Supplement Winners and Losers for Savannah

Let’s face it, all supplements are not equal. Some are wildly helpful for ASD children as a whole, but most often, for individual children. As we talk about supplements being the backbone of the protocol that we used to recover Savannah from Pdd-Nos, we understand those are basic supplements. Sometimes even those basic supplement can cause huge improvements as they did here.

And then there are those supplements we all call WOW supplements. We give them and within a short period of time our child does something new that makes us go “WOW.”

Last but not least, there are supplements that either do nothing for our child or make them worse and make us vow never to try them again.

The following are all the various supplements we have used throughout the years with Savannah:

Note: B/C=Before Chelation D/C=During Chelation

Wow Supplements

B Complex Vitamins  B/C
Just 1/2 of a drug store B complex improved auditory processing.

Calcium/Magnesium  1000 mgs/500 mgs  B/C
Calcium/Magnesium given at these dosages calmed her hyperactivity and about 5 days after starting them I found her upstairs in my room calmly laying on my bed watching television.  This was a novel event for us.

Cod Liver Oil  B/C
Many improvements with this one supplement:  Better eye contact, she stopped reversing her pronouns, more interest in her surroundings, just better awareness, increased social.

TMG or Trimethylglycine  D/C
Biggest WOW supplement we ever used. Got 5 years increase in language in 5 days. It was if a light switch had been turned on and she became less robotic.

Virastop  D/C
With any effective viral treatment, we got increased maturity, independence and goal-directed behavior.. This behavior was also observed with Proboost’s Thymic Protein A.

Curcumin
A wonderful anti-inflammatory, this supplement turned Savannah’s undereye area almost completely black. We never revisited it.

Acetyl L-Carnitine
The first time we used this we got no response. The second time we tried, seven months later, we noticed better attention within a noisy setting.

This post was by request. Please note that all children, which includes autistic children, have individual biochemistries and will react in a vastly different way from one another.

As with all supplements, if you decide to use something, start slowly and  work up slowly while you observe behavior. Only start one supplement at a time so you can be certain that what you are observing is the result of the latest supplement.

May you all find your WOW supplement.

Really??!! Seriously??!! III

Time again, folks for those wonderful statements and questions that autism parents just can’t wait to hear!

“She’ll eat when she’s hungry. You should let her go hungry, she’ll learn to eat what’s in front of her.”

Really??!! Seriously??!! Both of these were said to me many times. Savannah was vaccine damaged and was a full-blown anorexic. Anorexia in this example means total loss of appetite vs Anorexia Nervosa which is a psychological condition of the fear of becoming fat. She could not experience the sensation of hunger, never, ever.  If I had not fed her it would only have made her happy.

This is not the same thing as a child who eats cookies and then doesn’t want to eat her dinner. She didn’t eat cookies or anything else. Every bit of food that went into her mouth between the ages of 3 and almost 6 was put there by us.

And it may surprise you to know that other autism parents also said the same comments to us about her anorexia. People are more aware of autistic children as picky eaters, not anorexic. I used to hear other autism mothers complain that their child only liked five foods and think that they were lucky because that was five more foods than Savannah liked. I quit feeling sorry for myself when I heard about kids who were so anorexic that they had to be tube fed. At least what we put in her mouth got swallowed. May we all be grateful for what we have.

“What are you going to do when he/she gets older/stronger?”

Really??!! Seriously??!!   You think we don’t stay awake at night worrying about this or what is going to happen to our children when we die?  We spend a lot of energy during the day trying to keep thoughts like this pushed out of our awareness. Don’t ask a parent of an autistic child this unless you are prepared to see a grown woman cry or you have some kind of miracle solution.

“It would be so much easier if only he could talk.” 

Really??!! Seriously??!!  This said to a mother by a teacher when Mom asked why the teacher wasn’t using the PECS board to communicate with the child.

