Jenny McCarthy Damn Near Killed Me

In November I began listening to my wife about her concerns for Ben. She had been extremely depressed that no one is listening to her. Me in particular. I had one time told her the story of a dog that I raised and how he backslid, that it was nothing but rebellion, ego, establishing his spot in the household. Nothing a little time wouldn’t cure. Words she was hearing from the doctors.

Erica had earlier even asked to check Ben’s blood for some sort of leukemia, she knew something wasn’t right. I didn’t.

But I did listen to her on the porch that night as she sobbed that Ben was unable to do the things he once was doing. To her it seems deadly. She said, ” Ben is a shell, an empty shell, nothing inside, it’s like someone stole our son.”

So much had been going on with me and my personal issues I was unable to pay attention much less listen to her before.  I was in denial of what was going on with Ben. I needed to be, he was my hope.

But this was November 23rd. My mother had just asked me if Ben had hearing problems, we had spent Thanksgiving with the family and she noticed he stopped paying attention to his name being called. We also noticed how different he was in comparison to his cousin who was one month older and when asked where hippopotamus live he said, “In the jungle.” Ben was doing little more than grunting. It was hard not to notice a difference. Especially for Erica who never wanted to go back down there after that. I thought she was jealous. She was heart broken.

So there we were sitting on the porch, talking. Erica felt better, I felt worse. In fact I was nervous.

I went back inside and Googled hearing problems because I felt that was what was happening, I thought that when Ben had his 106/107 fever back in January that his hearing could have been damaged. But up popped autism, over and over. I was a psychology major  and what I knew about autism had to do with children who had to wear helmets because they would beat their heads on the floor. How could my son have autism?

But I kept at it.

On November 25th I sent out an email to a list of folks who were authorities in the field of autism.  The email stated as follows:

My son is 18 months old, family says to have his hearing tested. They say it over and over. We have been replying that he hears fine, when he wants to. We never thought twice about it because he USED TO always turn to us when he heard his name. USED TO….

There are a lot of things Ben, our son, used to do. He used to mimic us, he paid attention, he pointed and ate and stayed still. Now those things are rare. I just sat on the floor with him and repeatedly asked him “where’s daddy’s shoes?” This is something he could have pointed to or gone and picked up easily a year or so ago. Instead he acted as if he couldn’t hear me or worse acted as if I wasn’t even in the room.

At 3 months my wife Erica had Ben picking colors and shapes.
http://www.youtube.com/watch?v=BNwHPZOmlNc

By 10 months he had perfected it.
http://www.youtube.com/watch?v=zwLwkKSuaLg

You know how when someone shows you the big dipper in the sky and for the first time since staring up into the night’s randomly scattered twinkling lights you see it … you really see it?

I began reading about autism today and I’m scared. Scared my son may have traits that could be diagnosed as autism and scared because I don’t know what to do.

I live in North Carolina. Ben had a high fever Friday and we asked the doctor about his ears and hearing. She gave us “The CHAT (Checklist for Autism in Toddlers)”. We came home and looked at it and thought it couldn’t possibly be autism, even though a couple of questions sort of hung up in the back of our throats when we asked each other about them. Could this be anything, something to consider? Is our son autistic just because he doesn’t hear us sometimes, twirls around in circles, refuses to eat anything foreign or new, has regressed in language skills and learned behavior such as picking colors and shapes, searching and finding asked for items and delivering them?

We could use some direction in how to find a little help. I would like to find someone who will tell me my son is an incredibly bright child with a lot on his mind, with perfectly normal developmental skills and that I am a typical first time father suffering from internet hypochondria. But I’ll settle for someone to just show me which end is up. Right now I’m lost.


A couple of days later I went to Barnes and Nobles and bought nearly every book I could find on autism. One of those books was Jenny McCarthy’s book “Louder than Words.” I remembered she was a new mom and had written a book earlier about the joys of parenting. But this book had a subtitle, “A Mother’s Journey in Healing Autism” I wondered what that was about.

November 28th I stayed up half the night reading half the book. The half that had to do with diagnosis. It wrecked me. Tippie-toes, hinges, ceiling fans, spinning wheels, loss of language, seizures, eating habits, no eye contact. I knew she was talking about Ben. But I still held on. Not Ben.

I woke up early, I left the bedroom and checked on Ben. A lump swelled up in my throat. My eyes watered. I sniffed and checked the clock, I had to be on set in an hour. I had a half an hour drive. I needed a shower.

In the shower something snapped. I never experienced anything like it. I sobbed as if I just discovered Ben had been eaten by a devil. How could this be? Oh my God why?

I knew it was autism. I was crushed. After the shower I thought I got my composure back but I was wrong. Half way through the bedroom Erica woke to wish me well at work. Again I broke. I couldn’t tell her. All I could say was that I was upset about Ben, that the book upset me. She made me go in to kiss Ben before I left.

I cried the entire half hour and when I got to set it was hard not to leave. I knew any moment I might fall apart and make a blubbering fool of myself.

