Autism and the Vaccine Controversy, Part 2

20 01 2011

Patrick’s Story Continued

Once Patrick was diagnosed in 1997, I learned everything I could about autism. Truth be told, there wasn’t much on the internet yet about it. When kind people were sending me information, the chances were high that I already read about it. There was an interesting site I found that described different versions of autism. Two of the things on the list were “diet-induced” autism and “Candida-induced” autism (or autism that was induced by a systemic yeast infection. Long before I knew about Dr. Wakefield, I was already reading peer-reviewed research on the role of diet and autism.

When we returned to our pediatrician after the vaccine, and exclaimed, “Where did our child go?”, she ordered an ABR (auditory brain stem response — to check for deafness caused by the vaccine) and some initial lab work which returned showing high liver enzymes and a high platelet count. His pediatrician told us this indicated that his liver was overburdened, processing out some toxicity. This was 2 months after his MMR/DPT/polio. “This happened within 24 hours of the vaccine.  There has to be a connection.”  There was a long pause and a deep breath: “It would correlate” was the response.  A more comprehensive battery of testing was ordered.  While we were waiting to get this back, the psychiatrist who diagnosed him officially with autism also ordered a Fragile X and a few more lab values.   The heavy metal toxin screen came back indicating that he had high levels of zinc, nickel, mercury, aluminum. He had low levels of magnesium, potassium, iron, manganese, silicon, and cesium. He had a high calcium/magnesium, zinc/iron, zinc/cadmium, levels and low calcium/copper, calcium/zinc, and iron/copper. I know that probably is Greek to most people. Low magnesium levels may be implicated in fatigue, muscle cramping, and depression (hyperirritability, hyperactivity, muscle twitching and nervousness as a response). Low potassium may indicate fatigue and stress, effects neuromuscular response, ion transport, and energy production. Low iron most people are familiar with being associated with iron-deficiency anemia whose symptoms are weakness, fatigue, paleness, palpitation, headache and shortness of breath. High zinc levels were associated with poor utilization and may be preliminary to zinc depletion. Pyridoxine needed to be added to help maintain proper zinc levels. Low manganese levels could be seen in connective tissues disorders (this was fascinating to me because of our family history of autoimmune disorders). Low vanadium levels may affect bone morphology and aortic cholesterol. Low silicon levels may be associated with decreased calcification of the bones and teeth and abnormalities of the articular cartilage and connective tissue. It is a biological cross-linking agent in collagen and connective tissue. High nickel levels show high tissue destruction, especially in epithelial tissue. Mercury and aluminum are neurotoxins. 

I learned about a group called ANDI (Autism Network for Dietary Intervention) from the Developmental Delay Registry website which was founded by Lisa Lewis and Karyn Seroussi, parents of children who had changed dramatically through careful implementation of home-based dietary programs. They helped other parents by showing them how to support their child’s immune system, combating yeast and bacterial overgrowths, eliminating certain foods. “Recovery from PDD” founded by Jean Lash had a child with autism who was then considered recovered by professionals. “The Association for the Promotion of Better Health” was founded to help parents interested in homeovitics which aimed to remove a child’s toxin burden.

The file I have on autism is about 2 feet deep just in the research papers I chose to print out. While other people were reading for pleasure, I was reading on how to heal my child.

I journeyed to the site of the highly regarded Dr. Bernard Rimland of the Autism Research Institute. His son had been diagnosed with autism when it was still considered very rare. He earned credibility in his field when Dr. Leo Kanner, a psychiatrist who first identified autism as a syndrome, wrote the foreword in Dr. Rimland’s book which put autism as a neurological disorder, not a psychiatric one. Dr. Rimland went on to co-found the Autism Society of America. His site had extensive information on the biomedical treatment approach to autism. We tried DMG (dimethylglycine) with Patrick but he seemed to have a reaction to it. With no biomedical experts in our area, I decided to place a call to them to see if they had heard of anything since it seemed relatively benign. The woman actually put me through to Dr. Rimland himself. Things were different back in 1997. He suggested that perhaps Patrick was reacting to an additive in the product and gave me a few places where we could purchase it in a pure form. We also put Patrick on a special vitamin product made specifically for children with autism called Supra Nu Thera from Kirkman Laboratories because it was researched that children with autism tended to have low levels of vitamin B and zinc. The list of things we tried for Patrick would blow your mind and I honestly don’t have enough space here to list all the different things and the different combinations.