ARE YOU KIDDING ME?  You couldn’t make this stuff up. I can only imagine that the parents of this child had many times wished their child could speak, and not just to make this teacher’s job easier.

Honestly I think these parents should  be given some kind of award for not going ballistic or getting physical with someone who could be so insensitive, much less a teacher who is supposed to be trained in dealing with special needs students.

And again, the questions that every parent with a child with autism needs to hear are:

What do you need?

How can I help?

What can I do?

Reader Picks: Top Five Summer Blog Posts

Sadly, summer is almost over. I certainly won’t miss the hot weather but I sure will miss my girl who returned to school this morning for her first day of Middle school and I am scratching my head wondering where that little tow-headed toddler is that used to run around here clutching her pink, cloth baby.

We had an action packed summer at Saving Savannah and continue to be grateful for the health and happiness that recovery has brought our family. While we are so thankful for what we have seen transpire here we are continually aware of all the children who are not yet well. To that end this summer  saw the launch of Recovering Kids on FB, a group for parents of child with neurological and immune challenges who are implementing biomedical treatment.

So I decided to celebrate/mourn the end of summer with the Top Five Reader Picks of Summer Blog Posts we managed to turn out during our busy summer. Thanks to all the readers who read them, we would be nothing without you.

Some of the picks surprised me, particularly the REALLY??!! SERIOUSLY??!!, probably because I believed people who told me all my life that my smart mouth wouldn’t get me anywhere :-) Seriously, ask me if I would want a child like myself, not on your life.

So without further ado, here are the Top Five Reader Picks of Summer Blog Posts, delivered in countdown fashion:

Really??!! Seriously??!!

To All the Neurodiverse Who Keep Emailing Me About My Blog

Autism–Made In America

Really??!! Seriously??!! 2

Autism–Made In America 2
Happy School Year. Hope everyone has a great year!!

Never Counted

I had waited a month to get an appointment with a pediatric neurologist at this Children’s Hospital.  She looked well rested and all of 25,  I felt 100, easy. The preschool director  had already told us Savannah was likely Pdd-NOS, but I thought I wanted a formal diagnosis.

I tried not to prejudge, I had worked with lots of “Doogie Howser” type kids  at the hospital and most were truly capable. To my surprise we were ushered in to one of those little tiny patient exam rooms and not something more suitable for children.

I told Doogie Howser we were there at the request of her preschool teacher, for a possible PDD-Nos diagnosis. I know how to read nonverbal behavior and I saw her move her mouth in a certain way that let me know she was not entirely comfortable with what I had just said, although I could not figure out why. I gave her the letter from the preschool teacher that listed all the behaviors she had observed from being in the classroom with Savannah.

A little background. At this time, Savannah was still varying quite a lot in her day to day skill sets. Let me explain what I mean. Some ASD kids are the same every day, always pretty much autistic in the same way today as they were last week. And then there are other kids who vary somewhat in their skill sets from day to day or week to week.  It’s especially cruel as each time they start to do better…you hope…only to have that hope dashed when they return to less functional behavior.

Savannah was not the same everyday.  She had good days and bad days. As time would go on from this point, the good days got less and the bad days got worse so she was teetering on the edge of total decomposition, but had not, at this time, reached that point. But the main point here is that Savannah was having a GREAT day the day we saw this ped neurologist. A GREAT day. It reminded me of the saying by W.C. Fields, who refused to work with animals or children because they “will make a liar out of you every time.”

“She doesn’t look autistic.”was the first thing the ped neuro said. Odd statement for a doctor to make,  I thought. She asked me a few general questions about Savannah.  Then she listened to her heart, checked her pulse, looked in her eyes, ears and throat and made the second odd comment. “I usually get a certain feeling when there is an autistic child in the room and I’m not getting that.”

And with that she said “I have no further questions”, then wrote a couple of prescriptions for some psychotropic drugs and started to walk out the door. We were done in 10 minutes?

