Most MS patients likely wait a long time before they receive a Multiple Sclerosis diagnosis. Since there is not a definitive test that positively discloses MS, it seems that neurologists are hesitant to give the chronic diagnosis quickly. This is even more obvious when a child presents with MS symptoms. When our daughter was 10 years old, in 1999, it was not believed that children could develop MS. We lived with an alternative diagnosis of ADEM. Acute disseminated encephalomyelitis (ADEM) is typically a one time episode with symptoms that mimic MS. We lived with this diagnosis for almost 2 years while she experienced several attacks. At this point, we were told that even though it was still believed that she did not have MS, she would be treated for the disease since the neurologists did not know what else to do.
After 8 years living with the ADEM diagnosis that was just being stubborn, we were given the official diagnosis. Because of living with the hope for such a long time that she would outgrow these attacks and be able to live a full life, denial was always our fallback. As much as our adult MS specialist that worked along our pediatric neurologist was convinced she had MS, I think deep down we were hoping he was wrong and someday we would get our daughter back. Now that we are 15 years into this journey, we know that she will never return to her former self. The best we can hope for now is that she slows her decline. I imagine that adults faced with the same diagnosis also have a very hard time admitting that this is a chronic illness and it will impact their lives to some degree.
The hardest part about seeing your child or any loved one go through this disease is that there is nothing you can do to fix it. The best we can do is to be there for moral support. The best thing we can do for ourselves as caregivers is to reach out to others who are also experiencing the same life altering situation. We are lucky to have the internet and social media available to be able to find so many struggling with the same feelings. I don’t know if I would have been able to get through the rough patches if not for social media and the ability it gives us to connect. Even if you know of others with MS, every patient is unique in their symptoms. The better the ability to connect with others on the social media pages helps us immensely.
If you are a caregiver of a child with MS, please join me on the Facebook group Pediatric Multiple Sclerosis Alliance.
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