Infant HSV2 encephalitis (my baby boy)

Kristen - posted on 02/15/2012 ( 7 moms have responded )

39

0

4

Hello mi name is kristen i hav a 3 month old and when he was 2 weeks old he turned blue on me he was sent to the hospital and stayed there for a month my baby boy was diagnosed with HSV 2 encephalitis and multiple strokes i didnt know i had HSV 2 and he got it when he was born from me i blam(ed) miself im not sure where im at with that but he sees 6 different drs a month and 3 different mrdd groups im lucky to still have mi baby 70% of kids die from this he is such a fighter we hav no idea whats to come for him he doesnt show any sins of sight well off and on he does and ive been reading alot about cerebral palsy and alot pertains to mi baby i dont know where mi head is im scared for him i cant find anything to show any stories with kids like him and long term ive googled everything i can think of i love mi baby so much i just want him to be ok i didnt know if anyone has ever expirenced this or know anything i hope i get some feedback would mean alot no one knows what he has so im never really able to talk about it thank you for your time.

7 Comments

View replies by

Chloe - posted on 09/19/2012

1

0

0

I feel so alone!nowthat ihave found you guys! Itssuch a relief already..... I was diagnosed with hsv 2 backin 2008, i got scared when i. Knew i ws prgnant 4 yrs aftr being diagnosed with hsv ....., i read that ifu have hsv u shouldget a congenital anomaly screeng knowing that u have std, so we did @6 months we discovered my baby hs gastroschsis so he came out3 wks early he was operated twice, i gave him up already.....I dint know f hed survive he hd seizures aftr the operation so we give phenobarb for maintenanc! I was so depressed i dint know what to do already for 7 months we were cleaning up his poop in a colostomy bag! He looks so weak but he manages to laugh n giggle i love my baby so much he hs taught me a lot if things, realized how beautiful it is to live..these babies are so tough...always remember we are here to take care n love them the best way we can and God will do the rest! I feel for u that we cnt really talk abt our case casually like any other illness! Its just so hard deal with it especially if u have relatives in the medical field theyd ask why did this happen to my grandson etc etc.....theyd go find the history?...i just wish there will be a cure with this disease?...by the way my baby is already 2 y.o he has some partial delay with regards to motor skills but with prayers im sure our babies will catch up

Charla - posted on 09/16/2012

5

0

0

The same thing happend when my sister was born but her case was very severe. She was in the hospital for 4 months and there were a few points where they didn't think she would survive. They told my dad and stepmom that she would never live a normal life... they told them that she would never crawl, roll over, walk, talk, or even do simple tasks like put her finges to her mouth.... She is now 12 and can do everything but talk. She does have some mental disabilities, but there is alot that she over came. She is very happy and that is all that matters. It will be alot of work but you will get threw it. Just remember to be strong and keep your head up!

Becky - posted on 09/16/2012

2

21

0

Please dont blame yourself my little boy is three now he was diagnosed with herpes syplex2 at a week old , he had siezures , enchaphalitis liver falier , and needed resusatatin 3 times i had no idea what the out come would be for him , hes my everythin and i still blame myself ...hes still on medication vacyclovo and phenytoin for epilepsy but to look at him hes perfect , he is just a normal three yr old a he has speech problems and lacks concentration but considerin what he went through im amazed , it took three months in hospital a month on life support ...like yourself there is just not enough info as its so rare but all pregnant woman should be screend for this as i didnt have any idea i carried herpes x

Kristen - posted on 02/16/2012

39

0

4

i called mi dr as soon as i found out cuz the looked up there 4 hrs before i ever delivered him nd for a infant to cath it the mother has to hav a outbreak at that time and he sed sorry up and down that they seen nothing and as far as tests that is one they dont run because the test can not differenciate( sorry if i spellec that worg) hsv 1 and hsv 2 and they dont want to rush to a c-section if its just hsv 1 the encephalitis was caused from hsv strokess were also caused from the hsv cuz i was in his spinal fluid they described it as a shower effect of minni strokes and two large ones in the back of his brain i just wish i could know now what mi son will b like wen he is old ya know

Katherine - posted on 02/16/2012

65,420

232

5195

I'm surprised they didn't test you for this while you were pregnant. Usually they run a battery of tests to make sure you don't have anything. Don't blame yourself. The tests could have missed it.



As far as your baby he is obviously doing well if he is in the 30% that has survived this! That's great. So is the cause of the encephalitis from the HSV? And the strokes too?

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms