It is estimated about 8,000 to 10,000 children (those who are up to the age of 18) have multiple sclerosis (MS), with 5% of the total number being younger than 16.
MS therapies in children are running right along with therapies that were “built” for adults without many problems, even though more clinical trials are widely desired, and that is what brings us to Tysabri for children now.
“It is thought the rising numbers isn’t necessarily because it is becoming more common in kids,” says Matt Deerwester of Lima. “It is more because our technology has advanced so much over the course of this past decade, that we are now able to find it earlier and earlier.”
He continues, “I am seriously glad too, because the sooner we can find it, the sooner we can fight the advance of it but… I don’t know a lot of parents who wouldn’t hesitate, a least a little, before giving the okay for their children.”
A study was done with 35 patients, 25 who had been treated with at least one “disease-modifying agent” and 13 that had been previously treated with more than one agent, where it was seen Tysabri was not only well tolerated, but had also very favorable outcomes.
Safety, regarding progressive multifocal leukoencephalopathy (PML), was of utmost importance so, along with other tests, each child was tested for the JC Virus and they found 12 out of the 35 to have those antibodies. Four of the patients who tested positive then withdrew from the natalizumab study.
It was earlier this year when doctors had started suggesting that Tysabri patients get regular testing every six months, instead of what had been accepted before and it is an incredible relief doctors have been so progressive on making sure patients are tested for the JC Virus before starting this line of therapy now.
As far as this study, each patient underwent a transfusion every two months, were monitored with an MRI every three months with no PML seen and the authors of the paper, the researchers in Italy who had conducted the study, were very happy to see this, “Natalizumab is a promising and quite effective drug for paediatric MS cases with aggressive evolution and poor response to first line medications.”
There are still a few concerns yet to be addressed, such as long-term exposure to Tysabri and how to help these young patients manage the withdrawal of the drug now that the study has been completed.
Concerns about Tysabri being used as therapy before any other treatments, the article quoted Emmanuelle Waubant, MD, PhD, associate professor of Neurology at the University of California, “This is not at all the practice of pediatric MS centers usually. There is a limited amount of safety data in children, so we never do that, and when I say 'we,' I can speak for the Pediatric MS Network in the United States."
She went on to say, “In the short term I'm not concerned, but 4 or 5 years down the line, what's the safety for my pediatric patient?
Sources: medscape.com/viewarticle/753076; guide4living.com/multiple-sclerosis/children.htm; nationalmssociety.org/about-multiple-sclerosis/pediatric-ms/index.aspx
For more info: for those who live in Lima, Ohio, the Northwestern Ohio MS Chapter can be reached at: 401 Tomahawk Drive, Maumee, OH at (419) 897-7263. They are located approximately an hour and a half from Lima, Ohio and 45 minutes from Findlay, Ohio. For directions please click here at Bing Maps.
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