If you have found this page as a Doctor, patient or parent then please consider this as a source of information should your patient, or child experiencing an unexplained short lived repeated viral illness with (some or all of) the following symptoms: This is a thorough guide to Chronic EV71, to include a selection of publications, associations and treatments.
Warning symptoms include:-
Noticeable rapid jerking of foetus during gestation on hearing base noises such as lawnmowers/V-engine cars or motorbikes, cinema surround sounds. Continuation of these movements during infancy too
Initially appearing as an untreatable eye infection, progressing to eye ambulation. Short duration and child seems unaffected, occasional compensatory head tilting
Red cheeks and pink eye
(Transient) short lived low grade fevers, sweaty head (hair stands up), kicking covers off at night. Fever may only last 2 hours. Recovered by the time a medical consultation is met
Back rash, mouth and hand rashes, prone to nappy rash (when using perfumed/infused wipes, but not water only wipes).
Hand Foot Mouth disease. Positive Rhino/Entero virus test
Persistent coughing, in particular during the early hours (3-5am)
Frequent Tonsillitis, Croup, Stridor, vomiting [blood], seizures
Metallic/Zinc smell on breath prior to croup/cough or during seizure
Wheeze, cough and rash worsened by high sugar intake, including baby formula. Stress related (elevated cellular glucose – Hospital testing only monitors circulatory glucose)
Family history (to include parents/grandparents) of Type 1 Diabetes, Alopecia, acanthosis nigricans (dark skin patches), hypothyroid/Hashimoto’s, Chronic Fatigue. Rapid eyesight deterioration, uncharacteristic and irrational mood swings during pregnancy. Persistent diarrhea. Unexplained short lived lethargy & depression, reoccurring testicle or hip pain. Pre and post natal depression. Late/post term delivery with C-Section required
Adverse reaction to MMR vaccination
Most tests are returned negative (They are only designed to identify acute variations of a virus, not the chronic – full explanation of RT-PCR primers within diary)
If your child has been diagnosed with autoimmune encephalitis, FIRES or NORSE and you have been told the cause is unknown, this is the website for you
The full explanation, relationship between the virus and sugar, treatment with Anakinra, and medical publications are within this web diary. A shortened version of each topic can be read at TikTok or Instagram at rememberingalina.us, to include the HLA misconceptions of genetic inheritance, and the proposal of molecular mimicry as a valid explanation
The scientific medical literature fragments this singular disease process into a dozen disconnected diagnoses based entirely on individual physician bias and publication conventions, and so finding a root cause of the illness is near to impossible. Academic journals primarily publish “success stories” where standard, aggressive 2nd and 3rd line autoimmune treatments, such as plasma exchange or interleukin blockade successfully mute the exponential immune response. Consequently, broad classifications like “autoimmune encephalitis” and “anti-GAD encephalitis” (FIRES, PERM etc.) are treated as distinct, idiopathic conditions and once the patient is treated, the Doctor rarely traces back through the family or personal history to look at early and unusual prodromal symptoms
In reality, these conditions represent the exact same underlying disease: a chronic, inherited enterovirus variant (i.e. c-EV71) that establishes permanent persistence within sites of immune privilege or organs of enterovirus persistence (eye, heart tissue, testicles, pregnancy, pancreas, thyroid, CNS…). The specific clinical presentation varies per person, depending entirely on where the virus ‘nests’, the individual’s inherited HLA affinity for viral antigens, the age of viral acquisition, and metabolic triggers like diet and stress.
In adults, this manifests as a “sand-timer illness”, a slow-burning short lived disease characterized by small, progressive, and accumulative destructive phases, with slow retrograde migration along the CNS, mitochondrial dysfunction and accumulation at the Neuron or nerve terminals
This journal is also a true diarised story of how a Doctor can evade criminal investigation from being the cause of death of a child by simply documenting a different illness and symptoms to the one presented. It shows how departmental colleagues will deliberately cause suffering and death of a child, and how a Hospital will assist in developing a false diagnosis to support the original dishonest and incapable Doctor. The systems in place to protect patients and register complaints have no effect as they will only allow representation of events from the Hospital notes (Civil law), which can easily be shown to be false and deliberately fabricated and incomplete.
