Change Hospital Policy on Lyme!
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We need your help to ensure that the Children's Hospital of Eastern Ontario will change their current policy on Lyme Disease.
Right now, if you are a child suffering from Chronic/Late/Persistent Lyme beyond having an acute tick bite, you need a positive Canadian Lyme test to be diagnosed with Lyme within the hospital, and you will be referred to an Infectious Disease specialist within the hospital who will focus their decision to diagnose strictly on serological testing. Not receiving an official hospital diagnosis can lead to the refusal of care, misdiagnosis, and not receiving critical treatment, and can result in a life of suffering, paralysis, loss of mobility, devastating emotional consequences, the inability to speak, and death. Not to mention the current lack of Lyme and Co-infection training is causing an inconsistent standard of care within the hospital with damaging consequences.
This is completely unacceptable given the current accuracy of the Canadian Lyme testing that is available. Until better testing is made available within Canada, CHEO and all hospitals need to ensure that diagnosing Chronic/Late/Persistent Lyme is not based solely on serology, but instead on a CLINICAL diagnosis.
In Nicholas' case he was sero-negative on the Canadian Lyme tests, but he had 1) a tick bite, 2) an EM rash, 3) risk of exposure, 4) lives in an endemic area, 5) had positive US serology, 6) all the Lyme symptoms, 7) was diagnosed outside the hospital by 3 medical professionals, and 8) was being treated successfully for Lyme and Co-infections, and still CHEO's Infectious Disease specialist refused to accept his Lyme diagnosis. You can understand our utter frustration after an expert at our local children's hospital ignored all 8 clear indicators that should point to an easy diagnosis, all because they refused to look beyond the negative Canadian serology that their policy requires they look to. This narrow focus is irresponsible, reckless, and can have devastating consequences for a sick child and is a violation of the child’s rights to health.
The frustration continues as they refused to accept the existence of Co-infections in our area.
Please read the following study explaining how Co-infections like Babesia are now endemic in our area: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0193837
They believed that given our son's treatment protocol, that he should be all better by now if he had Lyme - arguing that the antibiotics are smaller than the Lyme bacteria, and should have rid our son of Lyme if he had it.
When I expressed that Lyme can change physiologically in the presence of antibiotics, and therefore longer treatment is sometimes necessary, I got nowhere.
Please see a video of Lyme Spirochetes forming a cyst with biofilm to evade antibiotics: https://www.youtube.com/watch?v=F9B60gsCg4w
They believed that our son should be better after the 21 day course of antibiotics if he had Lyme Disease, they believe that treating beyond that course would pose a risk to our son. We disagree, and believe that a life of suffering, paralysis, loss of mobility, devastating emotional consequences, the inability to speak, and death are far worse than the consequences of treating with antibiotics for a longer-term than 21 days. We believe that we have the right to assume the risk of treatment for our son, especially because he was responding so well to treatment, and there was no evidence that the medications he was on were causing damage. We had taken special care to support our son's body while on treatment, taking all preventative and supportive measures, and had responsibly been testing for any possible side effects. We believe that because the hospital had no other humane solutions for the care of our son, they had no right to try to interfere with our choice of treatment for him.
If our son had cancer, we would be allowed to assume the risk of treatment, chemotherapy would completely wipe out his immune system - why do they believe we are not allowed to assume the risks of treatment in the case of Chronic/Late/Persistent Lyme Disease???
Long-term antibiotics are used for acne, in some cases 6 months of antibiotics are prescribed, why not in the case of Chronic/Late/Persistent Lyme Disease if they are proving to be effective?
We are not saying that antibiotics are the answer for everyone with Chronic/Late/Persistent Lyme Disease - but in the case of our son, they are the only solution that proved to be effective, and until better treatments become available, how can the hospital deny our son the only treatment that is helping him to get better? We are saying that patients and their families ought to have the right to be included in deciding what treatment is best for each individual, and that other medical professionals should obtain higher levels of ethical practices in being respectful of those decisions.
In our son’s case, Nicholas was presenting with Neuroborreliosis (Lyme of the brain and that has entered the CNS) - because of this not treating our son would cause irreparable and devastating, possibly life threatening consequences. In his case we have extensively and thoroughly documented all of his symptoms and his responsiveness to treatment every step of the way. We also thanks to his amazing physician provided supportive care to our son as far as diet, supplements, and tailored his entire treatment plan to him based on his needs and his response. It is devastating that having been to blessed to receive such impeccable care for our son outside of the hospital that a doctor within the hospital who doesn’t know us, who has not cared for our son over the last 6 months, who has never met or spoken to our physician would take it upon themselves to presume they know what is best in a situation they know little about. If they had genuine concerns they most certainly could have reached out to our family or physician to discuss those concerns, but they didn’t even have the decency to follow typical hospital protocol and inform us they were filing complaints - they completely blind-sided us and our doctor.