Erica surprised me with Ben at lunch, they had dropped in and it was truly a gift. I was able to finish out the day, turn in my invoice and head home ready to tackle the days that lay ahead. Of course having no idea what those days and night would be like.

Hell it was already more than I could take.

Jenny McCarthy damn near killed me.

November 25, 2007

November 29, 2007 on set with Ben

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Diagnosis: Borderline Autism

bendiagnosisartOn November 25, 2007, I sent out an SOS email to just about anybody that was located within 60 miles and was a professional organization with a title that began or ended with the word autism. I got several responses. Now remember I didn’t know squat about anything when it comes to autism, but I was extremely scared and anxious to get help right away. My son had been slipping away  and I was just becoming aware of it.

I got several prompt replies, all of them extremely helpful. I sensed others had been down this road prior to my situation and these professionals were used to us desperate parents.

One of the first things that happened was we were put into contact with the local Children’s Developmental Services Agency, a division of Public Health within the North Carolina Department of Health and Human Services. On December 6th Ben was seen by a specialist. Ben was 19 months and 19 days old. He was evaluated and scored at 21 months for Gross Motor Skills, 18 months for Fine Motor, 18 months for Cognitive, 8 months for Language, 21 months for Self Help/Adaptiveand 12 months at Socio-Emotional (ELAP) The diagnosis was “Specified Delays in Development” 315.8

On January 24, 2008 Ben had another evaluation scheduled by the Early Intervention Service Coordinator.  This woman has become our life line. We trust her, we welcome any and all suggestions and have found her to be extremely straight forward and to the point. When she suggested Ben meet with a pediatrician and a psychologist we agreed and on January 24th Ben met with them and was put on the edge of the spectrum.

I bet I double guessed these two experienced professionals all the way home that day. How could he be on the spectrum? I mean come on, sure Ben didn’t jump up in the doctors laps and say “Hi!” but he acted kinda normal, and was well-behaved… sort of.

The doctors, of course, saw it differently.

“Ben is moderately willing to participate with the evaluator”

“Ben engaged in very limited periods of reciprocal interaction”

“Few intelligible words were vocalized”

“activity level was above normal”

“stuck thumb in his mouth and had a fixed gaze”

“lack of visual and listening response”

“Ben threw objects during the evaluation”

“frequently would not respond to staff requests for change in behavior or attention”

“behavior was predominately self directed”

“demonstrated little interactive play with this evaluator”

“exhibited some stereotypical autistic spectrum behaviors in this setting”

So I fought it for a day or two, maybe a week or two, until I could swallow the bitter pill. Ben was on the border, his CARS (Childhood Autism Rating Scale) score was a 30. Scores range from 15-60. Ben’s 30 is right on the threshold, squarely on the line between non-autism and the lowest bound of the mild/moderately autistic range.

Now some might say, “hey that’s good news, it could be worse” and of course it could be worse but that’s like saying it’s a great bucket except for the leak. But I understand, what I don’t understand is how any of this will work out in the long run.  If Ben was a movie it would be missing a scene.  You might be able to follow the story, even enjoy the movie but you’ll never know how that missing scene would have affected the intended experience. Sure, God ‘s plan, fate and all that, the intended experience is the life with the missing scene, get over it, there is no perfection and everyone has a flaw, this is Ben’s. We skip a scene, a chapter, a verse, in his developmental process and we will never know what’s permanent and what’s temporary, a head full of what if’s will plague us/me forever. What if Ben hadn’t suffered this injury, this problem, this set back, what if Ben wasn’t autistic, what if he was “normal?”

Of course no one will ever know, except perhaps Ben, all of us sense some unrecognized potential hidden within us, at least I do, I could have been … if it wasn’t for… if I would have just had the….blah, blah, blah, I dunno maybe it’s just me. But this does bring up a question, if, and I say if with fingers crossed, if Ben recovers and by the time he enters first grade and is at age level in all areas, do we tell him about all this stuff later on? Do we tell him he used to be developmentally delayed and was at one time diagnosed with autism?

Do we plant the seed in his normal brain that he used to be “retarded?”

Do we?

ProQuad

proquad-knockdownSo Ben is injected with ProQuad on April 18, 2007 and immediately after he begins to change. Now I don’t mean to suggest that it was as dramatic as lights on, lights off, but over the next few months he flickered off and on,  and then dimmed.

ProQuad is manufactured  by Merck in West Point, PA at a plant that was found by the FDA to have failed to thoroughly investigate when vaccine batches did not meet specifications, even if those batches had been distributed. Some drug components were tainted, and the plant lacked proper procedures and safeguards to ensure purity. FDA conducted the inspections between November 26, 2007, and January 17, 2008.

ProQuad was taken off the market in April 2007, a week or so after Ben’s shots. Merck claims that the shortage of the vaccine — a combination of the company’s measles, mumps, rubella (MMR II) vaccine and its varicella-zoster (chickenpox shot ) licensed by the Food and Drug Administration (FDA) on September 6, 2005– is designed for children from 12 months to 12 years of age.