I have meticulous notes that I have kept over the years. One of these includes a note for Patrick’s well visit in December of 1997 when he was 2 years old. He was being seen twice a week for occupational therapy for 45-minute sessions. Speech therapy saw him twice a week for 45 minutes. He was no longer in day care and home with me and making better progress. I was excited by the following: “Will tolerate us washing his hair now.” “Isn’t catatonic in his winter coat this year (which proves that I saw signs of his vaccine-injury long before his 15-month injection when he totally left us). “Gave me 3 half-hugs in the last 3 weeks.” He still wasn’t stacking things, talking, imitating, feeding himself, drinking from a cup, eating regular food, not pointing to things, not engaging in pretend play. Our concerns were about a rash on his face, biting his fingers. Things that made him dry heave and eventually throw up: A mylar balloon, Christmas tree, a different pacifier, or if he chokes on his own. He could only eat stage 2 baby food. The pediatrician, not knowing a lot about biomedical approaches, but certainly seeing the progress Patrick was making with whatever interventions we were trying, supported us in our efforts. If we needed a prescription for a certain item, all we needed was to send her some case studies to look over and she would let us know if she felt comfortable or not doing it. Sometimes she did; sometimes she didn’t. If she did not, we went on to try something else.

I read testimony from Washington, DC about parents whose children had reactions after the vaccine that were very similar to ours, but more than 20 years previous to my child’s injury.

I need to skip over how we decided on which home program to do because it is not relevant to the topic of vaccines except that the program we did choose had biomedical education as part of its curriculum. After Jeff attended the start-up program in early 1998, we received a letter dated May 1998 from other parents who attended who told us about how changing their child’s diet made huge improvements for them.

In November, 1998, our psychiatrist wrote us a letter for something that made us feel great. “I have examined him over the last year and worked with he and his family regarding guidelines and advance for Patrick. Over the course of our relationship, Patrick has made substantial gains given his parents high level of motivation and interest in his care. It is my opinion that given his parents’ motivation, interest and hard work, Patrick’s prognosis is excellent.”

In January of 1999, we attended our intensive program where we both learned the importance of diet in recovery from autism. Yes, you read that correctly: RECOVERY FROM AUTISM. We also had lunch with the now-recovered child who went on to graduate from Brown University. Can you believe that the medical community was so threatened that a mere parent could figure out a treatment approach that was considered quackery by modern medicine that this family received death threats? We asked him if he remembered any part of his life during autism and he told us of remembering swirls in yogurt.

It was then we worked on changing Patrick’s diet, switching him from his sugar-laden soy baby formula to rice milk. We turned his diet into a gluten-free, casein-free, sugar-free diet.  The child looked like he was on morphine (see picture below) before we started this diet.

Patrick in late 1998 right before we started the diet Jan 1999

  

Previous to the 15-month immunization, he looked like this:

  

Patrick with chicken pox March 1997 right before MMR

Patrick with chicken pox March 1997 right before MMR/DPT/polio

 

By the year 2000, Patrick’s lab values were back to normal. However, the damage was already done.   But by 2000, he was no longer getting sick so often.   No more reflux, no more colds, no more ear problems, no more sinus infections.  Several times we went a whole year without stepping foot in a pediatrician’s office for so much as a cold.  When going for a well-check, the nurse was shocked, “Oh, you haven’t been here in….a year?”  And he didn’t look like he was on morphine anymore. 

Our pediatrician gave us a permanent immunization waiver. In 2002, she wrote this: “Please continue Patrick’s medical exemption from further immunization boosters. For the foreseeable future, the possible consequences of further vaccination appear to outweigh the possible benefits and I have recommended to his mother that we not pursue further immunization at this time. I anticipate this exemption for the polio booster to be indefinite.”

