First Dose of Pfizer on 01/06/22
8 yrs old
Told by Ryleigh's mom, Jennifer Jones.
Note from Real Not Rare: This is a long story, and heartbreaking to read. The doctor's mistreated and misdiagnosed this poor child for months! If you don't have time to read the whole thing, jump to the April 5th date on her story below. Where a wonderful doctor finally properly tested and diagnosed Ryleigh.
Q: What was her life like before she got the vaccine?
She has been a well behaved young girl who loves life, dance, friends, baseball, riding bikes, vacations, and her parents and sister. Ryleigh is beyond her years in maturity. She always wants to be older than she is and is able to hold intellectual conversations well. At school she is known as the teachers pet and the sweetest little girl ever. She would give the shirt off of her back to someone.
Q: Would you like to share your reasons for getting her vaccinated?
We thought it was the right thing to do. I wanted to get back to a normal state and Ryleigh really wanted to get back to normal and leave the mask out. She asked me a billion times for the vaccine. Regrettably, I did it.
Q: Please share your experience with Ryleigh's medical care, and any diagnoses she has received:
Ryleigh went to the hospital EIGHT times!! She was misdiagnosed EIGHT times!!!!
John Hopkins just dismissed her!
We had to go to New York City for a diagnosis, and that was hard considering she lost her ability to walk and can't feel when she has to urinate.
The improper FND diagnosis caused us to be dismissed by other doctors!
They weren't taken us seriously and running the proper tests.
04/05/22: Current Diagnoses after months of searching for a good doctor: CIDP, Small Fiber Sensory Polyneuropathy, Orthostatic Intolerance, and CNS Neuropsychiatric disturbances in the settling of prior anesthesia and COVID Pfizer vaccination.
Q: What was her reaction, symptoms, & timeline?
Jan 3, 2022
Ryleigh has her first dental anesthesia procedure.
Upon waking from the general anesthesia Ryleigh had no adverse effects and no additional medications were onboarded.
She came home with Ibuprofin and resumed normal activity the next day.
January 6, 2022
Ryleigh received the first of two doses of the Pfizer COVID Vaccine at 8:55PM.
January 12-13, 2022
I tested positive for COVID January 13, 2022.
We had the whole family tested for Covid - as symptoms were present.
Ryleigh tests Negative on Rapid and PCR results negative as well.
Ryleigh had symptoms consistent with Covid for 48 hours.
February 9, 2022
Ryleigh goes under anesthesia again for removal of two additional teeth.
When waking from this procedure, Ryleigh had a swollen lip, a sore throat, a severe headache, a stomach ache, and chest pain.
Doctor said surgery was uneventful and Ryleigh recovered well from anesthesia.
February 15, 2022
Ryleigh changed. She became a different person. I have never seen her behave like this before.
I found her in her room tearing paper and I was not able to get a response out of her.
She curled up in a ball and was unable to be consoled.
We went to the ER for the first time.
I told the hospital that I believed she had a reaction to the vaccine, however it is not noted in the chart.
They just evaluated for suicide intentions, gave us a safety plan, and sent us home.
Ryleigh doesn’t have any memory of these seizure like episodes where she goes into a rage and becomes mentally incapacitated.
February 16, 2022
Ryleigh has another couple of seizure/fainting like episodes - one where she is unable to communicate with us.
Ryleigh slept most of the day.
Acting completely out of character for her.
We head again to the ER for visit number 2.
Ryleigh tells the staff that she is hearing voices. CREST/CRISIS is engaged for assistance on an outpatient basis.
Ryleigh was discharged with "behavioral issue."
No Blood work taken!
February 17, 2022 – Today we dealt with the following issues:
Reasoning was gone and acting completely out of character
running door to door trying to escape the house
deer in headlights look
hiding from us and not responding to her name
attempted to jump out of a window (my husband and I had to guard the doors and windows)
Calling the police, where Ryleigh told the officer "I don't know what is happening".
defiant behavior when she is usually kind and calm
Regression to a 5 year old mental state
Not talking like herself and having irrational conversations.
