Gardasil Firestorm In Denmark and HPV Vaccines: Updates From Central And South America
JUNE 21, 2015 By Norma Erickson
In March 2015, a Danish national television station (TV2) aired a documentary focusing on girls who suspected they had been injured by the HPV vaccine Gardasil. Immediately after the airing of the show, girls with similar experiences started coming out of the woodwork. Virtually all of the girls had the same story to tell.
They began to have serious new medical conditions shortly after using Gardasil so they would go to the doctor. According to Luise Juellund, the vast majority of doctors would tell them the HPV vaccine has no serious side effects and offer psychological problems as an alternative reason for the new symptoms.
Luise should know, her daughter is one of the seriously injured and cannot be left home alone because of daily seizures and hour-long periods of unconsciousness. After disclosing the new symptoms she was experiencing after Gardasil, she was referred for psychological evaluation. Psychiatrists cleared her and she has now been diagnosed with POTS (postural orthostatic tachycardia syndrome) a suspected side effect of HPV vaccines.
According to Peter la Cour, Head of the Center for Functional Disorders in Copenhagen, the practice of refusing girls the opportunity for medical examination and treatment on the grounds that psychological problems can cause similar symptoms is terrible. He states:
The handful of girls I’ve seen has not been mentally ill, but very physically sick and disabled. We simply cannot have sick people rejected under the assumption that they are mentally ill. None of us know anything about why they are so sick. Alleged knowledge of psychological reasons is scandalous character assassination of the young women.
Serious Adverse Reactions Reach One In 500
Denmark is divided into five healthcare regions. On June 1, the government established a single point of entrance in each one of these regions to accept and examine anyone suspected of having a negative reaction to Gardasil. The response was overwhelming.
The influx of girls seeking care was 60% higher than expected, suggesting the harmful effects was greater than Danish health authorities had foreseen. By June 9th, the waiting list to be evaluated was at least six to nine months long. (See map below.) Two of the five centers did not know how long the girls would have to wait.
Jesper Mehlsen from Synkopecenteret at Frederiksberg Hospital is one of the specialists who takes care of the girls. He stated:
We thought it (the serious adverse event rate) was about one in 10,000 people who had side effects. Now it turns out that there are at least two per 10 000. Suddenly it was doubled.
Unfortunately, the avalanche of girls seeking medical diagnoses and treatment after their HPV vaccinations continued to increase.
Only two days later, on June 11th, Dr. Jesper Mehlsen had to revise his estimate of the number of injured girls stating:
A realistic estimate is that one in 500 girls – or 1,000 of the 500,000 vaccinated experience serious side effects.
Dr. Mehlsen helped to research the HPV vaccine and personally vaccinated 3,000 girls. Now, he operates the regional intake center in Frederiksberg and will be in charge of coordinating work across the country. He noted that as of June 11th, 360 girls had been referred for study.
Dr. Stig Gerdes fears this is only the tip of the iceberg. He stated:
It will not it surprise me if we end up reaching several thousand who have been sick. I even stopped administering Gardasil a few years ago, after vaccinating about 100 patients.
More than a handful of them became ill after the vaccine. Several of them very, very seriously and completely devastated.
Is HPV Vaccine Safety Based On Mere Guesswork?
Danish Health Minister, Nick Haekkerup, and the National Board of Health continue to defend the use of the HPV vaccine Gardasil despite the more than 600 young girls suspected of becoming seriously ill from the vaccine.
Both still claim the vaccine is safe and the benefits outweigh the risks.
Experts who are working with the injured girls disagree. Coordinator of the Danish Society of Obstetrics and Gynecology’s national guidelines for HPV vaccination, Gynecologist Jeppe Schroll states:
We can simply not say because we do not know. There is so much uncertainty in the studies that were made on the vaccine – so it is a pure guess. It may well be that they (the health authorities) are right, but it could just as well be the opposite.
His opinion is reinforced by Dr. Diane Harper, who helped develop Gardasil for Merck and stated:
There is no data to substantiate that the benefits outweigh the risks. The truth is that we know very little about the side effects of the HPV vaccine.
Dr. Schroll suggests that Merck’s own analysis of possible serious side effects is based on a questionnaire which clinical trial participants completed two weeks after the vaccine was given.
In the years since, women are asked whether they have received ’new medical conditions.’
According to Dr. Schroll, this provides a high degree of uncertainty. Some may get sick during the first 14 days, but women who become ill later may not connect it to the vaccine.