In part 3 of this series, I’ll give you a look at what was being documented at the time in case studies.





Autism and the Vaccine Controversy, Part 1

9 01 2011

Autism and the Vaccine Controversy, Part 1: Understanding my son’s history.

While I respect your viewpoints about vaccines not causing autism, I would suspect most of you having such an opinion do not have children with autism. I ask that you also respect mine. I would also suspect that many of you have not done actual reading of the real peer-reviewed research on both sides of the issue, but rather are regurgitating what the media is reporting. The media are not the journalistic pioneers they used to be; rather, they read from press releases sent out to fill the 24-hour news cycle. Many of those press releases come from governmental agencies.

Contrary to media hysteria, most parents with autism are not in favor of a no-vaccine society. We are highly intelligent mothers and fathers who were forced into a situation where our children were ill or changed or both, and like any good parent would, set about to find what happened. One minute they seemed fine and then the next they were just gone. The media makes us out to be psycho parents who are out to harm society by choosing not to vaccinate any further.

In order for you to understand how I came to the conclusions I have, you must understand Patrick’s history.

When Patrick was born on Dec 17, 1995, we thought he was two weeks early. The midwife felt because he was peeling he might actually be more like two weeks late. Our midwife thought we were having a girl all along (we never wanted to know; there are very few surprises left in life). Up to the moment he popped out, she was saying, “Come on Katherine Elizabeth.” She said, “Oh my, Katherine has a BLEEP.” And I remember saying, “Oh, honey you have a little buddy!” before I passed out from sheer exhaustion, and well, I was hemorrhaging, too, so that probably had a little bit to do with the passing out. It was quickly controlled though.

I had an arduous labor with contractions starting 8 minutes apart at 8:00 a.m. on Saturday. I wasn’t dilating. Five-minute-apart contractions occurred for almost 23 hours. I chose to deliver at a free-standing birthing center; however, I asked to be transferred to the hospital because I felt something was very wrong during labor. Call it mother’s intuition. The midwife didn’t transfer me and convinced Jeff that I was delusional. Twenty-nine hours later, Patrick was born blue and limp, and had no reflexes (an Apgar of 3 at 1 minute, 9 being the top score). He received what is called blow-by oxygen and he pinked up, but he still had no suck reflex. With an Apgar of 3, a baby would be spending some time in the neonatal unit of a hospital. Despite the fact that he wasn’t able to breastfeed, I was sent home six hours later. It wasn’t until 9 years later that anybody ever said the words “cerebral palsy” to me (due to birth trauma and lack of oxygen). He left the center with an Apgar of 8 at 5 minutes (9 is the top score). The lactation consultant met us at our house at about 9 p.m. in the evening.

When I came back for my followup visit the next day, she told me how disappointed she was in me with my labor because she had had high hopes for me. I told her I felt completely abandoned by her. A few weeks later she was to blame my history of sexual abuse on my prolonged labor, not on the fact that she went off and went to sleep and left Jeff and I totally alone, two people who had no clue what we were doing. Later I found out from the chief of staff at a local hospital that no physician in the area wanted to be associated with her because she made poor decisions. I wish I had had this information prior, but we have to deal with the choices we make and move on.

The first week at home was horrible. He wouldn’t sleep. I wasn’t producing any milk. By the fourth night of no sleep I was getting close to being psychotic. My lactation consultant used a hospital pump to pump me and only 1/16 of an ounce was coming from one breast; 1/32 of an ounce from the other. While others were saying I wasn’t adjusting to motherhood very well, all this time my baby was starving. We got some soy formula into him and he became the normal baby. It was a great Christmas present (his jaundice also resolved with the intake of formula). Meanwhile, I was getting worked up for a pituitary tumor.