In terms of potential side effects, Dr. Henry Shinefield, a clinical professor of pediatrics and dermatology at the University of California, San Francisco School of Medicine and a consultant to Merck, doesn’t see any more danger than there is with the current two vaccines. “It is important that children and parents be made aware of every side effect,” he said. “The side effects with this vaccine are inline with what we see with other vaccines.”

At the time of FDA approval, there was evidence of a slightly increased risk of fever-related seizures among children who got the vaccine, but the vaccine was approved with a commitment from Merck to do a large post-marketing study to further understand this risk. Now, these studies are showing that children who get this vaccine are twice as likely to have seizures caused by high fevers.

The federal Advisory Committee on Immunization Practices (ACIP) made new recommendations on key vaccines at its February 2008 meeting in Atlanta, ACIP voted to withdraw the preferential recommendation for the measles, mumps, rubella, and varicella vaccine (MMRV, marketed by Merck & Co., Inc. as ProQuad) as the vaccine of choice for initial vaccination of infants. Researchers in the study looked at 43,000 children between the ages of 12 and 23 months who had been vaccinated with ProQuad and 315,000 who had received two separate MMR and chicken pox vaccines. They found that within seven to 10 days after vaccination, those given ProQuad suffered twice as many cases of fever followed by seizures as those given the separate shots. This amounted to one extra seizure per 2,000 children receiving ProQuad.

In absolute terms, nine of every 10,000 children receiving ProQuad suffered fever-related seizures, compared with four in 10,000 children in the dual vaccine group.

On February 27, 2008 the FDA accepted the new language to be used in ProQuad’s adverse reaction labeling. The Adverse Reactions section of the label has been revised to include two adverse events, encephalitis (Encephalitis is an acute inflammation of the brain. It can be caused by a bacterial infection such as bacterial meningitis spreading directly to the brain, or may be a complication of a current infectious disease such as measles. Certain parasitic or protozoal infestations can also cause encephalitis in people with compromised immune systems. Lyme disease may also cause encephalitis. Brain damage occurs as the inflamed brain pushes against the skull, and can lead to death) and epididymitis, (Epididymitis is a medical condition in which there is inflammation of the epididymis -a curved structure at the back of the testicle in which sperm matures and is stored) to reflect updated data from post-marketing surveillance reports. Information regarding the potential risk of febrile seizures following ProQuad® administration has also been added to this section.

ProQuad has about 10 times as much chickenpox virus as the standalone chickenpox shot. Roseola, which like chickenpox is a herpesvirus. Ben had Roseola prior to receiving ProQuad.

ProQuad cost about $124, sales of the vaccine amounted to over 2 billion dollars in revenue for Merck, during the 2 years it was on the market.  That’s more than 200 million does sold. The National Vaccine Injury Compensation Program (VICP) was established in 1988 to compensate individuals and families of individuals injured by covered childhood vaccines.  The compensation money  has been funded by an excise tax of 75 cents on every purchased dose of covered vaccine. 200 million doses @ .75 each is $150,000,000.

In 1990, Merck & Co., manufacturer of the mumps-measles-rubella vaccine known as the MMR, made a significant but little-noticed change: It quadrupled the amount of mumps virus in the combination shot, from 5,000 to 20,000 units. Then in 2007 it reversed course, reducing the amount to 12,500 units. Neither the measles nor the rubella (German measles) component of the MMR was changed at all — each remained at 1,000 units throughout.

Merck also makes the single-component mumps shot, and in 1990 it also increased the potency of that shot by the same amount, from 5,000 to 20,000 units. But unlike the MMR shot, the standalone mumps shot’s potency was not scaled back in 2007. It remains at 20,000 units.

In 1990, Merck & Co., manufacturer of the mumps-measles-rubella vaccine known as the MMR, made a significant but little-noticed change: It quadrupled the amount of mumps virus in the combination shot, from 5,000 to 20,000 units. Then in 2007 it reversed course, reducing the amount to 12,500 units. Neither the measles nor the rubella (German measles) component of the MMR was changed at all — each remained at 1,000 units throughout.

Merck also makes the single-component mumps shot, and in 1990 it also increased the potency of that shot by the same amount, from 5,000 to 20,000 units. But unlike the MMR shot, the standalone mumps shot’s potency was not scaled back in 2007. It remains at 20,000 units.

The huge rise in autism cases began about the time the mumps component in the MMR was raised in 1990. One theory, dismissed by Merck and federal public health officials, is that viral interference between the components in the MMR could create a persistent sub-clinical measles infection in a subset of vulnerable children; and because the measles virus can cause brain damage, that could lead to autism.

A study released last week by the M.I.N.D. Institute at UC Davis reported that most of the fivefold increase in full-syndrome autism — from 9 in 10,000 children in 1990 to 44 in 10,000 children in 2000– is real and cannot be accounted for by broader categories or diagnostic substitution. And from 1990 to 2007, the mumps portion of the MMR was higher by roughly the same amount — quadruple.