Dr. Schroll stated another source of error is that in the last major Danish/Swedish study among a million girls only looked at those with a diagnosis; not necessarily those with a list of symptoms such as debilitating paralysis of the arms and legs, pain, chronic fatigue, sudden daily fainting, daily migraines and dizziness – like the more than 600 Danish girls currently referred for evaluation.
According to Dr. Jeppe Schroll:
I think the reason why they have not found the side effects in the studies is that they have not been looking for them.
Experts Weigh In On HPV Vaccination Policy
Danish GP’s believe one should examine the many sick girls who are suspected to have had adverse reactions to Gardasil before even considering implementing Gardasil 9.
Deputy Chairman of the PLO and member of the Board of Health’s vaccination committee, Niels Urich Holm agrees, stating:
We know too little about the side effects. We fear first, that it (Gardasil 9) might have more side effects than the current one (Gardasil), which has greater side effects than other vaccines. And secondly, we believe that it would be prudent to await the investigations currently going on in all regions to find out about the disease and symptoms we have seen in a number of girls, maybe caused by the vaccine. Therefore, one should wait to introduce the new HPV vaccine, which is being approved for use in Denmark until the five new regional HPV centers have studied the sick girls who received the current vaccine properly.
SF (Socialist People’s Party) spokesperson Ozlem Cekic also backed up the GP’s request that the cautionary principle be applied when she stated:
I do not understand why the National Board of Health is so eager to launch a new HPV vaccine. I think overall that the Agency has behaved foolishly in this case, where they have been too slow to react. We can see that many girls may have become ill by severe side effects. It shall be fully investigated.
She also stated that the Socialist People’s Party will take HPV vaccine issues up politically after the election and shall require deeper insight into the documentation underlying the vaccine.
Health Rapporteur Liselott Blixt of the Danish People’s Party was one of the people who led the effort to get the HPV vaccine Gardasil introduced in Denmark in 2008. She now wants it abolished. She states:
The fact that we have so many, perhaps up to 5,000 young women who suddenly become so sick must have the consequence that we simply stop the vaccine. I was the first who said a big ‘yes’ to it, but now I will also be the first to abolish it, because we politicians must take responsibility for ensuring that we have adopted it. Not least in light of the fact that we do not actually have any treatment options to offer the most sick.
Let’s hope the authorities in Denmark follow expert advice and make sure that young women’s health is no longer sacrificed for the promise of a benefit fifteen to twenty years from now.
No healthy young woman should have to sacrifice her health to see if a cancer prevention experiment will work!
JUNE 13, 2015 By Norma Erickson
Are HPV vaccines the number one cause of coincidence around the globe?
Are we facing one of the worst epidemics of mass hysteria the world has ever seen? Apparently, health authorities around the world would like us to believe one of these two scenarios.
Almost without exception, survivors of new medical conditions after the administration of Gardasil or Cervarix are told their problems are coincidental, psychosomatic, mass hysteria, conversion disorder, and so on…ad nauseam. The health authorities in one country (Colombia) even went so far as to attribute new medical conditions after Gardasil to the overuse of Ouija boards.
If all of the above fail, the next step is to try and blame the new symptoms on the parents with phrases like Munchausen by proxy, factitious disorder, fabricated or induced illness, attention seeking, simply out for money, and so on.
The first problem with all of these theories is they are usually put forth after little or no medical investigation. This leaves parents who believed their health authorities and had their daughters injected with the newest miracle vaccine feeling confused, abandoned and betrayed by the very people they trusted to protect their children’s health and well-being.
The second problem with all of these theories is they delay potentially life-saving treatments which could be provided if investigations took place, accurate diagnoses made and treatment protocols designed and implemented.
Read the following updates and ask yourself – What is wrong with this picture?
Colombia: First Reported Fatality After Gardasil
On May 22, 2015 16-year old Karen Durán-Cantor died after complications related to new onset autoimmune disorders believed to have been triggered by two injections of Gardasil, the human papillomavirus vaccine currently being given to school age girls throughout the country.
Karen received her first Gardasil shot at the end of 2013 and the second one a few months later in early 2014. According to her mother, Karen’s hands got swollen almost immediately.
She began to experience joint and finger pain that was diagnosed as Juvenile Rheumatoid Arthritis. Despite receiving medical therapy, her disease progressed forcing Karen to stop attending school due to the constant severe pain. Consequently, she was not able to graduate from high school with her classmates.
