RCPCH conference 2019 abstract: When symptoms dictate a young person’s life..., Gamper et al.

Trish

Trish

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When symptoms dictate a young person’s life – and the importance of building trust and team work in rehabilitation of patients with complex conditions

Abstract
Aim To illustrate how a multidisciplinary approach to young people with complex conditions can significantly improve function and quality of life.

Method Case report of a young woman, whose adolescence was spent largely bed bound due to several coexisting medical conditions including functional paralysis. Our patient was a generally unwell child. After the HPV vaccination, symptoms of fainting, weakness, pain, rashes and headaches deteriorated, leading to reduced mobility. She never fully recovered. Numerous health professionals were involved in diagnoses and management. The diagnoses established over several years included chronic fatigue syndrome, postural orthostatic tachycardia syndrome, hypermobility-type Ehler-Danlos-syndrome, mast cell disorder and skin reactions to numerous foods and medications. Aged 16, she developed lower limb paralysis after a syncopal episode which left her completely bed bound. Meanwhile functional abdominal symptoms and reduced oral intake led to severe malnutrition (BMI 14 kg/m2) requiring parenteral nutrition.

After five years, local referral to safeguarding services for suspected fabricated and induced illness resulted in a traumatic legal dispute, and the medical care was transferred to our team. Treatment objectives were identified: establishing a trusting relationship, introducing hope of recovery, reducing numbers of professionals involved, controlling symptoms, rationalising medications and rehabilitation of mobility and cognition.

Pain control was challenging: occipital nerve blocks and experimental therapies, such as low dose naltrexone and ketamine infusions, were used to alleviate pain and facilitate rehabilitation. Mast cell stabilisers and antihistamines were added for symptom control. Symptoms and possible aetiologies were gently challenged whilst acknowledging the traumatic impact of previous disbelieving professionals. After initial reluctance, the role of clinical psychology and psychiatry to support and enable recovery was accepted. Indeed, whilst physically improving, overt depression with psychotic symptoms necessitated intensive involvement.

Results After one year of rehabilitation, she has remarkably improved, progressing from lying to sitting, then standing and walking with help. She is weaning TPN, and most importantly, she is more confident and hopeful for the future.

Conclusion Complex patients should be managed by a multidisciplinary team. Case-management is needed to contain symptoms and avoid overmedication. A trust-based relationship is therapeutic in itself, and symptom control might require experimental therapies.
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For more on the conference, see this thread:
https://www.s4me.info/threads/me-cf...-health-conference-may-2019.9555/#post-169063
 
Trish said:
When symptoms dictate a young person’s life – and the importance of building trust and team work in rehabilitation of patients with complex conditions



For more on the conference, see this thread:
https://www.s4me.info/threads/me-cf...-health-conference-may-2019.9555/#post-169063
Click to expand...
So basically: medical care is useful for chronic disease, but if you add psychological support to the mix you can imply that it's what helped. Sure, whatever. Thank you, tiger-repelling rock, for your role in there not being any tigers around.

A trust-based relationship is not therapeutic, it is a necessary condition for adequate medical care and it's a two-way relationship. Again with mixing correlation and causation. Notable that in complex chronic diseases, the trust is initially broken by systemic discrimination denying a medical problem is present at all, but somehow that does not find its way into the psychosomatic ideology, which rejects the idea that it could possibly be harmful in any way.

Also of note: being discriminated, even traumatized, out of adequate medical care significantly worsened her situation. How about skipping that initial step? Ah, no, unfortunately, not with the MUS paradigm, which specifically advises against this.

Getting close to the point while still missing it entirely.
 
I'm sure symptoms don't dictate her life anymore since she can now "walk with help". She is also "more hopeful and confident" about the future after a bunch of psychiatrists said "you will totally recover trust us!" so basically she is cured
 
Amw66 said:
Because these are not acknowledged, particularly with HPV, therefore it must be something else.
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I agree. There is no good reason to think that HPV caused a neuroimmune reaction. Her problems have to be assumed to have some other origin.