Merck’s decision to cut back on the increase in the mumps vaccine also is surrounded by interesting timing.  The cutback, in 2007, came at the same time Merck announced it was suspending its recently introduced, much-hyped four-in-one shot, ProQuad — the MMR with the chickenpox vaccine added to it. In suspending ProQuad, Merck cited a shortage of chickenpox vaccine; subsequently, a study showed ProQuad caused twice as many fever-induced seizures as separate MMR and chickenpox shots given at the same time, and a CDC advisory committee withdrew its preferential recommendation of the vaccine. Merck won’t say when ProQuad will return to the market.

Could ProQuad’s higher rate of measles rash and fever-induced seizures be a warning sign that something is amiss with the MMR itself, especially beginning in 1990 when Merck tinkered with the proportions of the components?

A related finding comes from a study funded by Merck.  In 2005, the study reported that the four-in-one ProQuad shot — the MMR and chickenpox — was “generally well tolerated” and had a safety profile similar to the MMR and the chickenpox shot (also made by Merck and called Varivax) when given separately.

But there were a couple of interesting differences. First, “Measles-like rash and fever during days 5-12 were more common after the first dose of MMRV [ProQuad]” than after the MMR and Varivax given separately. The difference was substantial — 5.9 percent who got the MMRV had the rash and 27.7 percent had fever, compared to 1.9 percent with rash and 18.7 fever after getting separate shots. While that did not alarm the researchers, it could be a foreshadowing of the doubled rate of fever-induced seizures that was spotted after ProQuad was approved.

Second, even though the new element in ProQuad was the chickenpox portion, something new and unexpected was also going on with the mumps and measles components. “Geometric mean titers to measles and mumps were significantly higher after 1 dose of MMRV than after administration” of MMR and Varivax separately, according to the study’s summary. Later, the authors state: “This suggests that the measles and mumps virus replication is greater after MMRV than it is” after the MMR and Varivax given separately.

In non-scientific language, it looks like the addition of another live virus — chickenpox — potentiated the measles and mumps components: It kicked both viruses into higher gear and they replicated at rates higher than in the MMR.

At the same time, the researchers observed a greater incidence of measles-like rash, and fever, in those who got ProQuad. Were the increased measles and mumps viruses interacting in some unexpected and potentially dangerous way?

Then, for whatever reason, sometime between February and December of last year Merck reduced the mumps component of the MMR from 20,000 units to 12,500 while leaving the standalone mumps shot as it was. During that same period, it decided to suspend production of ProQuad. In April 2007, it announced the suspension, and said no more would be available after July. Then in early 2008, Merck’s study showing the doubled risk of seizures in ProQuad was unveiled and the CDC withdrew its recommendation.

And just last year, Merck said it would stop making the individual MMR component shots including, of course, the mumps shot. That leaves the MMR as the only vaccine in town, and it means there will no longer be a mumps vaccine formulation on the market with the dose the MMR contained from 1990 to 2007.

Merck acknowledges the three viruses can indeed interact to affect a child’s immune system, although in ways it says are not harmful.

A Merck scientist publicly discussed the interference issue at a CDC meeting in 2004, the year before ProQuad was approved, according to agency minutes. Dr. Florian Schodel “confirmed the possibility that the chickenpox virus component of ProQuad was causing a local immune suppression and an increase in measles virus replication. … The current hypothesis is that the varicella and measles virus are co-infecting the same or proximate areas of the body and engaging in a specific interaction, but how that works is as yet unknown.

“He said the interference appeared to involve only the chickenpox and measles viruses – ‘there is no such effect for the mumps or rubella vaccines administered locally at the same time.’”

Yet based on Merck’s own 2005 study cited above, ProQuad triggers an increase in mumps virus replication, too. Live viruses in ProQuad seem to be behaving in ways “as yet unknown” that cause immune suppression, co-infection, interaction and increased replication. Even without ProQuad on the market, interaction between the MMR components and the chickenpox virus remains a possibility. The CDC started recommending the chickenpox shot in the mid-1990s at the same 12-month well-baby visit as the MMR.

That suggests the pattern highlighted by ProQuad could be at work through the increased mumps component of the MMR and the addition of chickenpox to the childhood immunization schedule in the mid-1990s. The lesson could be that combining live viruses, and then increasing them or adding new ones, is inherently dangerous, especially when invasion of the brain by one of them “is not an uncommon event.”

Two additional points worth noting: After the increase in 1990 and decrease in 2007, there is still more than twice as much mumps virus in the MMR as there was in 1990.

The changes in the mumps virus component of the MMR serves as a potent reminder of something else: MMR is not one thing but three different exposures. And over the period 1980-2009 the MMR has changed significantly at least twice, making epidemiological studies even more difficult to interpret.

Gathered from Dan Olmsted is Editor of Age of Autism.