Karen and her family sought a second opinion in Bogotá’s Clinica Colsubsidio where she was also diagnosed with pleural effusion requiring drainage to help her breathe. By this time, Karen had lost the ability to walk. She could not go to the bathroom or take a shower by herself. She had nearly constant pain on the right side of her body (the side where the Gardasil injection was administered). Karen frequently complained she was short of breath and it was difficult for her to breathe.
Just prior to her death, Karen experienced difficulty breathing and required oxygen. She was referred to La Samaritana Hospital in Bogotá where she was admitted to the Intensive Care Unit where she developed fatal respiratory failure.
These are photos of Karen before and after her Gardasil injections. Please note this dramatic change occured between the end of 2013 and the middle of 2015 – approximately a year-and-a-half.
Despite her personal pain, Karen produced a video to warn others about the possible consequences of using Gardasil shortly before her death.
This is the first documented death after the development of autoimmune disorders following the administration of Gardasil in Colombia.
In addition to the pain and grief this family has already had to endure, they have a long journey ahead of them as they attempt to locate a forensic expert to determine the exact cause of their daughter’s death.
Karen’s family is not alone in Colombia. Hundreds of girls have developed new medical conditions that may have been triggered by Colombia’s recent mandatory HPV vaccination program. The Colombian National Institute of Health did carry out an investigation. The lead investigator was Dr. Fernando De La Hoz, a prominent epidemiologist, who resigned after concluding that the adverse events developed by the girls was a result of mass psychogenic disease.
What is wrong with this picture?
Mexico: Several schools cancel HPV vaccinations
Gardasil was introduced in Mexico in 2008, but only to 125 targeted municipalities with the ”lowest human development index” which were estimated to have the highest incidence of cervical cancer. The quadrivalent HPV vaccine was delivered to these communities via mobile health clinics to girls who were 12-16 years of age using the currently recommended dosing schedule of 0, 2, and 6-months.
In 2009, the program was expanded to include 182 municipalities, still with the ”lowest human development index,” but this time with the first two doses being delivered at 0 and 6 months and the third dose 60 months later (5 years) and the targeted girls being ages 9-12.
Considering the current Supreme Court Case in India, one has to wonder… Were these parents informed of the fact their daughters were participants in a clinical trial to determine appropriate dosing regimens?
Why did both programs target girls in so many locations with the lowest human development index? What was the rate of adverse events among the participants?
In 2011, Mexico’s National Immunization Council approved a nationwide expansion of its HPV vaccination program to include school-based HPV vaccination for all 9-year-old girls.
Two months before leaving office in 2012, Mexican President Felipe Calderon made HPV vaccination mandatory for all 11-12 year old girls.
According to Chapter 4 of the Comprehensive Cervical Cancer Control: A guide to essential practice, published on February 11, 2013 by the World Health organization, Mexico is currently using alternative dosing schedule, which is not approved or recommended by WHO at this time. (verify on page 6)
May 2015, after only 500 doses of Gardasil were administered under this program, the Mexican Social Security Institute (IMSS) had to cancel the HPV immunization program at some schools because parents were refusing to allow their 9-year-old girls to receive the injections.
What Is Wrong With This Picture?
Brazil: Uptake Of HPV Vaccine Drops From 83% To 40%
In 2012, Gardasil sales in Japan generated $140 million. In 2013, the Japanese Health Ministry rescinded its recommendation for the use of HPV vaccines causing Merck to look for replacement markets.
By August of the same year, Brazil had agreed to set aside almost $160 million for the purchase of HPV vaccines for use in 2014.
But, 2014 would not be Brazilian girl’s first exposure to Gardasil. According to an article published in Elselvier’s Trials in Vaccinology in 2013, clinical trials using Gardasil were being conducted in the municipality of Campos dos Goytacazes, Rio de Janeiro, Brazil during 2010, 2011 and 2012.
According to the abstract, the objectives of these trials were:
Assess vaccination coverage in that municipality after adopting several strategies for active search and missed opportunities for vaccination against HPV. Evaluate acceptance for the vaccine and reasons for refusal the HPV vaccine. Evaluate the frequency and occurrence of adverse events to that vaccine. A survey of reduction of genital warts was also conducted.
The paper goes on to state that between September 2010 and December 2012, approximately 90,000 doses of Gardasil were used. This number of doses should have covered 30,000 recipients.