Fainting/Seizure type episodes where she would go into a rage
Had to call 911 - officer instructed us to go to Tuckers hospital because of her blood pressure 170/110 and tachycardia.
When we arrived to the hospital via ambulance we were placed in a room towards the psych end of the unit
AGAIN - she was not truly evaluated. Best advice was “take her home and put a baseball hat on her, tape it to her head and let her bang it out.” Well – that sold the deal for me. We would NOT be visiting Bon Secours anymore.
Needless to say we were discharged without any workup. Safety plan #3 provided.
February 18, 2022
Early afternoon, Ryleigh had another seizure/Fainting episode.
She was still exhibiting abnormal behavior.
Lady on-call from Crest came out and worked with Ryleigh for over an hour to get her out of it. They wrote notes through the door. Ryleigh appeared to calm down. Crisis worker left.
We headed to VCU Medical center. This was our first time going outside of the other health system.
VCU didn’t show any desire to investigate into what caused the sudden behavior changes she had been experiencing.
VCU DID first complete blood work, which was a first of the ED’s that completed this step.
Results from 2/19/22 are here: Clearly it shows that her blood work has issues. The issues were never discussed. I was actually told her blood work was completely normal.
We were discharged home with CREST to follow-up with us.
Within 2 hours of getting home Ryleigh had yet another seizure/fainting episode. We headed straight back to VCU for evaluation.
February 22, 2022
Back to VCU after being sent home earlier in the day.
Ryleigh had another seizure/fainting episode within in hours of being home.
Reason for visit is listed as unspecified delirium and drug induced hallucinations.
Ryleigh does NOT do drugs.
VCU made the decision to put her in the IP Children’s Psych unit referred to as VTCC (Virginia Treatment center for children). Ryleigh will stay at VTCC for 3.5 weeks.
They ignore that I keep saying it all started after the Vaccine, but they told me that wasn't possible.
Psych Eval tried to pin her behavior on prior trauma and notify CPS. Reasons for CPS being called.
1 – Dad drove too fast in the car and scared her.
2 – Selina, her six year old sister hit her and left a bruise.
3 – about 2 years ago mom popped her in the mouth.
February 25, 2022
Dr. Ameldine from VTCC asks Ryleigh how old she is? Ryleigh responds with a shrug and says she doesn’t know.
Dr. Ameldine says: Ryleigh this paper says you’re 9 (she’s 8), is that true? Ryleigh responded with “if that’s what it says then that’s how old I am”. Ryleigh is not the type of child that wouldn’t know how old she is. She’s very proud of her age and herself.
Dr. Ameldine came to me that day and said "you’re right something isn’t right. I’m sending her back to VCU for further Neuro workup as this could possibly be a PANDAS case."
Ryleigh returned to VCU that Friday night and was admitted to the pediatric floor.
February 26, 2022
Ryleigh’s neurology team enters room and asked her basic questions like What’s your name? Who’s the President? What day is it? What year is it? What season is it?
Ryleigh couldn’t answer any of those questions.
Ryleigh was to undergo an MRI, EEG and Lumbar Puncture this morning.
They put her under anesthesia again for MRI w/wo contrast and LP.
Ryleigh woke up with emergent delirium, and in a rage, and was given medications to put her back to sleep.
EEG ran for 30 minutes and values were normal
MRI was read and it was unremarkable
LP preliminary was clear with no problems.
February 28th, 2022
Ryleigh returned to VTCC where she further underwent psych treatment.
March 2nd, 2022
Ryleigh had an episode at VTCC and it took them over 1 hour for her to come out of it.
She was compared to a primal animal and the therapist said that she was a puzzle
They suggested it could be due to bullying from school (no evidence I can find of that).
Later that evening, Dr. Wosniak diagnosed Ryleigh with DMDD. According to the course curriculum DMDD can’t be diagnosed unless a patient has that mood disorder for 12 months or more.
