Approximately 5% of people with MS experience onset of the disease under the age of 16. The diagnostic criteria for adult and pediatric onset MS is identical but the differential diagnosis differs; specifically, children more commonly experience acute disseminated encephalomyelitis (ADEM), a mono phasic form (this means it happens once unlike MS) of inflammatory demyelination most commonly associated with recent viral infections or immunizations. The international pediatric MS consortium has established diagnostic criteria for MS and ADEM to ensure that children with ADEM do not prematurely receive a diagnosis of MS. ADEM can look very similar to MS at first but the children rapidly become quite ill and encephalopathic (meaning confused and lethargic often with behavior changes and sometimes progressing to coma), which is very rare in MS, and the MRI appearance is typically quite different. Unfortunately, 10-20% of children do not recover well from ADEM and some will even go on to develop MS. Other conditions considered quite rare in adults must also be considered in a child presenting with an MS-like disorder, but these conditions are usually easy to exclude by an experienced neurologist with appropriate diagnostic evaluations.
There are key features of Pediatric MS that dictate a slightly different therapeutic approach compared to adult onset MS:
1. Kids with MS tend to experience far more inflammatory activity than adults; This means more relapses and more new lesions developing on repeat MRI scans. This also makes it far easier to use relapses and MRI activity to guide therapeutic decisions. In my experience it is important to initiate therapy early in these children, monitor their response closely and alter therapy if they are not responding either by clinical or radiological criteria.
2. While there is no evidence that kids respond differently to disease modifying therapy, they certainly hate injections as much as adults and in my experience require a lot of guidance and supervision to make sure they keep to their treatment schedule. This is particularly true of kids with MS once they leave home to go to college. Newer oral and infused therapies may improve adherence to treatment regimens
3. Kids with MS are often treated with IV immunoglobulin (Ig) for relapses, a practice now rare in adults. I rarely find that IV Ig therapy is as useful as treatment with steroids in kids or adults. If a kid does not respond to high dose steroids for a relapse, I prefer to treat them with plasma exchange
4. Kids with MS often look quite good to the casual observer but cognitive problems occur early and can interfere with learning and school; if unrecognized these cognitive problems may manifest as a behavioral disturbance. Kids with MS do best with learning center evaluations and adaptions that allow them to thrive better in school. This is particularly true when frequent relapses interfere with large chunks of the school year.
5. Kids with MS tend to develop disabilities at a younger age, but it is hoped that early aggressive treatment will change this outcome.
6. Kids with MS do best with support and interaction with other kids with MS; remember they are really a minority and most programs are geared for adults.
7. Lastly, it is important to look after the parents of kids with MS. They are the best resource available to the child but the disease can cause a lot of stress and family disruptions. Supportive group activities for parents, especially those with disabled children, and the ability to get away even for a few hours are highly constructive. It is also best for parents to have direct assess to their doctor for emergencies or concerns. The Pediatric Multiple Sclerosis Alliance is just organizing and would be a great place to start for support. You can click on this link for pediatric MS groups and resources:
-Rip Kinkel, MD
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