In 2018 my 22 month old daughter Alina died from a very treatable illness. She had an extensive history of 40 GPs and A&E visits all recognising the same viral illness [chronic], with one GP advising that this could easily develop into seizures. Sadly, this [seizure] happened at 18 months old, and was admitted into the care of Dr Hugo Sampaio at Sydney Children’s Hospital
Dr Sampaio chose to ignore and withhold [from the Hospital Notes] a very extensive medical history of a repeating virus, as well as the clinical symptoms, and developed a treatment plan and medications for a genetic cause instead, these had no effect. The parents questioned these choices and became suspicious of his activity and responses. The father started to record the meetings and video the progress in disbelief that despite repeating the same history, effective treatments and symptoms the observations were not only being gaslighted, but not making it into the share Hospital notes. Within 6 weeks Alina suffered significant brain damage from neglect.
The parents dismissed Dr Sampaio and requested a departmental colleague to take over. After re-visiting the [undocumented] medical history, it was a agreed this was indeed in line with the treatable condition of viral/autoimmune encephalitis. An autoimmune/viral drug was trialled and within the week it showed significant and notable improvement in stopping the seizures (seen on the EEGs, ICU notes, Nurses notes, and videos taken). However, this also demonstrated that Dr Sampaio lacked communication, documentation and ability, as well as failing to uphold the Medical code of practice. Against the parents wishes, the departmental Neurologists claimed it made her condition worse and withheld this effective medication, Alina’s condition returned to heavy seizures. The parents were forced to request palliative care due to their forced suffering.
Regardless that every test, including the full genome [from the US] had returned no suggestion of a genetic illness, the Hospital fabricated one, claiming this was the cause, and of course this was in conveniently in agreement with Dr Sampaio initial pursuit
At the review by the HCCC and Medical Board the father submitted [a brief overview of] the medical history, email communications with Dr Sampaio, images, and the audio and video of events during the 5 months stay. The HCCC rejected their use without reason.
Dr Sampaio submitted untruthful statements (Anakinra showed “no apparent benefit”), easily disproved with the audio and video evidence
The Medical Board found in favour of Dr Sampaio.
The HCCC did not refer the complaints to the NSW Police or the New South Wales Office of the Director of Public Prosecutions even though the HCCC’s governing legislation expressly permitted it to do so
The Medial Board did not exercise its statutory powers to protect the public under the Medical Practice Act 1992 (NSW)
In the same year, 2018 an identical illness with the exact symptoms and positive returned tests that Dr Sampaio had ignored was treated with a similar autoimmune/viral drug to Alina. The patient made a full recovery as the Doctor recognised this quickly as the treatable condition of Autoimmune/viral encephalitis.
In 2022 the Norse/FIRES medical committee validated the exact same treatment program the parents had developed from observation, research and intuition; accelerated use of the ketogenic diet (to 4:1), the use of Anakinra (Plasmaphereses and Rituximab) for successful treatment of this same clinical presentation
If you find yourself in a similar situation the following information within this website will be of great help. The link between Chronic Enteroviruses (in this case EV71) , HFMD, the Autoimmune disease T1 Diabetes, Vaccine injury, glucose elevation levels and the Ketogenic diet, plus the use of appropriate Autoimmune drugs, like Anakinra. Also included in this diary is an explanation or examples of how the standard testing equipment used by NSW Pathology to detect viruses and autoimmune diseases fail
Incidentally, Alina had spent a total of 104 days in ICU. The parents were told the cost was an approximate $5000/day. The overall cost to include an overseas genome report and multiple visits to several other departments and medications likely doubled this
The Audio files included in this diary have been clipped to reduce fatigue and improve clarity, since the meetings could be an hour or two long. Every effort has been made to ensure the context is correct and relevant, however if you feel this is not so, please send a request for the unaltered versions
Chronic EV71 enterovirus Autoimmune Encephalitis FIRES NORSE Misdiagnosis Sydney Children’s Hospital Dr Hugo Sampaio ketogenic diet myoclonic jerks chronic virus Type 1 diabetes Hashimoto’s alopecia