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.
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.
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.
JUNE 11, 2015 By Andrea Herlth from Higganum, CT
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.
|
No comments:
Post a Comment