In the complaint to CAS they expressed their concerns over the treatment plan for our son and the risk of harm it could cause. Pardon me, but a disagreement in a medical treatment is not reason enough to call CAS when there was no evidence of abuse or neglect taking place; to the contrary this doctor had access to a report indicated the opposite. CAS and the College should not be “tools” to be used to settle medical disagreements, especially in a highly medically and politically controversial setting where there are clear divides in the treatment of Chronic/Late/Persistent Lyme disease. In fact, the College upholds ethical practices which protect physicians and patients to have the right to another opinion and ask physicians to be respectful of those rights and the to be respectful of other treatment plans imposed by other physicians.
Please read the following study about longer terms of antibiotics being beneficial for some: https://academic.oup.com/cid/article/45/2/149/420106
Please read the following guidelines that explain why treatment should be patient-focused, and why sometimes longer treatment is necessary: https://www.ilads.org/patient-care/ilads-treatment-guidelines/
Ilads guidelines are currently the only guidelines that are listed on the National Guidelines Clearinghouse: https://www.lymedisease.org/idsa-guidelines-removed-ngc/
Clearly the experts at our local Children's Hospital lack the knowledge and have not done their research to be sufficiently equipped to formulate a proper diagnosis and to ultimately treat a child with Chronic/Late/Persistent Lyme.
The idea that Lyme is a singular infection is simplistic, and negligent.
Please read the following study explaining the presence of multiple microbes in cases of Lyme: https://www.nature.com/articles/s41598-018-34393-9
While we understand that the acceptance of Chronic/Late/Persistent Lyme Disease is a highly medical and political controversial subject, children like Nicholas and his doctor should not be made to suffer whilst the medical professionals, our government, and the governing bodies (AMMI, CDC, IDSA, the College of Physicians and Surgeons, and our doctors,) decide on a general consensus on diagnosing, and on appropriate treatment guidelines for cases of Chronic/Late/Persistent Lyme Disease.
The Federal Government itself states that more research for Chronic/Late/Persistent Lyme is needed, and they endorse the ILADS guidelines, posting them directly to their government site directing Canadians to them for more information.
A hospital should not be allowed to try to thwart a treatment plan of a patient who is following a Federally endorsed set of guidelines. The only recognized guidelines available on the NGC.
We as parents expect that our son will receive care from our local children's hospital, that we will be supported during this terrible disease process, and most especially we expect that we will not and our physician will not be punished for choosing to go against their recommendation to let our son suffer, and to care for our son. No parents and no doctor should ever be punished for choosing to care for a child who suffers from Lyme Disease.
In Nicholas' case, 1 doctor at CHEO refused care because of his condition, 1 doctor accepted his diagnosis but months after seeing our son filed complaints with CAS on our family and the College of Physicians and Surgeons on our doctor, and their ID specialist refused to accept Nicholas' diagnosis and told us to cease all treatment immediately and let him suffer. The utter lack of consistency within the hospital, the refusal of care, the lack of humane treatment and support, and most especially the attacks on our family and our physician are completely unacceptable. We now wait patiently while the hospital undergoes an internal review of Nicholas' care/lack thereof within the hospital, and our doctor is still under investigation by the College; the doctor who has helped our son to recover is being punished.
On the occasion that the hospital refused care, our son presented to the emergency department having acute and severe chest pain, abdominal pain, and new neurological ticks. We felt that it was critical to have our son assessed to ensure he was okay. They refused to even take his blood.
Doctor: “We can’t take your son’s blood, because legally if we did and the results were abnormal (which they likely would be) - we would be by law required to follow-up with your son.”
Me: “Wouldn’t you want to follow-up with him, he’s very sick, and needs to be followed-up with?”
Doctor: “If I followed up with him, I wouldn’t know what to do. Errors could be made, I could be liable, and I could lose my medical license.”
Me: “If you aren’t comfortable what about the other doctor that’s on call? What is their name. Or that doctor I saw on the hall I knew from our last visit, what about them?”
Doctor: “No. I’m sorry we can’t.”
Further to that when I asked for a referral to neurology I was told “if a neurologist saw your son’s chart, they would take one look at it, throw it in a pile and leave it there.”
