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hi my name is amber and i have a son who is 18 months and he had been diagnosed with Hsv2 and encephalitis when he was about 4 weeks old.i was wondering if there was anyone who was going through the same thing with their child or had gone through it.
Hello AmberMarie2489,
There is a group of parents with young children who have had encephalitis.
I forwarded you posting to someone who should be able to provide you with some contact information.
-dannon
Hello AmberMarie (and thank you, Dannon)...
Yes, there is a group for parents of encephalitis... check out http://health.groups.yahoo.com/group/Nceph2Group/ .
" N-C.E.P.H.- National Childhood Encephalitis Parent's Help Group which is an open Forum/ Email exchange
Location: United States
Established October 2000
We talk about issues related to children who have survived encephalitis. This is a parent's email exchange network. "
My son had HSV at age 6 - he's 9 now. He still has some issues with seizures, migraines, and some memory issues, but he's mostly recovered.
I find myself using a couple of different E support group sites for different reasons. I like Encephalitis Global because there are so many adults here who can describe what they are feeling. It helps me to put myself in my son's shoes. I also visit the Nceph2Group on Yahoo. It's a good group to connect with other parents.
There's also a small (but growing) support group that a couple of caregivers created. It's a mix of caregivers, not just parents, but spouses, friends, etc. of someone who survived E. It's a great place to discuss how you're coping as a caregiver and share your joys and frustrations about caring for a sick loved one. Here's the link:
http://caregivers4enceph.ning.com/
This is not an easy journey, but you'll find lots of support out here.
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