On January 3, 1996, he received his first injection, a hepatitis B injection. It was then he started screaming for 18 hours a day. This becomes a very important fact later on. The only thing that comforted him darkness, being held so tight Jeff and I had to wear wrist splints from our wrists being so hyperextended (he wasn’t sucking so we had to hold his pacifier for him) or moving in the carriage. I started walking 3 miles a day just to get a break from the constant crying. That pregnancy weight came off VERY fast.

On Feb 21, 1996, he received his DPT, Hemophilus influenzae shot #1, his second hepatitis B injection, and I opted for the IPV (inactive polio vaccine) because I was immune-compromised and I heard the oral polio could put me at risk to contract polio with my immune state. The crying was much worse.

On April 17, 1996, he received another DPT, another IPV, another Hemophilus influenzae B shot (also known as HIB).

Two months later, in June of 1996, he received another DPT, this time an OPV, his third HIB and his third hepatitis B. This child was still screaming. I walked an intensely fine line bordering on insanity. I was on production at work so when I wasn’t typing, I wasn’t making any money. My husband was trying to work late to make up for what I was not making trying to deal with this screaming child all day long. We had no family to help close by to give me a break. They kept saying colic; this was NOT colic. My friends who had children who did have colic observed him agreed with me.

In September he got his first MMR. These immunizations play an important role later on (the mercury preservative thimerosal was in all of them).

By October, he seemed to be better. His milestones were behind, but that didn’t surprise me at all with him doing nothing but crying. My pediatrician suggested the Early Childhood Intervention program that was a state-based program that could get him OT, PT and speech help. By about February, I was watching the OT bouncing him on a ball and I said, “With no disrespect, how is that helping him with his gross and fine motor delays.” She said, “Oh, he has a sensory integration disorder.”

I scoured the internet searching this phrase. Just about every time, I was led to a site about autism. He wasn’t eating solid food still (now we know it was because the cerebral palsy affected his mouth muscles greatly).

In March, he got chicken pox and had an eardrum rupture, meaning antibiotics, which means his immune system was a bit depressed. In April, he got his second MMR, DPT and polio, and he disappeared. It was THAT abrupt. The affect of his face changed. I noticed he wasn’t responding to us; it was that quick. We thought maybe he had a vaccine injury that caused him to be deaf. We would throw phone books behind him and he had no startle reflex.

When I was cooking for Easter and I told Jeff to keep an eye on him. I was at the sink with the water running and talking with a friend (Jeff was talking to her husband in the other room). Patrick stealthly came into the kitchen and put his hands up on the oven, the outside of which was very hot and he started to cry but his hands didn’t move. Anybody knows that if you touch something hot, your hand or finger automatically pulls away. It was the first evidence I had of him possibly being brain-injured. Fortunately, we grabbed him (my friend was a nurse) and we held his hands under the water, acting quickly enough to stop any permanent damage.

I kept reading, scouring the internet. There wasn’t as much out there on autism as there is today and I read it all. I thought he had symptoms of autism and that everything I was reading said it couldn’t be diagnosed until he was 2 or 3. I told Jeff that he was to mark this day when I said it because this child would be diagnosed with autism. Jeff told me I was reading too much.

Jeff’s best friend’s dad died in May of 1997 and he went to the funeral in Florida. His friend’s wife had twins 3 weeks before Patrick was born. When Jeff came home, on the ride home from the airport, he started crying and said after observing his friend’s twins, something was indeed very wrong with Patrick and we needed to get him evaluated.

We were referred to a great doctor. In May or June of 1997, Patrick received the diagnosis. It didn’t matter to me that he got this diagnosis; my main mission was “Okay, what do we do now.” All I wanted to know is what we needed to do to treat this.

At the time he was diagnosed, the incidence of autism was 1 in every 10,000 children; the statistic today is 1 in every 91 children. It is at epidemic proportions. People will say, “This doesn’t affect me, so I have no reason to learn about it or even care about it.” It does affect every single taxpayer in this nation now and in the future.

So this gives you background information about what the first 15-18 months of life were like with our son. In part 2, I’ll discuss how we began discovering the links between vaccines and autism.