On the occasion the hospital accepting our son’s diagnosis, the doctor did seem genuinely concerned. They told me that they would love to see what we are doing because they see kids with Lyme all the time and would like to learn anything they can to help other kids. When I asked if they saw kids with Lyme all the time, then what would they recommend - they replied these they’d never seen a case as advanced as our son’s. It was made clear that our son’s situation was beyond his scope. I asked if they could be our contact in the hospital and was told no that emergency doctors don’t work that way and follow-up wouldn’t be possible. This doctor saw my son in August for about 20 minutes in the emergency room, he then saw him for 5 seconds in the hallway in September where he then reported to the Health Unit that Nicholas had Lyme. Then the week of October the 8th he reported our family to Children’s Services and our doctor to the College of Physicians and Surgeons. He would have just had access to a 6-page report from the ID specialist saying our son was: well-nourished, clinically stable, with no signs of elevated liver levels, normal EKG, no signs of C-Difficile, and that mom had reported he had been making progress.
It was bad enough that the hospital didn’t support us during a time of crisis, but to further go on the attack put a devastating toll on our family and impacted our lives and our physician’s life deeply. There is no possible positive outcome to having made these 2 complaints. Only harm was caused to our son, his family, and his doctor in doing so.
On the occasion of our ID appointment, it was made abundantly clear that without the Canadian positive serology, Lyme was not a possible diagnosis. It was also made clear that so many other diseases could be at play; specifically EBV and mono, and the ID soecialist wanted to run more tests. All came back normal except for Bartonella, which was also something I suggested might be a possibility during our appointment. Nicholas’ titers were low at that time. But it certainly confirmed the presence of tick borne pathogens in our son’s blood. Especially not having had any cat scratches that we could recall, but being able to recall clearly a tick bite and EM rash. The ID doctor continuously made the assumption that Nicholas wasn’t comfortable speaking to them and that was associated with stress from the whole situation - I tried to advocate that it wasn’t stress that we had seen a shift in our son that was unlike him, but they could not be convinced. Ultimately they agreed that something was wrong, but they didn’t know what, and their recommendations were to cease all treatments immediately, and to refer Nicholas to the Psycholgy and Physiotherapy departments, and a possible slim prospect of a pain management clinic. When I told the ID specialist that if we stopped his medication that he would suffer (we had documented evidence proving that when we tried to pull his medications it rendered him cripple, unable to walk, and in devastating pain,) they told me to plan to let him suffer. I asked if it was their child could they let his suffer. They said it would be hard, but yes.
In all of this, it was the hospital and their actions that caused our son and our family far more emotional distress than the disease itself, and actual real damages as well having to go to the USA for any further treatments since our doctor in Canada could no longer assist us while under investigation by the College.
We asked the hospital, and the doctors involved to 1) withdraw their complaints to CAS and to the College, 2) for apologies to Nicholas, our family, and his physician, 3) that they open up their policy to be inclusive of children like Nicholas who are sero-negative in Canada but who otherwise clearly have Lyme Disease, and 4) that the hospital send their physicians for ILADS training so that they can better support children like Nicholas in the future.
To-date, we wait patiently with no clear indication that the hospital will make any change, or take any actions to address the clear violations of our son's rights to health, our rights as his parents to seek health for our son, and our physician's rights to care for a sick child.
Today, Nicholas is symptom-free! We as a family and our physicians outside of the hospital have done what the hospital ought to have, and that is to treat Nicholas for his medical condition, because children with Lyme like Nicholas don't have to be destined to live in wheelchairs, to suffer in needless pain and agony each day, Lyme is treatable! Because we persisted, albeit what our hospital told us to do, our son is healthy, and well. There is life after Lyme.
We are hopeful that our local Children's Hospital will step-up and apologize for the damage that they have caused our son, our family, and our physician. We hope that they will retract their complaint to the College of Physicians and Surgeons on the doctor who has saved our son's life, and whom we will be eternally grateful for. We hope that they will review and make the critical changes to their Lyme policy that are crucial to be able to be more inclusive of children who are in desperate need of care who do not meet the currently rigid criteria. We hope that they will send their physicians and experts for ILADS training so that they can adequately diagnose and humanely treat the many children in our now endemic area who will come to suffer as our son has if they don't. Ultimately, we hope that they will choose to do what is right, what is humane, and turn our son's terribly injust experience with their hospital into a valuable learning opportunity.
We thank everyone who has supported our family during the worst time of our lives, we encourage all to sign our petition to help change hospital policy on Lyme and bring awareness to the critical need to change the current policy to be more inclusive in diagnosing and treating individuals based on a clinical diagnosis, and not solely relying on flawed testing, because to solely rely on inadequate serological testing is a clear violation of child and human rights.
A glimpse at our son's Lyme Journey: https://www.dropbox.com/s/da6j4fai7oaeobb/Video%202018-11-13%2C%201%2005%2048%20AM.mov?dl=0
Thank you <3
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