I wanted to go back out and check the door of the office again…did I accidentally get the psychic’s office instead of the neurologist’s. I know this is not how diagnosing is done.  By feeling? This is what they teach you in medical school? Gosh I have feelings, maybe I should have decided to become a medical doctor.

 
“Are we done?” I asked incredulously. “I am her mother and spend 24 hours a day with her and I’m standing right here, how can you diagnose her without asking me a single question about her day to day behavior or taking into account what the teacher has observed.

Since there was no response for at least 30 seconds while we both stared at each other, her with this “well I’ll humor this mother” look on her face, I continued.

“She appears not to hear me a lot of the time, I started.  She has no balance nor can she dress or undress herself. She reverses her pronouns more often than not. She’s taught herself to read but cannot hold a back and forth conversation. She won’t eat, I mean she won’t eat until you feed her. She has a sing-song quality to her voice that I’m sure you heard. She can’t hold a fork or pen or put enough pressure on any writing instrument to make a mark on a piece of paper. She doesn’t seem to know how to play with other children.”

“What does all that mean?” I asked. Silence from Ms. Doogie Howser and more silence, so I continued.

“If she’s not autistic, what are these prescriptions for?  Are you even going to tell me what the side effects are so I can make some kind of informed choice about whether it is a good idea to give psychotropic drugs to a child who just turned three?”

I was on a roll and getting more upset with each question. I felt like I was in some kind of bizarre, alternate universe, the utter absurdity of the whole appointment was just overwhelming, coupled with the three hours sleep I had had in the last three days, so I ended, raising my voice. “FOR THE LOVE OF GOD, DOCTOR, I TRAVELED OVER AN HOUR AND A HALF TO GET HERE, FOR HELP, DO YOU NORMALLY GIVE TWO PRESCRIPTIONS FOR PSYCHOTROPIC DRUGS, TO PERFECTLY HEALTHY 3 YEAR OLDS?”

Oh, she was listening now and for a moment I thought she was going to turn into an real, live human being and actually tell me something. And then I could see the gears switching in her head and she replied “I’m sure this is frustrating for you, Mrs. C, but I can only go on observable behavior, that I see and I’m not seeing anything that I could diagnose as autistic. You’re free to bring her back if anything changes.”

Oh, yea, I’d be certain to come back for this kind of service. I had been a psychotherapist for many years and I knew what this pediatric neurologist was telling me about not diagnosing except for behaviors observed by her was not accurate, but I decided not to call her a liar to her face.  I briefly thought of asking to speak to the head of the Pediatric Neurology Department but then luckily decided I was just too tired to talk anymore.

I say luckily because in the very next Sunday’s newspaper they were interviewing the head of the Department of Pediatric Neurology of the very Children’s Hospital that I had taken Savannah  and asking him about the rise in autistic spectrum disorders. He reported that the rise was due to OVER diagnosis. So no child was not going to be diagnosed unless they met the full critieria for classic autism at this hospital.

And that’s how they kept down the number of autism diagnoses in my state. I know what this head of Neurology and Children’s Hospital did (refusing to give a diagnosis in light of behavior observed by the teacher and parent) was unethical, it may have also been illegal. For a good discussion of other games played with diagnosis of children’s developmental disorders please see this great article by Shirley Tzorfas,

Savannah did go on to be diagnosed with Pdd-NOS by a developmental psychologist only several weeks later but it makes me wonder how many other Pediatric Neurology Department Heads decided to take matters into their own hands and in an effort to dispel the myth that autism rates were not growing, just decided not to see any more autistic children.

How convenient for these doctors just to not “see” autism. It is a luxury that parents of autistic children just do not have.

Really??!! Seriously??!! 2

A few more silly questions or insensitive comments that people make to parents of autistic children, sent to me by readers.

Your child doesn’t talk? Sometimes I wish my kids would just shut up!

