Our 8yo ds was diagnosed with HSE a few months back. He was sick for a few days headache, vomiting, fever until he had a seizure and went totally numb starring into space w/no responses. We originally thought it was just the flu but we immediately called 911 and he was lifeflighted to a local Children's Hospital which we are so thankful for otherwise he may not have made it. He was intubated and put on several different meds until we got the final diagnosis and went home on acyclovir. He was in the hospital for 7 days. We are now trying to return to life as we once knew it, however I am wondering if that will ever be possible. Since it was the HSE, I am wondering what the chance of reoccurence is and will he be more suseptible to other things. He seems to have a very short fuse when he doesn't get his way and I am afraid this is going to be a big problem for us in school. I have read so much on the net and think now I am paranoid about every little thing like him having another seizure and me not being there or him having another bout with Encephalitis itself. I know I cannot be with him 24/7 but I guess I am looking for some others in the same boat as a caregiver. Thanks for letting me vent and looking forward to joining in on more discussions.
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Life after Diagnosis of HSE in 8yo
- By Nubbsy
- Posted October 7, 2009 at 1:51 pm · 5 replies
- In Children and encephalitis
- Shared with the public
Explore topics in this discussion:
Seizures Fever Anxiety Memory Encephalitis Depression Trileptal Acyclovir
5 replies
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- Newest first
- By IngridGuerci
- Posted October 7, 2009 at 2:23 pm
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Hi there! Welcome to the group. I am a survivor of HSE but I wasn't a kid, I was 45 years old. Try to remember that your son probably has a headache, is light-sensitive and sensitive to noise. There is a group for parents of children whom you might be interested in contacting. If there is someone out there right now, can you send the web site information? I don't have it with me.
Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)
- By MichelleN
- Posted October 7, 2009 at 2:56 pm
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I'm not sure this is the site you're looking for, but it's one I have saved for care givers. http://health.groups.yahoo.com/group/Nceph2Group/
Michelle
- By WendyStation
- Posted October 7, 2009 at 7:11 pm
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I agree with Ingrid and Michelle...
...as well as discussing here, you may wish to join another group... they are a Yahoo group of parents of encephalitis. Check out http://health.groups.yahoo.com/group/Nceph2Group/ .
- By petersencm
- Posted October 8, 2009 at 4:39 pm
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Oh I wish I could help more. What you explained is almost to the 'T' of what happened to me. However, I was about 23 when I had that happened.
I don't mean to ENcourage you too much but I wound up only having a memory problem but nothing physical.
Please tell us if there is more noticeable physical problems or is it more just mental. That info could help others know if they can help you.
Hang in there. The first few months are the hardest for most. Just figuring out what routines will be needed is half the battle.
I wish I could give you more help.
- By DVirginia
- Posted October 8, 2009 at 7:07 pm
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Oh my gosh - your story is SO similar to ours. My son had HSE two years ago (he was 6). He had flu-like symptoms for almost a week before he seized - he just froze. Couldn't talk, couldn't move, couldn't look us in the eyes. It was SO scary. We took him to our local hospital and he was airlifted to Children's. He was in the hospital for 9 days total. He came home with IV acyclovir, too. My son had complex partial seizures for a couple of months and we got those controlled with Trileptal.
Once those were under control, we thought everything was fine. He seemed fully recovered, but we eventually discovered that he had many residuals that weren't obvious, but were giving him lots of trouble.
The last two years have been very bumpy. We would have a couple of good months, and then trouble. He had terrible depression and anxiety for awhile - he's now on medication. He had a period where he had terrible migraines. Those are under control now. He had neuropsych testing and we discovered he had problems with his working memory, attention, executive function, and fine motor skills.
This year, we're noticing sensory issues (hightened sense of smell, sound, touch...) and the fine motor skills issues are starting to affect his ability to keep up with writing assignements at school. He has some accomodations at school (limited homework and breaks when he needs them).
Wow. There's just so much to tell. I could go on and on. Please ask any specific questions you have an I can answer. Don't hesitate to "friend" me and I can answer more in email.
I'm mostly just SO glad that you found this site. Our docs didn't warn us at all about the emotional things that could result and we ignored some of it for awhile. By the time he got help (psychological - he still sees a therapist weekly), he was about to go over the edge. It was emotionally overwhelming. But, it DOES get better.
Wow. I'm just feeling very touched by your story.
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