A Child With Neuropathy Can Face An Uncaring World

Today's post from nationalpainreport.com (see link below) doesn't mention neuropathy specifically but there is no doubt that neuropathy among children is a growing problem and as the article rightly points out, chronic pain in kids is often underestimated and badly treated. If you're living with neuropathy yourself, you can imagine how confusing those same symptoms must be for a child. Adults find it difficult enough to understand what's happening to them so unless a child has a very sympathetic doctor and understanding parents and friends, having nerve damage symptoms if you're under 15 can make for a very lonely life. It's very important for a child that the right diagnosis is made. After that, it's more than just medicinal treatment alone that's needed - a child needs counselling, understanding and support, to be able to make sense of confusing pains in a world that isn't necessarily prepared to be supportive. Other kids can be cruel so if anything, more attention needs to be given to the child with neuropathy than the adult. This article helps us understand why.

Chronic Pain and Children – the Story’s Not Much Better
Posted on March 8, 2016 By Ed Coghlan

Children suffer from pain, and generally medicine does not do a good job of treating them.

That’s the assessment Dr. Pradeep Chopra, who is an Assistant Professor in the Department of Medicine at the Brown Medical School and a nationally known pain management specialist.

It’s estimated that as many as 40% of children and adolescents complain of pain that occurs at least once weekly, and chronic pain affects at least 15%–20% of children. Just as chronic pain is more prevalent in women than men, girls report more pain than boys.

“Children deserve to be treated at least as well adults, and they generally are not,” Dr. Chopra told the National Pain Report recently. “Rather they are often blamed for their condition. It’s really a pretty sad state of affairs.”

The nation’s largest pain advocacy group has targeted pediatric pain as an issue.

“One of the major issues we see with pediatric pain is that it is undertreated and misdiagnosed,” said Paul Gileno who is Founder and President of the US Pain Foundation which will sponsor a pediatric pain camp in July and is planning a Take Control of Your Pain Event for later in the year.

When a child is complaining of pain, Dr. Chopra believes that treating physicians are not always listening the way they should to the patient.

“Oftentimes, they are told just do physical therapy and psychological treatment and you’ll get better, and then when they don’t get better they are blamed for their condition,” said Dr. Chopra

Chopra, who is Chairman of the Medical Advisory Board for the Coalition Against Pediatric Pain, says chronic pain can be so disabling that it can prevent a child from participating in normal age-appropriate activities, such as school, social events, and sports. It also can lead to isolation and depression as the child withdraws from friends and family. And, when a child suffers, the whole family suffers.

“If they don’t get better, the blame is often put on the kids which makes them sound like liars which is the worst thing you can do to a child,” said Dr. Chopra.

For doctors, Dr. Chopra’s prescription is simple: “when you see the child, and they tell you something, believe them.”

There are many, many sources of pain for children including cancer pain, complex regional pain syndrome, fibromyalgia, irritable bowel syndrome, juvenile arthritis and mitochondrial disease just to name a few.

“They are deserving of better treatment than they get,” said Chopra. “And it’s getting worse.”

The US Pain Foundation is recruiting more of what they call “pediatric pain warriors” who can share their stories to better educate young people, their parent and their doctors about the issue of pediatric pain.

http://nationalpainreport.com/chronic-pain-and-children-the-storys-not-much-better-8829755.html

WORLD FIRST LUNGS AWAITING TRANSPLANT PRESERVED 11 HOURS OUTSIDE BODY

The multidisciplinary transplant team at University Hospitals Leuven successfully preserved a set of donor lungs for over eleven hours with the help of a machine, the longest period ever reported. The lengthy preservation time was necessary because the patient needed a liver transplant immediately prior to the lung transplant. The patient has since left the hospital and is in good health

The patient, who suffered from chronic lung failure, developed sudden acute liver problems and went into a coma. The only surgical option for a patient with a terminal lung disease and a terminal liver disease is a combined lung and liver transplant.

But such double transplants pose a serious timing problem, says Dr. Dirk Van Raemdonck, who helped perform the surgery: "Normally, the lung transplant is carried out before the liver transplant. A donor lung typically can only be preserved outside the body for a maximum of ten hours. And a lung transplant can only be successful if the liver is still working properly. That is why we needed to transplant the liver before the lungs for this patient. To keep the donor lungs in good shape long enough after removal from the donor and prior to transplantation, our medical team used a new preservation technique."

The lungs were not put on ice as they usually are, but were preserved using a machine (OCS LUNG™) that provided continual flushing and oxygen at room temperature. Dr. Van Raemdonck: "The machine enabled us to keep the lungs outside the body for more than eleven hours with no negative effects, the longest period ever reported -- a world first."

World first

The new technique enables doctors to preserve lungs outside the body longer. The machine also provides an analysis of lung quality and can even improve lung function in anticipation of the transplant. A similar machine already exists for kidneys and results show that older kidneys preserved using that machine functioned better immediately after transplantation than kidneys preserved on ice did.

Currently, however, the new technique is not being reimbursed by insurance providers. The technique is being used only in special cases. Costs for this transplantation were covered entirely by University Hospitals Leuven and the maker of the machine.