Really??!! Seriously??!!  Do you not understand that any mother of a nonverbal autistic child would die happy if they could hear their child say “Mommy” just once or one “I love you?” Honestly, think, people. Would you tell someone who lost their arm they are lucky because now if they lose one glove it’s no big deal?

I think this is, without a doubt, one of the, if not THE worst things you could say to the mother of a nonverbal autistic child. I almost didn’t include it because I can’t even think of what I would say. I normally view questions, even stupid questions, as an opportunity to teach. I don’t think that we do anything to further the knowledge of autism by getting snarky with people, no matter how much they deserve it, but I’m a loss here. Maybe one of my readers can help me out.

God must think you are a very special person to send you this special child

What you would want to say:

Really??!! Seriously??!!  Well, I’d just as rather be thought of as ordinary and have my child be healthy,  if you want to know the truth. Be  careful about bringing up God or religious issues until you know where I am because some of us go through a period of questioning our faith or lose it or lose it before finding it again.

Almost everyone goes through a period of anger at God for the pain and heartache our child will suffer because that is part of the grieving process. The loss of the child we thought we would have and the life that we imagined we would live weigh heavily on our minds off and on for many years.

And for the love of God, don’t give me that poem about Holland. I want to know what the heck did Holland do to anyone anyway? We seriously love our children but many of us would consider Holland or some days prison, a vacation compared to what we go through on a daily basis.

What you would say:

I have always felt my child was a blessing, just as the mother of any child does.

This question was asked by a workman making a service call to the home of a Mom with an autistic spectrum disorder child.

Does he have special gifts like Rain Main?

What you would want to say:

REALLY!!? SERIOUSLY!!? Assuming that every child with autism is the same as every other child with autism,  is exactly like thinking that every single  handyman has the bad manners to walk around with their pants low enough to expose half of their butt crack. You wouldn’t want me to think that, would you?

Author’s note:  I did try to find a less offensive term than “butt crack”.  I looked it up and the technical term for butt crack is “intergluteal cleft” which I find almost as funny as “butt crack” but I didn’t know if I or anyone else would know what this was.

What you would say:

Like all children, every single autistic child has unique strengths and challenges.  Only a very few autistic children are like Rain Man but I do appreciate your taking an interest and asking questions because now you know and can help other people understand that each autistic child is unique.

Again, the best questions, that moms of autistic children really need to hear?

What do you need?

How can I help?

What can I do?

Then when you come to, you can ask…Really??!! Seriously??!!

Autism-Made in America 2

The following is the author's description of t...I just wanted to protect her. I was very misguided and mislead about who and what I should have been protecting her from.

This is part of the vaccine history, that would have saved Savannah and countless other children who came behind her from vaccine damage,  if our government would have been doing their jobs and concerned themselves with the welfare of America’s children and not the pharmaceutical companies. For the first part of Autism-Made in America, start here.

People, even my family asked, how do you KNOW it was the vaccines that caused her autism? Like most people when a tragedy happens, I went looking for answers. I really had no idea where my quest would lead me. This is what I found.

In 1997, the US Congress required the FDA to review the thimerosol (mercury) content of drugs due to a rise in neurological disorders (tics, ADHD and autism) among children. The CDC fully admitted that they had “neglected” to add up the total thimerosol content of all the vaccines added to the vaccination schedule. Whoops!

The Simpsonwood meeting, which was held in June of 2000, was convened to perform this review. Representatives from the CDC, the FDA and the pharmaceutical industry held a two day meeting to focus on the adverse data reports from the Adverse Data Link. It was held in secret, all the experts were told they could not speak about the outcome of the meeting and no notes were allowed to be taken away from the meeting.

A  young CDC epidemiologist, Dr. Thomas Verstraten, was given the task of comparing neurodevelopmental outcomes of children exposed to Thimerosal using the CDC’s internal database, the Vaccine Safety Datalink (VSD)

By November of 1999, Dr. Verstraten was in a near panic as the data he was analyzing was showing a clear, unassailable, ugly truth: there was a statistically significant relationship between the amount of mercury children were receiving through their vaccines and autism. No matter how he tried to run the numbers, he wrote, the association “just won’t go away.”