However, the ’evaluation of the frequency and occurrence of adverse events’ consisted of conducting a survey of 1,000 randomly selected teenagers to be followed up on 96 hours after vaccine administration to evaluate safety and tolerability.
The authors stated the results of this survey as follows:
There were observed a total of 430 local and systemic events in 360 subjects (36% of 1000 girls), stratified by each dose received. No serious adverse events or any hospitalization were reported;
96 hours; only four days? Are these people serious? How can the safety and tolerability of any vaccine be accurately assessed only 4 days after administration?
Nevertheless, the authors’ conclusion confidently stated:
According to our results, it seems evident that the good coverage achieved by vaccination against HPV in Campos dos Goytacazes, coupled with no serious adverse events to the vaccine reported throughout the study, point to the feasibility of this vaccination strategy, which can also be used in other municipalities. Taking into account not only the benefits but also the results with regard to the reduction of genital warts, amply demonstrated by international studies  and , we then seek to suggest the inclusion of HPV vaccination in the Brazilian calendar.
By the end of the same year this study was published, Brazilian health authorities had committed nearly $160 million precious healthcare dollars to the purchase of Gardasil for their 2014 national immunization program.
Between March and May of 2014, 83% of the targeted girls (ages 11-13) in Brazil had received their Gardasil injections. By the end of the year 100% of the targeted 4.9 million girls had been vaccinated.
During the same period (March through May) this year another 4.9 million girls (ages 9-11) were targeted, but only 40.2% of them took the vaccine. Could it be because of stories like these?
What Is Wrong With This Picture?
Implementation of the quadrivalent vaccine against HPV in the Municipality of Campos dos Goytacazes, Brazil
Tuesday, June 23, 2015
Posted by ed. dickau at 6:23 AM
Friday, June 12, 2015
JUNE 4, 2015
The R.E.G.R.E.T. Support Group was launched recently in Ireland by parents of chronically ill teenage girls. These parents blame an injection the girls received at school as the cause of their daughters’ illness. The drug in question is called Gardasil and is being marketed as an anti-cancer vaccine. R.E.G.R.E.T. is an acronym for“Reactions and Effects of Gardasil Resulting in Extreme Trauma”.
Members of ten families from all over the country came together to share experiences and express their exasperation at the inability of health authorities to recognize the pattern of serious adverse reactions being suffered by children who, up until receiving the Gardasil injection, enjoyed an active healthy lifestyle. One of the main complaints raised at the meeting was that the information provided by the HSE (as part of the ‘informed consent’ process) is extremely misleading, particularly with regard to how safe the vaccine is.
High incidences of serious reactions have been reported in the U.S ever since Gardasil was released there in 2006. Even the drug manufacturer’s own clinical trials reveal a 1 in 40 (2.5%) incidence of a serious adverse reaction*, yet Irish parents are still told by the HSE that Gardasil is ‘very safe’.
Although its cancer-preventing properties have never been proven, the HSE insists that the benefits of Gardasil outweigh the risks and even claim that it has been ‘fully tested’. This is despite the limited safety testing that took place as a result of this “life-saving vaccine” being fast-tracked through the regulatory approval process. HSE did not inform parents that Gardasil contains genetically engineered non-human recombinant DNA, the effects of which are unknown and unpredictable when injected into a human host.
The types of long term debilitating health conditions reported by Irish parents have in many cases meant that the girls are unable to continue their education in school. Because of the nature of the chronic illnesses, Irish doctors and consultants are unable to offer any effective treatment. With 1 or 2 rare exceptions, medical professionals dismiss these serious reactions as unrelated to Gardasil and merely coincidental. When tests come back negative, parents are often told that their girls simply have psychological/psychosomatic problems.
The group also launched the website www.Regret.ie, where parents can read first-hand accounts from Irish victims and their families. The site is a focal point for raising awareness among other parents whose daughters have yet to receive the injection, with the schools vaccination program set to resume in September.
The group can be contacted at Support@Regret.ie
According to Catherine Weitbrecht, spokesperson for R.E.G.R.E.T.,
Since the group was formed, 4 new parents with daughters injured by Gardasil have come forward via the website to join our group. 2 of these stories are particularly horrendous. One is so depressed she has to be watched 24/7; the other has a bleeding disorder so bad that she could literally bleed to death if she has a small accident. The third girl had POTS and the fourth has seizures.
It seems Gardasil and other HPV vaccines are causing the greatest epidemic of ’conversion disorder’ the world has ever seen.