Ryleigh was started on Tenex that day.
They continued to keep Ryleigh until March 11, 2022
CPS cleared us. CPS was also perplexed that CPS had been called.
March 11th, 2022
Ryleigh was discharged with Vitamin D3 and Tenex.
March 16th, 2022
Ryleigh began to feel bugs on her skin and began taking multiple showers to try to get them off.
Ryleigh mentioned that the voices were back.
March 18th, 2022
Ryleigh had a counselor from the attachment and trauma institute come over and ask her how she was doing? Ryleigh responded with the comment about the bugs on her skin and the hallucinations. Counselor advised that something else is going on in her opinion because she too has seen Ryleigh in a normal state and acknowledges that this could potentially be from the vaccine or covid virus itself. It’s not normal to have memory loss.
March 18th, 2022
VTCC stated “Ryleigh should be able to handle these episodes on her own. There is nothing else I can do for her”. – Dr. Jones at VTCC.
Debated going back to VCU or seeking an opinion from another health system such as UVA.
Ryleigh admitted back to VCU and within 6 hours was transferred to VTCC again. This time, the PA said I believe she may have ODD – that’s the 2nd diagnosis in 3 weeks.
March 22nd, 2022
Ryleigh discharged, new medication Lexapro onboarded along with Tenex.
Ryleigh states that voices are gone and no more mention of bugs.
March 23rd, 2022
Ryleigh has worst episode yet. Ryleigh started to bang her head on floor and her nose started to bleed. She rubbed blood all over her face. Head banging and legs thrashing on the floor. Ryleigh is unresponsive to counselor and me. Counselor suggested to call police to deescalate.
The officer was unable to assist. He said that she was mentally not able to communicate.
Together, me, the officer, and Ryan got Ryleigh into the vehicle to take her back to the hospital. The main difference this time is that Ryleigh is now screaming in pain that she can’t feel her legs.
At VCU, Ryleigh was unable to walk and had to use a wheel chair from that point forward until today.
She describes her legs as numb and tingling.
Ryleigh developed severe neck and back pain from the incident.
VCU wanted to put her in Psych yet again. This is the first time that conversion disorder was mentioned.
March 24th, 2022 PM
I take Ryleigh to John Hopkins for further workup.
They pull her record from VCU and see FND (Functional Neurological Disorder which is a conversion disorder) written in her chart. They state there is nothing else for them to do.
They agreed to add some additional neuro and genetic testing.
All came back normal.
Lexapro and Tenex Stopped
March 25th, 2022
We sit in ED waiting for results
Another inpatient psych unit treatment was advised - I declined.
Neurology changes Ryleigh’s medicine from Tenex to Clonidine at night time.
March 26th, 2022
Ryleigh was laying in bed at John Hopkins and started to go into an episode of hitting head on bed and flailing feet on bed.
2 doctors, several nurses and security team entered the room to monitor the situation. She began to become irate. She looked me in my face for 15 minutes asking “Where is my mommy? Where is my Mommy? Where is my Mommy?” I responded so many times, I finally gave up and said “your mom will be back soon”.
The Security team stated to me “we can’t deescalate someone who isn’t mentally present”.
Ryleigh’s incident alarmed the staff. I heard some say they’ve never seen anything like it and again she was compared to a primal animal.
They gave Ryleigh Zyprexa to calm her down.
Ryleigh is still unable to walk.
March 29th, 2022
I declined IP Psych Unit floor 12 and they discharged us.
Results from additional tests were normal.
Sent home without any meds to continue
PT would not see her even though she was completely numb from waist down.
I had to help Ryleigh walk and hold her up to get her to the hotel room.
March 29th, 2022 evening
I find Shepperd Pratt, a Psych Hospital after doing research.
She and I drive there and once were there we get to speak to a psychologist
He believes its emotional in nature, but it could also be pandas.
