one page of math each day.  Once all of this and he has practiced piano he is allowed to do what he wants.

   

Which Person Are You?

I had a truly horrible experience yesterday.  I was on my way home from running errands when I came across a boy lying in the street. I pulled over to see if I could help.  The boy's leg was no longer attached to his leg. Even this morning I can not shake the horror of that. It is a sight you simply are not supposed to see.  I asked the few people there what they needed me to do.  I was asked to stopped traffic and turn cars around.  There were actually people trying to drive around the boy, the bike and all the stuff strewn across the road. I spent about 45 minutes directing traffic while the fire department arrived and worked on him and life flight landed and took off. The whole time I prayed for the boy, his family and all of us involved in this terrifying event. I was struck with the realization that there are three kinds of people in this world; the people who pull over and help, the people who try to drive around, and  the people who stand around to watch.  Which person are you?  I am the person who pulls over and jumps in to help. 

You may ask how this relates to autism?  It's about doing and participating.  Creating change and living passionately.  I know that there are many of us who volunteer our time to educate the community about autism.  But I also know that most people do not volunteer their time.  I often hear that they will when they get their child recovered. But will they?  I have never found that comment to be true.  Most families just move on with their life.  We need more soldiers in our fight.  There is much change that can be created with more hands helping.  The question for all of us every day is are you a doer? Are you passionate and will you live your passion? 

I want to change the world and make it a better place one person and one day at a time.  How about you?

The brain Fitness Box

Brain Fitness Box

We have been doing brain gym and vision therapy with our occupational therapist for several months.  I am happy with the responses I am seeing especially regarding the vision therapy. After reading The brain That Changes Itself I realized just how important these brain activities are to brain mapping.  I decided to make a “brain fitness box” that Mark could use somewhat independently.  I thought you all would be interested in what I have in the box so here is goes:

Vision Therapy Exercises

• Hidden pictures
• Word searches

• Worksheets copied from the Developing Ocular Motor and Visual Perceptual Skills: An Activity Workbook

• A string of beads to use for convergence exercises.

Brain Gym Exercises

• I have created cards with pictures of the Brain Gym Exercises to choose from such as figure 8, and cross crawl.

Occupational Therapy

• I made a few cards of OT activities we are currently working on such as crawling, theraputy and shaving cream.

Wii Fitness

• Mark must spend 15 minutes a day doing balance and yoga exercise.

There is a sheet in the box that reminds Mark to pick 4 vision therapy exercises, 1 Brain Gym exercise, 1 occupational therapy exercise, and 15 minutes of Wii Fitness.  The brain fitness box takes about 30 minutes a day.  Most of the exercises are set up so that Mark can do it on his own.   Obviously, you can’t just turn this box over to your child to use independently.  My suggestion is to use the box together for a period of time and then slowly fade out of the activities.  As the child gets comfortable you may want to let them do one activity on their own, slowly adding activities to complete independently, finally having to only remind them to do the activities.  This has really worked for us. Please keep in mind that you can rotate activities that are in the box and fill it with any activities that your child currently needs to work on.  The box just helps to keep it organized and efficient.

 

Maggiano's Restaurant

Today I attended a tasting at Maggiano’s.  I have never been there before and honestly did not know what to expect.  Chef Eric was creating a gluten and casein free menu for a holiday tea to benefit Autism Society.  First let me tell you that the entire staff was warm and attentive.  My drink never got half way down before a refill arrived to take its place. We could not have been more cared for and kindly treated.  That atmosphere and staff certainly make it worth the trip.  Now for the food!  The homemade gluten and casein free bread was tasty.  It was moist and flavorful without being crumbly or dry.  The chicken salad was delicious tasting really fresh and light.  The tomato and basil sandwich was also amazing and perfectly light and summery.  I immediately suggested to Chef Eric that he should sell his bread.  It was so yummy.  The kind of bread you could dip in olive oil and really enjoy without knowing you were eating gluten and casein free.  The fruit platter was filled with fresh, perfectly ripe and juicy fruit.  The dessert platter was amazing.  We had a cream parfait with fresh mango and strawberries with tiny little cubes of pieces of cake.  It was heavenly.  The spice cake was moist and rich.  The gingerbread cupcake was the most amazing gluten free cupcake I have ever had.  It was gingery and sweet and fluffy and light.  Really delicious! The tea is going to be really fun!  Yummy gluten and casein free food, good atmosphere and great service.  Keep Sunday November 8^th open!  It will be a great time and raise funds for Autism Society supporting the Parent Mentor Program.  

PS.  Maggiano’s has gluten free pasta-both corn and rice.  They also have gluten and casein free marinara sauce.  Remember to ask for the gluten free and casein free bread which is always available. 

Our wonderful doctor visit-NOT!

My fantasy:  The doctor walks in and we instantly have this rapport.  He has already spent time reviewing all the records we had painstakingly had faxed to his office.  He asked insightful questions and reviews the records we hand carried to his office.  He takes the time to see the videos that demonstrate Mark’s autism and his recovery.  After spending quality time going over our mtDNA, he calmly explains what is truly wrong and how we can quickly and inexpensively fix it.  Of course, it is simple and fixable.  (Hey, it’s a fantasy!  I might as well make it perfect)

Reality:

We arrived at CHOC hospital, which is huge and under construction.  Instead of the nice friendly person at the desk there are police with guns which tells you the kind of element that is present.  The place is so big they handed us a beeper. The doctor beeps you when he is ready to see you.  You head back to a clinic that is behind locked doors. 