*According to the FDA a serious adverse event must fit one of the following criteria: death, life-threatening, hospitalization, disability or permanent damage, congenital abnormality/birth defect, or the requirement to intervene to prevent permanent impairment.
If I could turn back time....I would go back to 10/1/13, the day before Korey received the 1st Gardasil vaccine for HPV. I would not have allowed the Pediatrician to give her the HPV Vaccine just as I had refused it for the previous 4 years!!!!
But, I had not heard anything negative about Gardasil, and mistakenly, I thought she needed this vaccine. Why would our Pediatrician give this vaccine if it was not proven or safe? Gardasil is a 3 dose vaccine. I have heard it is not recommended for those with asthma, but I was not told this when she received the shot. Korey has pretty moderate asthma, well-controlled but asthma, nonetheless.
If I could turn back time, Korey would not have received any Gardasil shots. The sad reality is that she received shots 1 and 2 of the 3 dose series.
The first on 10/2/13 seemed uneventful. She received the 2nd booster on 12/2/13…This changed Korey’s life and ours as we had come to know it! She never received the 3rd shot since she became dizzy and nauseous within a few days of receiving the 2nd shot. The 2nd shot had triggered a downward spiral in her physical, mental, and emotional health.
We brought her back to her Pediatrician on 12/9/13 with complaints of dizziness and nausea. We got a referral to see a GI Doctor at this visit. Our Pediatrician offered a Neurologist referral at this visit also, but we did not pursue this since she said she had not seen any other issues with the Gardasil Vaccine. The dizziness became full blown vertigo and was constant and accompanied by vicious nausea.
It is now 2/18/15 as I write “Korey’s Story”, and the vertigo and nausea are still with her! There were also subtle changes and symptoms that now make sense. Korey reported visual disturbances such as blurred vision, floaters, and sensitivity to light. We mistakenly thought this new set of visual issues was related to Korey’s visual processing and went back to her Neuro-Optometrist. He thought her viscera had stretched causing floaters and also that her vision had become unstable.
Korey’s anxiety seemed to increase, and she no longer could sleep in her own room: She felt flutters in her heart and also reported a rapid beat. She could not get to sleep and when she did had terrible nightmares and “movies” that would play out in her head. This would terrify her.
At the beginning of her freshman year in September of 2013 (before Gardasil), she had signed up to take a trip to Epcot with the Concert Choir.
By the time January, 2014 (after Gardasil) rolled around we tried to cancel her out of the trip, it was too late to cancel….it was also obvious that she could not go out to Florida with teachers and classmates without our support.
In late March of 2014, she experienced a panic attack when we were at a Conference where Temple Grandin was the keynote speaker. Both Korey and I are great fans of Temple’s. (Temple Grandin is world renown for developing a humane way to process cattle at the meat plant AND also as an advocate for people with Asperger’s Syndrome, which Temple has and has learned to embrace.) Temple Grandin noticed Korey’s VOAG book as we were walking in the lobby where she was being interviewed.
She stopped the interview and called Korey over and signed the VOAG text book…she chatted with Korey a few minutes! This was very exciting for us, especially for a VOAG (Vocational Agriculture) student – this was the bomb!
Unfortunately, later in the day there was a heckler in the crowd which terrified Korey, and we had to leave, missing some of the workshops we signed up for.
We decided to take the trip and travel by car and meet the group. Korey could not travel by plane due to increasing anxiety and increasing vertigo and nausea. She drove to Disney with us in April of 2014. It was a tough trip as she was unable to stay in her assigned room with three roommates, she was unable to stay in the Parks with MHS Concert Choir and Band due to the crowds, and she was afraid of passing out on stage when practicing for the performance at Epcot.
I had to give her medication for the choir rehearsals and also for the main performance. She was visibly unhappy on stage and so different from previous performances in Middle School and after when she had been able to sing a solo at a summer student Cabaret.
I was not sure what happened to “our girl” but was certain “something” had changed. Music and singing were her passions along with horses and animals which explains her applying for the VOAG Program. (It was not until months later we found out heat has a huge impact on people with POTS.)
When we returned from our trip to Disney in April, I began to try to find a professional to pull all of Korey’s information together and tell us what was happening to her. The panic attacks became more frequent. She opted out of singing at one of the required concerts for the Choir and chose to do a research paper instead!