Conclusions of the study presented by Dr. Thomas Verstraten at the Simpsonwood meeting, who examined the records of 110,000 children (very large sample size, which is a mark of a reliable study), confirmed a dose-response link between thimerosol and neurodevelopmental disorders  that held up to rigorous statistical analysis, meaning that the higher the dose of thimerosol, the more risk there was of neurodevelopmental disorders. This is what is known as a direct causal effect or A equals B or mercury causes neurodevelopmental disorders like autism.

Here it was, time for the experts whose job it is to protect our children,  to stand up for the children, for the parents and do their jobs and tell the truth. They did not. They deleted whole clinics and moved around other groups of children in the study until they could manipulate the data to report  that there was a slight  connection between thimerosol and neurological disorders in children. This is known as scientific fraud.

I went looking for alternative explanations for the Simpsonwood Meeting, to see if anyone would defend it. And I did find a few articles that said there was no conspiracy to cover up a connection between thimerosol and the rise in neurodevelopmental disorders. The scientists at the Simpsonwood meeting were merely trying to figure out what the data meant.

I quote from the Simpsonwood transcripts:

“the number of dose-related relationships [between mercury and developmental disorders] are linear and statistically significant. You can play with this all you want. They are linear. They are statistically significant.”  – Dr. William Weil, American Academy of Pediatrics. Simpsonwood, GA, June 7, 2000

Does this sound like someone who is confused by the data?  It does not to me.

Another comment from the Simpsonwood transcripts.

“My gut feeling?  It worries me enough. Forgive this personal comment but I got called out at 8 o’clock for an emergency call and my daughter-in-law delivered a son by C-section. Our first male in the line of the next generation and I do not want that grandson to get a Thimerosol vaccine until we know better what is going on. Dr. Johnson, page 98, Simpsonwood transcripts.

Does this sound like someone who is confused enough about the data that he isn’t making plans to protect his family?  Where was the consideration for the rest of us? Savannah had not even been born at this point, I would have liked to have access to this information.

Then they tried to play the “genetics” card. Several of the experts tried to imply that autism was a genetic disorder and therefore had nothing to do with vaccines. Dr. Weil puts this theory to rest when he says “We don’t see this kind of genetic change in 30 years.” Dr. Weil, pg 208, Simpsonwood Transcript.

And, finally, Dr. John Clements, vaccines advisor at the World Health Organization, declared that perhaps this study should not have been done at all.”

In other words, UH OH, what are we going to do now? Are you kidding me? Who are these people?  The “see no evil” part of the monkey trio?  Whom would it have been better for if this study would not have been done?  Where is one iota of concern about the children? Does this sound like someone who is just trying to figure out the data?  No, it does not to me.

While the Simpsonwood experts were busy trying to figure out how to hide the data from the American public so as not to jeopardize the vaccination program, behind the scenes the vaccine program was  busy trying to figure out how to get the mercury out of the vaccines. Another clue that the experts knew exactly what the data meant from the Verstraten study.

Savannah was one of the the last group of children to receive the full mercury vaccines. But, then didn’t they take Mercury out of vaccines, aren’t the new vaccines called “Mercury Free” vaccines?

Over and over we have heard how they took the Mercury out of the vaccines. It’s simply not true. Over 90% of the flu vaccines, recommended for pregnant women and every child over the age of 6 months, contains mercury. This was not the policy when Savannah was born. We know the devastation that comes from injecting babies and toddlers with mercury, can it be anything but worse for a fetus?

The tetanus vaccine contains mercury.  And even the so called “mercury free” vaccines are made with mercury and then it is supposedly “chelated” out, but mcgs of the neurotoxin remain.