The doctor came in and spent about 3 minutes assessing us.  He chatted with Mark and asked him to do some simple math problems. He does a simple exam and tells me that Mark looks and is very health.  He then proceeds to tell me that Mark never had autism and does not have autism and is totally fine.  He then told me that because I only have one child I was confused when I thought Mark had autism. Never mind that I brought a three inch binder of speech, OT, and developmental pediatrician evaluations that stated he had autism.  Never mind the 35 hours of ABA therapy for 4 years or the 2 hours of speech and OT for 3 years.  Never mind that I told him that the head of UC Irvine Neurology told us that Mark had autism but that we would have to institutionalize him.  According to this “specialist”, Mark is perfectly fine and always was.  Silly me!!

He then told me that Mark “looked health” and so therefore was probably fine.  If it was really a metabolic or mito disorder he would continue to go downhill and never improve.  This is obviously not the case with Mark so Mark is perfectly fine.  Never mind the 21 mitochondrial mutations. Never mind the metabolic testing that has come back several times demonstrating issues.  Never mind the medical issues. He dismissed Mark’s chest pain with exercise as being reflux or hunger pain.  Never mind that he becomes cold and clammy and must lie down.

Mark and I went to CHOC Hospital to see a geneticist from UC Irvine.  We were hoping for a complete mitochondrial disease work up for the two of us.  Dr. Jarrar told me that she was highly suspicious of mitochondrial disease and we needed to be evaluated together.  This is what I thought this trip would be but instead the doctor was not interested in me.  He was not interested in all the records or testing and he certainly did not want to see the videos.

Turns out there is a big autism study and we are no longer candidates.  I am pretty sure that within 3 minutes the doctor assessed that we would not make the cut and cut us loose (at least in his mind).  He agreed to see us in a year and run a metabolic panel.  Too bad we did not draw the blood fasting now the results will be useless.

I feel like I have post traumatic stress syndrome.  I am flashing back to right before Mark was diagnosed.  First, I was told he was fine and it was really only because I only had one child.  Then told that boys talk late and finally Whoopsy, he has autism!  When he had medical issues associated with autism I was told he did not have medical issues and even if he did he had autism and so there was nothing to be done. 

I almost ran out of the office screaming for a DAN doctor.  At least they don’t treat you like your crazy, ignore the issues or deny what is happening.  It sucks to have a child with issues that are so controversial and so “emerging science” that we have to search through a haystack for the one good “mainstream” doctor who can help us.  I just want to scream IT SUCKS over and over again. 

Okay I know that is not rational.  Just like when Mark was diagnosed with autism I let myself have a temper tantrum for a few hours and now I am moving on.  I will be calling Dr. Cohen’s office tomorrow and making an appointment at the Cleveland Clinic and one with our pediatrician to fill her in on our lack of quality medical care.  We will be re-running the metabolic panel –fasting this time.  We are moving on but gosh I just wonder why can nothing on this autism journey be easy and happen without a fight.  I am tired. I am going to have a drink and a little dinner and go to bed.

Tomorrow is another day!

PS.  Mark wants you to know the doctor is an idiot!

mtDNA Test from Transgenomic

The mtDNA Test from Transgenomic is a much better test than Baylor.  It looks at 5000 possible issues and Baylor lab only looks at 1000. I have two studies that demonstrate that it is better.  Also, Dr. Cohen from the Cleveland Clinic stated at the PCH Mitochondrial Parent's Night that he preferred Transgenomic.  Unfortunately, Sonora Quest does not have a contract with Transgenomic.  Phoenix Children's Hospital is using Baylor because they contract with Sonora Quest.  I refused to run a test I thought would be less helpful so this is what I did....

I called Transgenomic and begged them for the test to be sent to me.  I gave them all of my insurance information so that I could get pre-authorization. The test is over $7000.

I then took the test and 3 studies that proved the test was the better test to my primary care physician. I also had a list of issues that explained why I believed that mitochondrial disease is a problem for Mark.  She was wonderful and signed off on the test.

I then went to Sonora Quest to have the test run.  I had to pay for the blood draw and then I had to take the blood test and FedEX it to the lab.

We know have the results to take to UC Irvine.  My hope is this makes our visit more productive.

Off to California!

Mark and I are off to UC Irvine and CHOC hospital for a complete mitochondrial work up.  I am excited and yet really afraid.  I am not sure if I am more afraid they will say there is something wrong or if they will say they do not know.  I am so tired of not knowing.  I have struggled with my health for 42 years and Mark seems to be following my foot steps.  I have always held on to the hope that if there is a label then it can be solved and yet with no label we are floating through life without any foundations.  Is this true?  I wonder.  There are labels like autism that are not easily solved. Did the label help us recover Mark?  Not in the real sense that medical science and physicians helped us solve the puzzle.  However, the label have me a place to start on our biomedical journey.  Would I have found the diet and B-12 and homeopathy without the label? Maybe, but I doubt it.

When I talked to Dr. Melmed about mitochondrial disease and our concerns about Mark.  He said, "mitochondrial disease is like walking through a swamp.  You can't seem to find your bearings or find concrete answers."  Wow, that was the opposite of what I was hoping for.  My dad said today that the label and all the tests that  show there are things wrong do not matter  unless they have a solution to the problem.  That this knowledge is clutter. Hard to know.  Emotionally I believe that if there is an answer I will be empowered to find solutions even if the medical establishment has none.  We did it before and I believe we can do it again.

Wouldn't it be nice to have something that was not complex, controversial and "emerging science." First autism and now maybe mitochondrial disease. My only real peace in all of this is that we have won each battle presented to us.  I have to have faith we will overcome what ever answers we receive this week. We will be keeping you posted from California.