During the past few months, we added many new complaints to Korey’s list of things that were not quite right: Fatigue, joint pain, muscle aches, tremors, tics, headaches, neuropathy, the feeling as though she would pass out. She would cry frequently and just be out of sorts….not the same girl she was at the beginning of freshman year.
We were referred to a wonderful Neurologist and saw him for our first visit on 7/10/14. He was with us for three (3) hours!!! He reviewed an MRI Korey had earlier in March of 2013 relative to her hearing….this was normal. He reviewed the medical records I brought to our appointment about Korey’s previous medical history.
He listened to what she had to say, how she felt, and all the varied symptoms she reported. He conducted a thorough physical examination. He drew 16 1/2 vials of blood for various labs he planned to run. His initial assessment was that something triggered what he believed to be a chronic auto-immune disease such as Lyme….he mentioned the possibility of something called PANDAS or PANS which would encompass the many psychiatric disorders that seemed to be presenting. The “something” that would trigger an auto-immune avalanche like this could be a virus (PANDAS = strep) (PANS = a virus, bacterial infection, or a toxin something organic or environmental.
We met with our Neurologist again on 8/16/14 to discuss the results of the initial blood-work. We found out that Korey’s B12 was lower than it should be due to a genetic mutation, MTHFR C677T. He told us she would need to take a special form of B12 that her body could absorb and told us where to find it. He also noted that her D3 was 31 and although technically within range, he would like to see her in the 50-60 range. We began to give her 5,000 iu of D3 a day. Several Lyme tests were run including the Western Blot.
Some of the testing reported results as non-reactive, however, the Western blot showed bands which indicated that Korey had been exposed to Lyme….Dr. suggested we try a series of 5 injections of Bicillin-LA: one injection a week. He gave Korey a Neuropsych test via computer (Cognitive Health Assessment) which measured 7 areas: memory, executive function, attention, visual spatial, verbal function, information processing speed.
We were with our Neurologist for 1 1/2 hours! His physical exam alerted him to her blood pressure….something prompted him to take the blood pressure standing as well as sitting and also taking her pulse in both positions. This may have been in response to her describing chest discomfort and a racing heart.
He told her it was important to stay well-hydrated and that she should increase her iodized salt intake. We learned the racing heart and sensation that she might pass out which she reported to us month’s previous tied into the blood pressure drop upon standing while the heart rate increased. This is what our doctor suspected was something called POTS (Positional Orthostatic Tachycardia Syndrome), and the dysregulation of the autonomous nervous system.
We knew from our first visit that there were many suspected issues with the central nervous systems. We told him of some new developments with Korey….more panic attacks and even some self-harm incidents and thinking.
We had tickets to a One Direction Concert in Foxboro, MA. and had to leave the concert with an escort as Korey experienced a very bad panic attack….she spent 8 months looking forward to the concert and then fell completely apart as One Direction was performing! This was the same girl who enjoyed seeing Selena Gomez, Demi Lovato, and The Wanted in Concert in the past and without any problems.
The doctor really felt she had this PANS he had mentioned before….PANDAS was ruled out with the blood-work – Strep was not the problem with Korey.
Our 9/24/14 follow-up visit was to review the response to the 5 Bicillin-LA injections. Korey reported feeling worse after the injections. Again, Doctor examined Korey and reported the blood pressure going down and heart rate going up when she stood vs. sitting. He reviewed the results of the Neuropsych testing which showed a tremendous cognitive decline. Korey had been telling us for months that she just could not think or absorb and being in class was terrifying.
He examined her and again found the blood pressure and heart rate discrepancies. He said that this was the reason she felt like she would pass out when walking. He planned to order a SPECT-scan to check the blood flow to Korey’s brain.
We returned to Doctor on 11/20/14….he drew the PANS labs (Cunningham Panel). The CDC is now acknowledging PANDAS, however, they are not yet there with PANS. The labs are not approved by the FDA yet. The labs are another piece of supporting information in diagnosing PANS. The diagnosis comes from clinical criteria….on paper and by exam and reporting, Korey had this mysterious PANS.
It made a great deal of sense since the “trigger” would attack and cross the blood brain barrier which results in the multiple psychiatric diagnoses. PANS results from an attack on the central nervous system. The blood-work would take 6 to 8 weeks to get the results back, and we scheduled our next visit to Dr. for early February, 2015.
On 2/20/15 she saw a Neurologist in NY City for a tilt table test and also for nerve conduction testing. The POTS was verified that day as well as demyelinating neuropathy!
