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.