ProQuad has been taken off the market, coincidentally within a week or two after Ben’s shot. The manufacturer of ProQuad, Merck, has yet to reintroduce the vaccine back to the marketplace, but if they do the FDA has made a requirement in 2008 that ProQuad list as an adverse reaction, siezures and encephalitis (swelling of the brain), both of which my son developed after his vaccine.

Ben’s neurologist feels Ben’s encephalitis is caused by a viral infection, most likley the measles. But who knows?

What I do know is that ProQuad generated nearly 2 billion dollars for Merck the two years it was on the market. It was their second biggest bread winner, just behind Gardasil.

Just prior to Merck pulling ProQuad the FDA inspected their plant in West Point, PA and issued Merck a warning that Merck officials didn’t thoroughly investigate when vaccine batches failed to meet specifications, even if those batches had been distributed. Some drug components were tainted, and the plant lacked proper procedures and safeguards to ensure purity.

The federal Advisory Committee on Immunization Practices (ACIP) made new recommendations on key vaccines at its February 2008 meeting in Atlanta, ACIP voted to withdraw the preferential recommendation for the measles, mumps, rubella, and varicella vaccine (MMRV, marketed by Merck & Co., Inc. as ProQuad) as the vaccine of choice for initial vaccination of infants.

On October 1, 1988, the National Childhood Vaccine Injury Act of 1986 (Public Law 99-660) created the National Vaccine Injury Compensation Program (VICP). The VICP was established to ensure an adequate supply of vaccines, stabilize vaccine costs, and establish and maintain an accessible and efficient forum for individuals found to be injured by certain vaccines. The VICP is a no-fault alternative to the traditional tort system for resolving vaccine injury claims that provides compensation to people found to be injured by certain vaccines. The U. S. Court of Federal Claims decides who will be paid.

As of January, 2009, 12,850 cases have been filed with the National Vaccine Injury Compensation Program (VICP) , 5,535 representing autism cases. Of the total, 6,979 have been adjudicated, with 2,260 being compensated. Claims arising from vaccinations given prior to October 1, 1988, were paid from general appropriations. Petitioners filed 4,259 pre-1988 claims, with 1,187 being compensated. Over 900 million dollars of general revenue was paid for pre-October 1988 cases, including attorneys’ fees at a statutorily capped level. Payments for post- October 1988 cases come from a trust fund supported by an excise tax on each dose of vaccine that is covered by the Program. Thus far, 8,591 post-1988 claims have been filed, with 1,071 being compensated. Over 939 million dollars has been paid in compensation from the trust fund for the post- 1988 cases, including attorneys’ fees and costs. There is currently nearly 3 billion dollars in the trust fund. There is a wide range of awards depending on the severity of injury, with the highest award currently being $9.1 million in present dollars.

2008 there were 144 awards totaling $83,743,524.93 (avg. over a half million dollars per award) 5 million dollars in attorney fees were paid, in the 70 dismissed cases, the court paid out over 2 million in attorney fees (about $30,000 per case.

See http://www.hrsa.gov/vaccinecompensation for more detailed statistical information regarding the VICP.

Lastly, just the other day I discovered on the the Vaccine Adverse Event Reporting System (VAERS) Web site that ProQuad has had two deaths attributed to the vaccine. Both were submitted on November 3rd and entered in on November 4th. (VAERS ID 331196 & 331194 .

ProQuad was removed from the market back in May of 2007. A year and a half later two deaths show up on the VAERS website. This reminds me of the April 18, 2006 article in AoA about ProQuad’s study that determined that there were twice the number of children with seizures than those receiving the MMR and the chicken pox vaccine separately. Apparently in the Washington state capital of Olympia, a couple of injuries resulting from the administration of the vaccine back in January 2001 and October 2002. The injuries were not reported to the FDA until 2006, 3 months after the FDA approved ProQuad and after a reporter asked if the FDA had them. See the comments section for more about this AoA report. (to find all the Pox articles by AoA editor Dan Olmsted click here and scroll down to April 2006)

If anyone knows how to get information on the two deaths listed in VAERS please email me at bensmyson@gmail.com, obviously both did not die in November of 2008.

Also look for the post on this blog regarding the link between Varicella-Zoster virus also known as Herpes Zoster and Acquired Childhood Aphasia (ACA) which is a language impairment resulting from an unspecified brain damage. This brain damage can have different causes, such as head trauma, tumors, cerebrovascular accidents, encephalitis, or seizure disorders. Most, but not all authors state that ACA is preceded by a period of normal language development.


Science – In for a bumpy ride

benridemerck I think back to my high school science education, 2 years of biology (failed and repeated) and the in the five years I was in college I some how managed to postpone any lab sciences. So my understanding of anything that has to do with biological science or chemistry is somewhat limited to my own personal experiences with doctors and hospitals… oh yeah and my mother the nurse, hospice nurse, expert in things that can kill you.