But FII sounds like the wrong analysis.

My worry with these cases is that the child is caught between physicians giving what are probably unhelpful labels like EDS and MCAS and psychiatrists who do not understand what they are doing. The authors may have ended up providing useful support during a time when the patient recovered but nobody can tell. The conclusion is that what is needed is a multidisciplinary team but the formal evidence for that is zero, just as it is for the other approaches.
 
The abstract reads like a cherry-picked narrative. I don't trust this narrative either, unless the individual in question agreed it was true.

The likely reality is there was a lot of medical malpractice and the patient is still severely ill.

Terry Segall, one of the authors also wrote this in a recent review. "The Lightning Process has been shown to be effective when added to medical care."

https://www.ncbi.nlm.nih.gov/pubmed/31045885

Yes, a pseudoscientific thereapy tested in a single small unblinded study utilising subjective, rather than objective outcome measures is somehow considered sufficient evidence of effectiveness.
 
Merged thread

https://bmjpaedsopen.bmj.com/content/bmjpo/3/Suppl_1/A32.1.full.pdf

The diagnoses established over several yearsincluded chronic fatigue syndrome, postural orthostatic tachy-cardia syndrome, hypermobility-type Ehler-Danlos-syndrome,mast cell disorder and skin reactions to numerous foods andmedications.
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WHEN SYMPTOMS DICTATE A YOUNG PERSONS’LIFE–AND THE IMPORTANCE OF BUILDING TRUST AND TEAMWORK IN REHABILITATION OF PATIENTS WITH COMPLEX CONDITIONS

1,2LJ Gamper*,1J Simpson,1,3SMoeda,1TY Segal.
1Children and Young People’sSpecialistAdolescent Services, University College Hospital, London, UK;2Department of Paediatricsand Adolescent Medicine, University Children’s Hospital, Zurich, Switzerland;3Departmentof Paediatrics, Hospital Beatriz Ângelo, Loures, Portugal
 
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It's a case report of a single patient.

After five years, local referral to safeguarding services for suspected fabricated and induced illness resulted in a traumatic legal dispute, and the medical care was transferred to our team.
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So poor, and possibly harmful, care for the first five years.

Results After one year of rehabilitation, she has remarkably improved, progressing from lying to sitting, then standing and walking with help. She is weaning TPN, and most importantly, she is more confident and hopeful for the future.
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Sure, never mind actually being able to do stuff, or health actually improving, the real metric is confidence and hopefulness...
 
Highlighting and paragraph breaks mine.
Pain control was challenging occipital nerve blocks and experimental therapies, such as low dose naltrexone and ketamineinfusions, were used to alleviate pain and facilitate rehabilitation. Mast cell stabilisers and antihistamines were added for symptom control.
Click to expand...

Symptoms and possible aetiologies were gently challenged whilst acknowledging the traumatic impact of previous disbelieving professionals.

After initial reluctance, the role of clinical psychology and psychiatry to support and enable recovery was accepted. Indeed, whilst physically improving, overt depression with psychotic symptoms necessitated intensive involvement.
Click to expand...
 
Andy said:
It's a case report of a single patient.


So poor, and possibly harmful, care for the first five years.


Sure, never mind actually being able to do stuff, or health actually improving, the real metric is confidence and hopefulness...
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Literally the main argument of every pseudoscience and self-help gurus out there: we can't show any objective benefits but you'll feel great and hopeful. Which is nice if you're healthy. Definitely useless when you're not. That's possibly the worst possible argument to use in this context, frankly. It reveals how it is both hollow and somehow completely full of shit.
 
wdb said:
How considerate of the current disbelieving professionals to acknowledge the traumatic impact of the previous disbelieving professionals.
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Clearly, the solution to gaslighting is more gaslighting.

Then you need a bit more gaslighting to "challenge" the damage done by the gaslighting performed to gaslight the gaslighting.
 
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