While still under the wonderful placebo effect I am experiencing I want to address a cloud that is looming over our little MS community. Should my mind begin to understand that it has been mesmerized into believing that I do not have MS, my cognitive abilities should quickly regress to its unfortunate pre-angioplasty state of perpetual confusion. The MS societies, Neanderthalian neurologists and companies like Biogen and Lilly undoubtedly are planning their next delay tactic to discredit and cartoonize medical heretics like Dr. Zamboni. So before the other shoe drops, please consider the following:
National Multiple Sclerosis Society of America:
Increasing evidence suggests that the disease-modifying therapies (FDA approved for use in adults) are safe and well tolerated in children; *however large clinical trials are needed to assess treatment efficacy.
Most symptoms of MS seen in children are similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy). Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS.
Psychosocial consequences of MS in children and adolescents may affect academic performance, family relations, and specific adolescent issues including self-image and relationships with peers. An evaluation by a trained professional can help determine appropriate interventions.
Pediatricians may not be familiar with MS because they are not expecting to see it in children.
*When are large clinical trials not needed? We are well aware of the efficacy of these trials. There are millions of people injecting themselves with the fruits of these trials as we speak. The fact is that the number of children diagnosed each year is steadily rising. By the time the governments decide that angioplasty for CCSVI isn’t going to destroy the world or turn us into zombies, there will be a fresh supply of little consumers to begin their regimen of DMD’s that will treat them as effectively as they did their parents. Who is addressing the needs of children born with venous insufficiency problems? Most authorities with the capability of making a credible analysis of the condition agree that CCSVI is congenital. There is no avenue at this time to prevent the pediatric development of MS symptoms. There is an urgent need to study the full ramifications of venous insufficiency as it relates to MS. There may be sufficient time to forestall the devastation of this condition and the progressive disability of Multiple Sclerosis in the rising generation. As a charter member of the “Placebo Society”, words like hasty, premature, unfounded, irrelevant, anecdotal, fanatical, and desperate are past the point of mere annoyance and frustration to me. Rather than offering support and political approval to intelligent and self motivated laymen, they do all in their power to discredit and exploit us. Between their smear campaigns and attempts to dismiss people like me, the powers that be are in effect condemning our children to suffer all the pain, disappointment, disability and censure that we are forced to swallow and live the dreams of the hopeless.
<An estimated 8,000-10,000 children have multiple sclerosis in the United States, and another 10,000-15,000 experience disorders that may be related to MS. Cognitive changes are common in adults with MS, and although children with MS can experience difficulties remembering and concentrating, the extent of these problems is not known.
In the current study, researchers administered a battery of 17 neuropsychological tests to 63 children with MS (in this study, defined as aged 17 and younger) referred to Italian MS centers and 57 children without MS. Among children with MS, 31% failed at least three tests – indicating significant cognitive impairment – compared with less than 5% of children without MS. A small percentage (8%) of the children with MS had very low IQ scores, compared with none of the children without MS. The investigators also found a link between low IQ scores and earlier onset of MS symptoms.
The answer to the problem is, of course new clinical studies and teaching the children to deal with the inevitable. One solution I found interesting is to move the desk of a child with MS to the front of the class:
“Identifying cognitive problems early can lead to appropriate interventions,” says Deborah Hertz, MPH, Associate Vice President of Medical Programs for the National MS Society. “The team of professionals at each of our pediatric centers includes neuropsychologists who perform comprehensive cognitive evaluations. There are strategies that children can use at school to compensate for attention, memory and other cognitive impairments, such as moving a child’s seat to the front of the class. We need to identify these issues as early as possible so that we can minimize their impact on children with MS. “Identifying cognitive problems early can lead to appropriate interventions.”
<May 13 issue of Neurology (2008;70:1891-1897).
Should someone learn that they have a child with CCSVI at age 12, they do not have a plethora of intervention options to nurse them along until the clinical trials and studies are completed. By then, your child will be a young adult with full blown MS, lesions, depression and the entire gift box of neurological anomalies. The causal factors of Multiple Sclerosis will not be addressed and rectified in that short span of time. Do we really want a Tsybari welcome package to become a rite of passage for these children? There are so many diseases with little hope of a breakthrough or cure on the horizon. That is not true of Multiple Sclerosis and CCSVI. We cannot allow the proof we have supplied at this point to remain in the hands of drug companies and a select few who have proclaimed they are our medical guardians. Progress will never be made toward the desired result of MS containment and viable, healing treatment.
Most symptoms of MS seen in children are similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy). Pediatricians may not be familiar with MS because they are not expecting to see it in children. They surely will not be looking for venous issues.
Plans and dreams for the future may also require modification. The student with her heart set on attending a military academy may need to re-evaluate her goals and develop a Plan B. Providing choices is important to help the student seek options instead of focusing on that one broken path or dream. Many students report that the most difficult part of living with MS is lack of understanding from peers and teachers about invisible symptoms such as fatigue. “You look so good… you can’t be sick!” is a common reaction. It’s important to understand these invisible symptoms and support the student at her current level of comfort. There are very specific physical & emotional stressors that students with MS may experience in school.
Bladder symptoms requiring frequent, urgent trips to the bathroom
Difficulty navigating stairs due to weakness, fatigue or poor balance
A change in academic placement due to cognitive changes
Visual changes that, unknown to others, may come and go, and interfere with classroom functioning
Depression or mood disorder
Inconsistent level of empathy and support from school staff
Is it really asking too much to address CCSVI now? I was told yesterday, “You are demanding miracles from people who can’t perform them. Medicine is conservative for the protection of the patients. Do you understand the catastrophic mistakes that can be made when ineffective or possibly dangerous treatments are rushed by patients with no medical training?” I did mention something about Thalidomide in the 60’s. I couldn’t help myself. I don’t want miracles, but it is imperative that the successful treatment of so many people with MS be given the voice to address the magnitude of the negative consequence of dismissing us as anecdotal and therefore insignificant. We are what they can see before their own eyes. If wishing I could be symptom free would have brought me relief, that would surely have happened long before I heard about Chronic Cerebro-Spinal Venous Insufficiency.