Science is that Ben was sick in January 2007 with a serious week long bout with a fever. The fever was recorded at home by ear at 107, prior to that it was 105 and over most of the day. We reported the 105 earlier to the doctor’s call in service at UNC Hospitals.

Science shows that on January 2, 2007 Ben had some abnormal scores on his blood work. Primarily very low white blood cells (3,000), his GRAN was at 0.8 and low red blood cells (4,500). His RDW was high at 14.6 and his PLT was low at 131. Ben was very sick. Later broke out with Roseloa.

On April 18, 2007 Ben had his blood drawn again prior to his vaccines. His chart showed a check beside his hemoglobin indicating that it was within normal range. His HGB in fact was high at 13.3 as was his HCT which was at 40.1. Ben’s white blood cell count was still low at 6.2, his GRAN was low at 2. His RDW was on the low end at 11.9.

The vaccines Ben received on April 18, 2007 were:

ProQuad – MMRV

Hep A (However, note at bottom of page in chart says “hold Hep A” unsure if delivered on that day)

HIB

Prevnar

On October 19, 2007 Ben received the DTaP and note shows that the HepA was declined as was a booster.

May have had a flu shot on 10/19/07 as well.

NOTES FROM CHART

2/5/07

Eczematous patches on face

7/14/07

Ben fell and split lip

8/15/07

fever 103.8

Weight 25.7

viral syndrome

9/17/07

fever for 3 days

101.8

viral syndrome

Rx for antibiotic, “just in case”

10/19/07

mother concerned about lack of speech and not responding to name

advised to wait until first of year

vaccines, DPaT and maybe flu

11/23/07

fever, no flu booster given

104 night prior, 103 morning

antibiotics

did not notice Ben speak while with doctor

11/23/07 (evening)

fears of allergic reaction to antibiotic, Ben broke out in rash, blue lips

heart rate 100-150

no cynanosis appreciated, not sure if it is cyanosis.

11/29/07

still with fever

mom concerned about autism

mom concerned doctors unable to be positive he has OM vs. viral and wants to know if Ben could possibly have leukemia or anything else that may be causing chronic and recurring fevers.

mom also asked about seizure activity, during the day he will stiffen up and kind of be unresponsive however will have no shaking. he will wake up in middle of night or during nap screaming and crying and acts as if parents are not there, not interacting with them.

mom wonders about high fever and how it may have affected his brain and whether it can account for his behavior problems

Ben well appearing , playful, no apparent distress

seems to exhibit age appropriate behavior, maybe a bit on hyperactive side

mom very preoccupied with Ben’s behavioral what she perceives to be Ben’s behavioral disorder and is eager to find the cause at this point

recommended a workup by TEACH

feels a lot of mom’s concerns are prompted from reading on internet. told her there is more bad information about autism than substantiated information.

anything under 100.4 is not considered a true fever therefore not a concern for leukemia or chronic systematic illness

looked back at latest CBC in April and it was completely normal

12/06/07

rash

bendna

CYTOGENETICS

Ben began seeing a DAN doctor summer of 2008. She is a neurologist and specializes in children with special needs. On September 29th she drew blood from Ben. The results are as follows.

Whole genome chromosome SNP/CN microarray (CMS) copy number analysis was normal. No significant DNA copy number changes in 1.8 million region specific SNP and structual targets were detected. No increase in hommozygotsity. Normal GTG banding in all cells observed.

Fragile X – normal, 20 CGG repeats identified.

Normal male Karyotyope

ALLERGEN PROFILE – Basic Foods

No allergies to cow milk, wheat, peanut, corn, sopybean, pork, beef, fish/shell mix, egg, chocolate/cocca

IMMUNOGLOBULINS A/E/G/M SERUM

immunoglobulin G, Qn, serum 933 (453 -916 normal)

E/M/A Immunoglobulin normal

MTHFR (methylenetetrahydrofolate reductase)

MTHFR, DNA Analysis result shows C677T single mutation identified.

Hyperhomocysteinemia is an independent risk factor for cerebrovascular disease and the homozygous C677T mutation in the methylenetetrahydrofolate reductase (MTHFR) gene can induce hyperhomocysteinemia. (Hyperhomocysteinemia is a risk factor for coronary artery disease and in cases of young myocardial infarction the level is found to be elevated. Individuals with MTHFR gene mutations that reduce enzyme activity, may develop hyperhomocysteinemia and thus be at risk for vascular disease.) However, the association between this 677TT genotype and ischemic stroke still remains controversial. Therefore, we carried out this study to determine whether the MTHFR TT genotype is associated with certain subtypes of ischemic stroke.

The homozygous C677T mutation in the MTHFR gene is associated with multiple small-artery occlusions, but not with single small-artery occlusion. Findings suggest a genetic basis for certain subtypes of ischemic stroke.

A lack of the vitamins folic acid or riboflavin can lead to the inactivation of MTHFR, and the researchers have shown that humans with the C677T mutation may be particularly susceptible to such vitamin deficiency. Inactivation of MTHFR results in elevations in a compound called homocysteine. Such elevations may lead to increased risk of heart disease, strokes, and birth defects in humans.

