Sunday, June 14, 2015

Korey’s Gardasil Story – If I Could Turn Back Time by Andrea Herlth


Korey’s Gardasil Story – If I could turn back time

By Andrea Herlth 
Higganum, CT

Sane Vax, Inc.     11 June 2015

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.
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