The nurses at school were monitoring Korey’s blood pressure and heart rate three times a week. Her psychiatrist had put her on a small dose of Adderall to help with her diminished executive functions, and I had read that this could affect heart rate and requested that they monitor her.
This was a blessing in disguise as her bp would dip and the heart rate would soar leaving her feeling like she would pass out, exhausted, and weak. She would actually get the visual disturbances during these episodes and see a black tunnel.
The Psychiatrist actually took her off the stimulant the day before Thanksgiving due to the tachycardia observed. The nurses at school were extremely uncomfortable with her readings on 12/8/14, and wanted me to pick her up and take her to the Emergency Room. The ER staff could see the tachycardia and blood pressure drop, but the EKG was normal. We set up an appointment with a Cardiologist who took care of me when I was pregnant. I knew he would be a great match with Korey as he has two girls her age AND he is so very compassionate and kind in addition to being extremely competent.
We saw him the afternoon of 12/10/14, and he witnessed the POTS in action as he conducted a very non-technical but effective test. He had her lie down for 3 minutes taking her pressure and pulse…then he had her sit for 3 minutes while he again checked her blood pressure and pulse. He repeated this with standing; however, she could not stand for the duration….she was going to pass out. He ordered a stress test and an echo cardiogram to insure that she did not have a cardiac issue that was causing her blood pressure and heart rate to react like this.
We had a PPT regarding Korey’s medical status and IEP revisions on 12/11/14: Doctor sent a letter explaining that he was treating Korey for chronic Lyme and that she had experienced a significant decline in her cognitive ability. He went on to report that she may not be able to be in on time or everyday….it would just depend on how she felt. The team came up with some possible solutions….I requested that Korey be allowed to drop Biology since she was flunking the course and one less course might allow her to do better on the other courses. They were going to switch Geometry classes, and our home district was going to provide a one-on-one tutor to work with Korey on her course classwork and homework. They were going to try and send the tutor to Middletown High at least 4 days a week. She was going to be taken out of Cafeteria Study Hall which was very noisy and difficult to concentrate and spend the time with her tutor instead. We had planned to implement the changes after Holiday Break. Korey had the SPECT-scan on 1/2/15 while on break.
Korey started back at school in January 2015, but could not absorb in a typical classroom environment nor could she navigate several courses one after the other….she could no longer navigate the halls, and the POTS and Lyme worsened. We withdrew Korey from Middletown High School Vocational Agriculture Program and brought her back to our home district for homebound tutoring.
This is not a long-term arrangement but a necessary accommodation to have Korey continue her sophomore year. I take her to our Central Office for 2 1/2 hours of one on one tutoring 4 times a week. We have arranged the schedule around Korey’s medical needs.
This is where we are at now….she has started IVIG treatment for neuropathy and autoimmune issues. This is not a magic fix…she has only had three treatments as I write this, and the process is still being tweaked, and her body is adjusting to the treatments.
If I could turn back time….Korey would still be happy and healthy. She would still be enjoying horseback riding at Ray of Light Farm and also at High Hopes. She would still be going to school and in the Vocational Agriculture Program at Middletown High School.
She would be volunteering at Ray of Light Farm for her Supervised Agricultural Experience Credit: SAE coincides with the VOAG Program….She was spending a few hours each Saturday helping to muck the stalls and tend to horses and other animals. Ray of Light held birthday parties on Saturdays, and Korey often led one of the ponies for the pony rides for the party-goers! The was the best of all worlds and a truly wonderful SAE placement for Korey as it gave her the animal / human experience, but also the interaction skill practice with both adults and children. She often gave Farm tours for those attending the birthday parties.
If I could turn back time, Korey would not have several Syndromes caused by Gardasil…..she would not experience extreme fatigue, pain, numbness and tingling, twitches and tics. She would not have constant headaches, dizziness, and nausea. She would not have blurry vision and floaters or the torture which comes with having PANS.
Korey would be singing in Concert Choir and proud of her beautiful soprano voice. She would be taking care of our own menagerie of animals at home. She has 3 dogs, 2 outdoor cats, 3 Peking ducks, 16 or so chickens and guinea hens, and of course, Snickers, her handsome Calico rabbit that came from Ray of Light Farm! She would still be earning extra SAE hours for taking care of our animals and cleaning the coops and yard….That is if I could turn back time.
Posted by ed. dickau at 5:50 AM