He would not admit her to the FND floor because compared to other FND patients she’s “Normal”.
Sheppards Pratt (a Psych Hospital) sent her home!
March 30th, 2022
Ryleigh gets wheelchair.
Ryleigh comes back to room and has an episode/faint.
Ambulance called to assist. They couldn’t get her out of the episode either. By the time we were at the hospital she’s out of the episode and asks me, “why everytime I wake up from fainting am I in the hospital”?
Ryleigh is visibly and verbally getting frustrated and irritated with doctors.
Ryleigh complains of chest pain. EKG ran and of course normal.
She was tachycardic on the way to the hospital. When arrived at hospital the Attending Dr. didn’t acknowledge episode instead asked why we were there.
The FND diagnosis is automatic shut down for further workup, so we were discharged.
March 31, 2022
Ryleigh and I were returning home. We stopped for dinner at Texas Roadhouse. Ryleigh began to have a stomach ache and didn’t eat her dinner. Complained that she needed to leave. She got to truck and fell out on the floor. Again, flailing and constant movement of limbs.
She connected herself to the dashboard of the car. This went on for 1.5 hours before I was able to onboard some Benadryl.
The Benadryl eased the issue.
April 2nd, 2022
Ryleigh complained of lightheadedness, chest pain, burning like fire.
April 3rd, 2022
Ryleigh is tired. Doesn’t have episode, but is unusually less active.
Notice tremors in hand again. It happens from time to time since feb 15th, 2022 to present.
April 4th, 2022
Ryleigh had a good day but then had an episode later in the evening.
Once Ryleigh came out of episode, she began screaming and crying in pain about a tingling sound or hurt coming from her ear.
April 5, 2022
Ryleigh was seen by Dr. David Younger.
EMG and NCS of the legs and left arm showed chronic distal autoimmune demyelinating motor and sensory polyneuropathy.
In a letter from the doctor, Dr. Younger states "The findings were consistent with distal chronic acquired demyelinating polyneuropathy, small fiber sensory polyneuropathy, orthostatic intolerance, and CNS neuropsychiatric disturbances in the setting of prior anesthesia and COVID Pfizer vaccination."
Dr Young recommended 1. Screening metabolic, autoimmune, genetic and infection serology. and 2. Consideration of immune modulatory (Ig) therapy (ie IVIG).
Here is a link with information on the diagnosis: https://www.cedars-sinai.org/health-library/diseases-and-conditions/c/chronic-inflammatory-demyelinating-polyradiculoneuropathy.html
Q: What is her life like now, after getting the vaccine?
Ryleigh has lost a lot of her memory. She is no longer walking, and she can't feel when she has to urinate. She has episodes/fainting spells at least 1 time per day. Sometimes up to 3 episodes per day.
Q: Was Ryleigh's reaction reported, and what was the response?
VAERS/CDC - No Substantial response. They did call me and get information about the hospitals that she's been seen at, but that was it.
Q: Is there anything that has helped, and have her symptoms improved?
Not yet. 04/06/22: Ryleigh received a call from the PCP today. The Neurologist that diagnosed her has reached out to our insurance to get Ryleigh approved for IVig Therapy at home. We have an appt on Friday with the PCP to go over additional details. Please continue to pray that the process moves quickly and Ryleigh will begin treatment for this CIPD! Ryleigh is worth fighting for and I ask that you please consider sharing our story with others so that her story is told to other parents that are considering giving their child this vaccine! We are not anti-vaxers, but beware it does come with risks.
Q: Has she had Covid before? What was her experience if so?
Yes, we all had Omicron and it was mild.
Q: What do you wish others knew?
I would like to advocate for other children to encourage their parents to think twice before giving this to a child (or anyone for that matter).
I have been asking for weeks and weeks to get the sit SED rate ran I was completely ignored and shunned by the medical system. Please get the story out there so that people can see that my daughter has been poorly treated and misdiagnosed by the medical health systems thank you.
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