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Nora1987

Neonatal herpes transimisson

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Nora1987

Does anyone have any updates on their children who they have transmitted HSV to? I'm currently in a situation where I believe my child could have contracted HSV from me and the doctors don't want to pursue any further tests because they believe me child would be very sick by now.. When she was first born she developed pustules on her face and had eye discharge which was diagnosed as blocked tear ducts and neonatal acne.. The third week of her life  she started having a hard time sleeping and has been having issues with sleeping ever since.. My daughter is now 5 months old and I'm still very scared that she contracted neonatal hsv CNS and it's going undiagnosed.. She had what I thought were outbreaks, but the doctors didn't believe that they were vesicles and therefore weren't swabbed.. She currently still gets random spots on her face and I'm scared that these are recurring outbreaks and just causing more damage to her CNS.. She also had her blood drawn at 3 months old.. It was a hsv PCR, igg and igm, but I have read that these are not effective tests in newborns.. Does anyone have experience with neonatal HSV transmission which was undiagnosed for this long.. Or any updates on their children having CNS damage from herpes? 

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WilsoInAus

I always believe it is good to question doctors, seek second opinions etc. This is to establish the complete fact base and then it is important to reach appropriate conclusions.

To this end, something is missing... what herpes do you have? Do you have oral HSV-1 and/or genital HSV-2. Does the father have oral HSV-1?

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Nora1987

I have gone after second opinions.. Seen multiple different MDs in the practice and also have seen infectious disease doctors, but I believe they were going based off of my blood results and not at the fact that I stated that I noticed something at delivery.. Which was too late to swab.. I have oral hsv but my number was so high that I believe I could also have hsv 2.. The father also has hsv 1.. By my baby was showing so many of the symptoms associated with neonatal herpes that it just seemed to big of a coincidence.. I keep bringing up my concerns about neonatal hsv CNS to every doctor but I feel like I'm dismissed because her being 5 months they keep saying she would be VERY sick by now!

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WilsoInAus

It is not at all likely you have HSV-2. This can in no way be inferred from a HSV-1 test or a combined HSV1/2 test. As such it is quite safe to assume that you do not have HSV-2 and this was not at all a risk during childbirth.

Next is the risk of oral HSV-1 from you and the father. This is a genuine risk and there is a 50% chance that transmission will occur to your child by the time they leave school. A large proportion of people are infected in the first few months of life. I am one such example amongst hundreds of millions on the planet right now... and that probably includes you and your partner. The point being that in the absolute majority of cases, infection does not harm the child in any way. There might be patches of sores for a little while, but no lasting impact.

In exceptionally rare cases, usually accompanying an immune issue, anti virals may be required. Rest assured your doctors probably take no chances here. I am surprised they haven't swabbed for HSV but then again they do know what they are looking at and also no there's is nothing really they need to do if it is HSV unless your baby is very sick.

Blood testing using IgM and IgG is appropriate for babies and credible. Hence this can only be interpreted as providing some peace of mind.

All in I would request a swab for your peace of mind, I cannot see why this would be refused. Earnestly request this on the basis of both parents having oral HSV-1.

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Lisajd

Children do have sleeping issues. My nephew had childrens insomnia and was sleeping about 4 or 5 hours a night and be up late thru not being able to sleep.  

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Nora1987

I really do believe that I had hsv 2 during delivery or atleast shedding the virus because I had a sore that developed a week after birth..I also had premature rupture of membranes and they did q couple exams during the delivery.. My baby also swallowed myconium so there were so many ways of her getting the virus..  My baby also showed so many symptoms associated with herpes.. If it was herpes encephalitis or meningitis, it would have caused brain damage to her and that's why I believe she has a problem with sleeping.. I keep reading that babies would develop cerebral palsy have so many similar symptoms.. If she had hsv CNS and kept having these recurrences wouldn't she need to be admitted and received acyclovir? Even if she didn't present to be very sick? I'm scared that she showed symptoms of meningitis when she was a newborn and that I missed them as new born symptoms and the damage has been done and just getting worse if she keeps having outbreaks.. They swabbed her mucous membranes before the outbreaks at 5 weeks old by PCR.. But my concern is that the virus may not have been present at that time in her membranes.. When I asked for a reswab they didn't think it was necessary since the other ones were already negative.. Do you think that if these were hsv outbreaks and they kept reoccurring she would be getting worse? I keep reading that deactivation of virus with reoccurrences is a grave prognosis.. Also I kept reading how serology isn't of any benefit since the baby doesn't develop antibodies to hsv till 6-12 months.. 

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Nora1987

Lisajd.. It was just all of a sudden at 3 weeks of age and with hsv CNS-irritability was one of the biggest symptoms.. So I immediately thought this was associated with hsv.. My baby is 5 months old and I feel like the sleeping is just getting worse.. 

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Lisajd

Im no expert as i have no kids.  All you can do is keep pursuing with the drs.  I hope it goes well.  

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Bear1984

Hi,

Are there any updates on your baby?  

I am in a very similar situation. Really worried my baby could have contracted hsv post-natally from a cold sore on my mouth and/or suspected herpetic whitlow and herpes on nipple that I developed about 5 days after giving birth and has not fully resolved since (despite being on acyclovir for weeks now). I think the stress means my immune system can't clear the virus.

She is now nearly 6 weeks old. At approx 3 weeks she developed a rash on her cheeks that everyone said was just baby acne or cradle cap and therefore didn't swab (there were no obvious blisters). Around the same time, she had a couple of days of poor feeding and slight lethargy. We went to hospital where they observed her overnight, said she was fine and (understandably) refused to do spinal tap etc as no obvious physical symptoms.

the rash has now come back at week 5 and 1/2 - It is now on her forehead instead of her cheeks.  It is red and angry but no obvious blisters. 

Im terrified she contracted hsv from me, and that it could have spread to her brain without showing the very serious symptoms that everyone says I would see (ie that she is having 'mild' outbreaks of hsv on the skin and brain). I worry that this 'mild' outbreak was not diagnosed and she will be at risk.

i have seen so many specialists who all tell me that (1) my antibodies would protect her from getting the viru, so I should relax (2) neonatal herpes is v rare, so I should relax and (3) any symptoms would be very obvious. None of this gives me any comfort. 

Would really appreciate hearing how your story ended.

Is there a point at which hsv is no longer so dangerous to babies? Ie is there a point at which I can relax??!

 

 

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