Increasing the intake of riboflavin and folate through better diets and vitamin supplements should help prevent these potentially life-threatening problems in people at risk.

Researchers  suggest that the C677T mutation may confer protection against some forms of cancer, provided the patient has an adequate dietary intake of folic acid. Scientists must look at ways to avoid the disadvantages associated with this variation, while maximizing the advantages. Any common mutation that persists in the human population must confer advantages as well as disadvantages. If the mutant had an entirely negative influence, it would have been eliminated.

The C677T mutation can be a cause in the disease Hyperhomocysteinemia, an independent risk factor for cerebrovascular disease and the homozygous C677T mutation in the methylenetetrahydrofolate reductase (MTHFR) gene can induce hyperhomocysteinemia.  The homozygous C677T mutation in the MTHFR gene is associated with multiple small-artery occlusions, but not with single small-artery occlusion.

Small vessel encephalitis can present with motor deficits, aphasia, and/or vision changes. Commonly seen in immunosuppressed patients, small vessel encephalitis is the most common CNS complication of VZV infection.
IL-2 Receptor Alpha

IL-2 Receptor Alpha – High at 1258 (233-710 normal)

Interleukin-2 (IL-2) is an interleukin, a type of cytokine immune system signaling molecule, that is instrumental in the body’s natural response to microbial infection and in discriminating between foreign (non-self) and self. IL-2 mediates its effects by binding to IL-2 receptors, which are expressed by lymphocytes, the cells that are responsible for immunity.

IL-2 is normally produced by the body during an immune response.[10][11] When environmental substances (molecules or microbes) gain access to the body, these substances (termed antigens) are recognized as foreign by antigen receptors that are expressed on the surface of lymphocytes. Antigen binding to the T cell receptor (TCR) stimulates the secretion of IL-2, and the expression of IL-2 receptors IL-2R. The IL-2/IL-2R interaction then stimulates the growth, differentiation and survival of antigen-selected cytotoxic T cells via the activation of the expression of specific genes.[12][13][14] As such, IL-2 is necessary for the development of T cell immunologic memory, one of the unique characteristics of the immune system, which depends upon the expansion of the number and function of antigen-selected T cell clones.

Neuron-specific enolase (NSE):

Neuron-specific Enolase, serum- High at 17.4 (0.0 – 12.5 normal)

Neuron-specific enolase (NSE) is a substance that has been detected in patients with certain tumors, namely: neuroblastoma, small cell lung cancer, medullary thyroid cancer, carcinoid tumors, pancreatic endocrine tumors, and melanoma.

Studies of NSE as a tumor marker have concentrated primarily on patients with neuroblastoma and small cell lung cancer. Measurement of NSE levels in patients with these two diseases can provide information about the extent of the disease and the patient’s prognosis (outlook), as well as about the patient’s response to treatment.

ANTI-OXIDANTS – 9

Anti-Oxidants – high

8-OHdG – high

Lipid Peroxides – high

Taurine – low

MINERALS – 3

Taurine – low

B-VITAMINS

Formiminoglutamic Acid – high 21.4 (<=9)

AMINO ACIDS

Lysine – low 80 (149-1,522)

taurine – low 236 (274-1,607)

DIETARY PEPTIDE RELATED MARKERS

Anserine (dieptide) – low 2 (23-483)

1-Methylhistidine – low 65 (144-2,122)

PROTEIN MALABSORPTION/ MALDIGESTION

Lysine – low

BACTERIAL DYSBIOSIS

Benzoic/Hippuric Acids Ratio – high

YEAST/FUNGAL DYSBIOSIS

Arabinose – high 77.4 (<=63.0)

OXIDATIVE STRESS – 9

8-OHdG – high 20 (<=16)

Urinary 8-OHdG: a marker of oxidative stress to DNA and a risk factor for cancer, atherosclerosis and diabetics.

Lipid Peroxides – high

Taurine – low

ELEMENTAL ANALYSIS – Hair

As one might expect Ben has some environmental toxins due to his weakened immune system. An analysis of his hair shows that several key elements have and are poisoning him.  Some of the elements of concern are:

Antimony (Sb) is above the reference range. Hair Sb reflects past or chronic skin exposure, inhalation or ingestion of this element. Sb is a nonessential element considered to be more toxic than arsenic. Antimony’s deposition in body tissues and its detrimental effects depend upon the oxidation state of the element. Sb+3 affects liver functions, impairs enzymes. And may interfere with sulfur chemistry. If Sb impairs phosphofrutokinase (PFK), then purine metabolism may be disrupted, resulting in elevated blood and/or urine levels of hypoxanthine, uric acid and possibly ammonia. Sb+5 deposits in bone, kidney and in organs of the endocrine system: “Antimony spots” may result from skin contact with Sb salts and vapors. Symptoms can be variable, including fatigue, myopathy, hypotension, angina and immune dysregulation.