A great deal has been said about mercury in vaccines.   What most people did not realize was that aluminum, also found in vaccines, was a known gene mutant and it appeared to be – potentially – just as dangerous as mercury!

When combined, the toxicities of aluminum and mercury, together, were “additive” – in other words the dangers associated with the “combo” of aluminum and mercury were much worse than what you would get from either metal alone.   Boyd Haley, metals expert, had testified to this fact during government reform hearings looking into matters of the autism-vaccine connection and metal toxicities.

This is not new information for the people in charge of the vaccination programs in our country. Transcripts from a separate meeting of the National Vaccine Program Workshop in May of 2000 yielded this response:

“for many toxic agents, metals in particular, is that of additivity… the response… is much more severe than I would predict from having either one of these agents acting by itself” [p. 120, Aluminum transcripts]…

And the reason that aluminum is in the vaccines?  Because it’s safe or better for children? NO.

“Aluminum is “not” perceived, I believe, by the public as a dangerous metal and, therefore, we are in a much more comfortable wicket in terms of defending its presence in vaccines” [Dr. John Clement representing World Health Organization at  Department of Health and Human Services, National Vaccine Program Office Workshop on Aluminum In Vaccines, Caribe Hilton International Hotel, San Juan, Puerto Rico, May 11th - 12th, 2000, p. 64, transcripts provided by Eberlin Reporting Service, 14208 Piccadilly Road, Silver Spring, MD,  20906, (301) 460-8369)].

And there you have it folks, the whole ugly, disgusting story of how many of our children were abducted by their vaccines, at the hands of the very officials who are charged with protecting their safety.

I just wanted to protect her…I have changed my mind about who and what I need to protect her from.

What can you do?

First, heal your child, I’ve seen lots of parents get  distracted by the political part of this debacle, make your child your priority.  Next, spread the word. And finally know that there are people who are working behind the scenes to try to get justice for us and our kids and the travesty that was bestowed on all of us.

An audio presentation about how people are working behind the scenes to obtain information and seek legal retribution with regard to the vaccine cover up , an Autism One Presentation, can be heard here.

 

 

Autism-Made in America

I always worried about some stranger taking her, my hand snugly on top of her hand when she was in a shopping cart so if  distracted, I would still know she was there.

I never imagined that she could be stolen right from underneath me by her vaccines.

And yet there came a day when she was gone as surely as if someone had abducted her and in her place was an unconnected child, a child who could not hear you, a child who you could fall down in front of, unnoticed. A child with a stare so intense it equaled the glee of her former expressive self. My child was abducted, just not in the way I had ever imagined.

And to this day, they deny the connection between vaccines and autism. Yet the connection remains crystal clear in the minds of many parents who experienced the abduction of their children.

A video that gives a little history of the Vaccine Court that I was not aware of i.e. when the Vaccine Court was started,  and some compelling parent testimonials about their child’s onset into autism and their resolve.

Were we supposed to be shocked that the Vaccine Court, which was set up not to find a link between vaccines and autism, did not find a link?

The Italian Court, like our Vaccine Court did go on to find  a connection between vaccines and autism in the Bailey Banks and Hannah Poling case, then they promptly sealed the records so that any information that could have helped future children would not be available.

Two great vaccine articles by Marcella Piper-Terry, M.S., founder of VaxTruth.org

“Vaccines Do Not Cause Autism”

“Mercury and Aluminum in Vaccines”

And here is a very recent (May 2012) study that reports the damage that Mercury does to a fetus’s serotonin and dopamine levels. This study strongly recommends Mercury be avoided in pregnant women while they continue to push the flu vaccine with full mercury content on expectant mothers.

Some members of my family have frequently suggested that I take my recovered child and get on with it but I cannot stand that they are creating new “Savannah’s” every single day. Or that mothers continue to wake up to the horrifying fact that their child has been abducted when we know full well what causes this and what could prevent it.

We know better, we should do better.