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I was wondering if there is anyone out there that has a child that had herpies encephalitis, so that I could discuss with them some daily issues I deal with everyday with my son.
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herpies 1 encephalitis
- By godstrengthenme
- Posted January 9, 2009 at 3:17 am · 12 replies
- In Children and encephalitis
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12 replies
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- By dannon
- Posted January 9, 2009 at 8:43 am
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godstrengthenme,
Yes, there are parents here who can share their knowledge with you in caring for your Five Year Old Son who had Encephalitis as an Infant.
Hopefully, one of the many parents who lurk among us will be in touch with you some how.
There was or is a children's group.
I'm not sure if it is still going, or has disbanded.
Wendy may be able to add to that one.
Things are usually sow after holidays, but keep posting and hopefully a friend will find you.
-dannon
- By DVirginia
- Posted January 9, 2009 at 11:43 am
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Hi - my son had herpes E when he was 6 - he's 8 now. Because he was older when he got E, and it was detected and treated pretty quickly, the impacts haven't been as severe as what it sounds like you're going through. He's on seizure medication, but hasn't had a seizure in a year, so the meds are controlling it. He's had neuropsych testing and has some deficits in attention, working memory, executive function, and motor skills.
Our biggest challenge has been in dealing with his emotions (he has HUGE meltdowns and tantrums like a toddler, but he's a strong 8 year old and can do a lot of damage when he's upset) and helping him cope with his deficits. We're working with his school to get him certain accomodations to help make his day less stressful.
It's been really stressful as a Mom to try and understand what's going on - it's so hard when they can't explain to you what they're feeling. It's also been stressful for the whole family - our 4 year old daughter is often on the receiving end of his rages. And, my husband and I disagree often on how to treat his behavioral issues. My son sees a psychologist weekly and I'll be joining a weekly parent's support group with his therapist in the next couple of weeks.
It's exhausting. I cry a lot. But, I also know that my sweet boy needs me and I try and find those great moments and hold onto them.
And yes - there is a support group on Yahoo for parents of children with E. Try this link:
http://health.groups.yahoo.com/group/Nceph2Group/?v=1&t=search&ch=web&pub=g roups&sec=group&slk=1
If it doesn't work, search for “Nceph2Group” on the Yahoo.com, Groups link.
Good luck and you are not alone!
- By WendyStation
- Posted January 9, 2009 at 11:47 am
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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. "
- By DVirginia
- Posted January 9, 2009 at 11:54 am
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One thing I wanted to add - I find the Yahoo Group helpful from a parenting/caretaker standpoint. The Encephalitis Global site is helpful in a different way. Since there are so many adult E survivors on this site, I get much more insight on what my son might be going through because an adult can more clearly explain what they are feeling and experiencing.
- By godstrengthenme
- Posted January 10, 2009 at 2:01 pm
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When you said your son has fits what do you mean? My son will have inapporite behavories like if I give him his cup which he wants but he will cry although he really wants it. He also loves to go through the house and wreck everything throwing thing off the tables anything that can be throw or made mess of. I had to take all my lamps out of the living room and I can not have any pretty things setting around. Does your son have any brain damage in the temporal lobes? My son has right temporal lobe damage. He does not talk either. Another question I have is how quickly did they treat your son's illness? Lane's was caught within proabbly a week. Did the doctors tell you that it was better that your son got it when he was older?
- By MichelleN
- Posted January 10, 2009 at 2:06 pm
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I'm not a caregiver, but someone who has HE. I cry when I am happy and laugh when I am sad. From what my family says I threw tantrums and would do nothing except scream for weeks at least. That has gotten better even though I do still cry when things are funny or laugh when I'm sad, but it's not always backwards anymore.
I hope your son gets better sooner rather than later.
Michelle
- By godstrengthenme
- Posted January 10, 2009 at 2:15 pm
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How old were you when you got herpies encphilitis, and how old are you now? Do you have any brain damage?
- By MichelleN
- Posted January 10, 2009 at 2:23 pm
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I am not sure when I came down with E, but I think 29. I am 32 for a little while longer. If I find my brain I'll let you know if it's damaged.
Yes, I can't recognize people and that includes myself. I can recognize animals much easier. I can't remember names. I can't read more than a paragraph with out having to reread things. Obviously I ended up with a bad sense of humor. I'm not sure what else has been affected, but I'm sure there is more.
Michelle
- By DVirginia
- Posted January 12, 2009 at 10:00 am
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I'm not sure I'd say that my son has inapproproate behaviors, but he has really big trouble with frustration. He gets really angry. He throws things, although, lately, he's been sensible enough to throw mostly soft things like pillows so we haven't had to rearrange our house much. :-) If his sister is making too much noise, or bumps him on accident, he just immediately reacts and puts a pillow to her face - or shoves her really hard. So far, no one has been hurt, but I worry about that happening. He seems to be able to control his frustration at school, but then takes it out on us at home.
His last MRI was about 6 months after the E and they did not detect anything out of the ordinary. So, if he has damage, it's at a cellular level that can't be seen in an MRI. His E occured in the temporal lobes, too (which I think is common for the Herpes virus). He's had neuropsych testing, which your son might not be old enough for yet, and that helped us identify his deficits.
The doctors didn't say that it was better that he was older, but I've gotten that impression from the various websites. Think of it this way, if the damage from E causes your child to have difficulty learning new things (or remembering things), and they are older when they have E, they have a few less things to have to learn - or they have more things they've already learned that are more likley to "stick." Make sense?
Re: the encephalitis. He was sick for about a 5 days (fever, vomiting) and then started to feel better (no fever, but still very fatigued). But, about 3 days later he seized (just completely froze - couldn't talk, move, etc.). He was airlifted to Children's Hospital (we live in the DC area) and he was being treated very quickly by a great team of docs who knew exactly what they were dealing with. I feel fortunate that we've had such a great facility close by.
- By MichelleN
- Posted January 12, 2009 at 10:13 am
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DVirginia, I've had many MRI's that come back with nothing. I've even been told by doctors that I don't have seizures anymore. I've had 3 nurses see me have them they just aren't usually the grand mal.
In some ways I think you are right about having memories in more places as an adult so we don't have to relearn as much. I have a friend that has HE and no one would ever know that she has anything to do with E if she didn't tell them. She was an infant though. The amount of time until they catch the E makes a HUGE difference as well.
mICHELLE
- By godstrengthenme
- Posted January 12, 2009 at 1:36 pm
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My son was treated in about the same time yours was, but what did they treat him with? With my son they gave him aycalivir (I think that is how it is spelled?) through an IV. I wonder why my son has brain damage and your does not?
- By DVirginia
- Posted January 12, 2009 at 2:00 pm
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He had IV acyclovir (21 day course), too, plus they put him on a ton of antibiotics, just in case it was something else. He was unconscious and intubated for about 3 days (on massive sedatives the entire time). I can't explain why you are seeing brain damage and we're not. I can say that while many people on these sites have had similar symptons, every case is SO unique. The outcomes depend on so many variables related to the structure of the brain, the unique behavior of the virus, and many other factors. It doesn't sound like the docs can even explain why.
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