Gadolinium (Gd) is above the reference range. Gadolinium is a member of the group of rare earth metals known as lanthanides. It has been used for superconductors, magnets, fluorescent materials, and as a nuclear MRI contrast agent. Toxicity appears similar to nickel and copper, and has been associated with hair loss and skin lesions. These changes are consistent with Zinc deficiency and are correlated with increase in urinary zinc concentrations.

Magnesium (Mg) is below the reference range. Low Mg in hair correlates with increased risk of cardiovascular disease. Low Mg in hair may reflect symptoms or conditions that include muscle tremors, weakness, mental depression and cardiac arrhythmias.

Uranium (U) is above the reference range. Hair levels of uranium may reflect past or chronic ingestion. Most exposure  comes from natural uranium in ground and drinking water. The major toxicology concern of U238 excess is biochemical rather than radiochemical. U is a reactive element which is able to combine with and affect metabolisms of: lactate, citrate, pyruvate, carbonate and phosphate.

Ben’s levels of Mercury and Lead were within reference range.

Like I said at the beginning I have no idea what any of this means. I’ve been told it means he has a weakened immune system.

I’m So Happy

Words

Food – not what it used to be

beneatingthennow

I guess one of the first changes in Ben’s personality was his dramatic change in feeding habits. He went from eating damn near anything to eating ONLY food that crunched and food that was beige in color. He will be 3 in April and we still have to hand feed him babyfood out of a jar. He began eating baby food in July about once or twice a week. Prior to being a year old he ate beans, rice, meat, spaghetti, potatoes, sweet potatoes was a favorite, corn, peas, squash, blueberries, strawberries, apples, carrots, did I say squash? He loved it all, especially if we were eating it too. On February 6, 2007 there is a note in Erica’s journal that said, “Eating table food, ate an entire table meal today, turkey, carrots, peas, corn, and yogurt. You talk non-stop. ”

Ben breast fed until he was old got too greedy at the spigot and would chew on it causing the spigot great pain.  But Ben was eating all kinds of stuff prior to his being cut off from the spigot. But around August 2006, September 2006 he started loosing ground on his weight, where he once was in at 95% he is now starting to slide. At 6 months he was at 75%, at 9 months 50% and at a year 30% and at 16 months 25%.

On August 22, 2006 Ben received his HepB, Hib, DTaP, IPV, Pretnar vaccines. Pedvax

On October 25, 2006 Ben received his Prevar. Pedvax.

On April 18, 2007 Ben received his ProQuad and Prevnar, HIB, HepA

At 18 months, October 19, 2007 he received his DTaP and possibly a flu shot

We pretty much let you eat whatever you wanted to help get your weight up. If you wanted cake, have two pieces, whatever it took. Mostly up until you just stopped, your favorite foods were sweet potatoes and carrots. I remember because his body was stained orange from all the orange food he used to eat.

When Ben stopped eating “real” food we never really saw it as a problem. We knew he used to like it and just figured he was being stubborn. We put the foods on his plate, thinking if he is hungry enough he will eat it but most meals consisted of Cheerios and baby-food.

After the discovery of the possibility of Ben being autistic we immediately went to the casein free, low gluten diet. We introduced fish oil and some vitamin supplements and noticed an improvement right away with eye contact and show of affection.

benbreakfast500For the past 18 months Ben’s breakfast has been yogurt with fish oil, and a super dose of vitamins and minerals. We have just, in the past couple of months, introduced a toxin cleanser and lysine as well. The diet is under the advisement of his doctor and seems to help. We have not stopped it to see if we notice changes.

There is some concern his body will become addicted, lack of a better word, to having this stuff introduced externally by artificial means and will have to maintain this the rest of his life. (still hoping for full recovery)

If it is beige and crunchy chances are Ben might try it. If it isn’t he may just gag or vomit just looking at it or touching it. The first time I saw this was on Mother’s Day when I placed a strawberry (he used to love them) on his plate and he touched it and gagged. Erica said he does it frequently when introduced a food item he dislikes.

We don’t know if it is texture or sight, or maybe the thought of what it would be like to eat. His occupational therapist who is working on his sensory issues thinks it is a combination. At one time thinking maybe he forgot how to chew and he experienced that crunchy things smash easily and don’t seem to be broken up, like maybe a string bean is or meat causing a choking episode. There has been thought that it is a safety issue with him. Maybe he had a bad experience with some sort of food product and steers clear of things that remind him of the “bad” item.

Whatever it is he just won’t eat “normal” foods. Every now and then he will eat something and we will get so excited. See, we introduce things to him all the time and are rejected about 95% of the time. I remember the time he ate a french fry (now one of his favorites) I was so excited. To me a french fry is one step from a chicken mcnugget and once that frenchfrychickenmcnugget kids meal gets washed down with a coke, then heck fire, the boy has consumed a lunch every kid eats, something worth celebrating. Next thing you know he’ll want one of those fried apple pies. Can’t get anymore normal than that huh? Fingers crossed!