Looking for more information

[Sgastang]

Hey guy's, I don't personally suffer from hsv but my daughter was hospitalized at 3weeks of age due to contracting hsv type 1 with a cold sore in her left eye. She's now 6mnths old and currently on acyclovir 3 times a day. Other than what our paeds team and eye specialist has told us I know nothing about this. I'm hoping to find out more information about this to help my daughter to deal with this in the future. 

We are due to stop the acyclovir at the end of the month. Pretty nervous about this happening if I'm honest. I don't know what to expect or what our next step is.. 

[Cas9]

1 hour ago, Sgastang said:

Hey guy's, I don't personally suffer from hsv but my daughter was hospitalized at 3weeks of age due to contracting hsv type 1 with a cold sore in her left eye. She's now 6mnths old and currently on acyclovir 3 times a day. Other than what our paeds team and eye specialist has told us I know nothing about this. I'm hoping to find out more information about this to help my daughter to deal with this in the future. 

We are due to stop the acyclovir at the end of the month. Pretty nervous about this happening if I'm honest. I don't know what to expect or what our next step is.. 

Just curious; what do you mean in her left eye? That implies the virus has infected her eyeball itself OR the inner lid/s. So is that what you mean or is the infection on the outside surface of the lid/s or off to the side a bit. I mean, where EXACTLY is the location of the infection and how does it manifest itself; i.e. a sore/blister?

[crisper]

 

1 hour ago, Sgastang said:

Hey guy's, I don't personally suffer from hsv but my daughter was hospitalized at 3weeks of age due to contracting hsv type 1 with a cold sore in her left eye. She's now 6mnths old and currently on acyclovir 3 times a day. Other than what our paeds team and eye specialist has told us I know nothing about this. I'm hoping to find out more information about this to help my daughter to deal with this in the future. 

We are due to stop the acyclovir at the end of the month. Pretty nervous about this happening if I'm honest. I don't know what to expect or what our next step is.. 

Sgastang, I am so sorry for your baby's condition.  Many on this site are very much informed on what is hsv.  I suggest you try connecting to the Chat room around 8pm est. Usually, at that time there are persons connected whom  can answer your questions.  What I can share with you is there is light at the end of the tunnel.  There are many out there working on new therapies and searching for the cure.  I can say with confidence your child will not have to live with this forever.   Go to the research and cures section of the site and read the posts.

Here are a couple of names of persons working on making the lives of those with hsv more manageable: 

Dr. William Halford 

Terri Warren, NP

Ian Frazier 

Cullen and Bloom

CRISPR technology 

Also, there is a great eye hospital in Miami, Florida called Bascom Palmer. They might have more information. 

Please know we are all here to help and support you.  

 

 

[doh!]

My doctor said his son suffered similarly around the age of 1- around, not in, the eye.
I didn't ask, but from the way he spoke it sounded like it hasn't affected his son throughout his life.

[Elle22]

I would say the main step with going off of acyclovir would be to make sure she's healthy. Good immune function keeps the virus in check.  When there is an active outbreak, there's more risk for transmission. Direct skin to skin contact from an infected to an infectable area is what transmits the virus, so with an outbreak, be cautious about things like kissing the face around that area. Since it's in her eye, I imagine it's less likely there's going to be a lot of contact going on. But babies don't always have the best sense, so just make sure she and others aren't prodding an outbreak.

Treatment for ocular hsv is usually about reducing inflammation/discomfort, and addressing the virus. Both topical and oral antiviral medications may be used for this. Steroid drops for the eyes may cause hsv outbreaks (this is because steroid drops weaken immune function), though they can be/are used alongside antiviral drops to treat ocular hsv as they are useful in reducing inflammation/preventing scarring. If there is any abrasion or ulceration on the surface of the eye, then they might put a "band-aid" contact on it and prescribe antibiotic drops. This keeps it covered and prevents secondary infections.

Once your daughter is older, you may be able to recognize a possible outbreak if she says it feels like there is something in her eye or it feels scratched. Ocular hsv isn't a huge deal medically for most people, but obviously it can be pretty bothersome. Your daughter may have more trouble while she gets her immune system in shape, unfortunately babies are a little behind in that area.

Hope that helps!

[Sgastang]

On 16/03/2017 at 0:31 AM, Cas9 said:

Just curious; what do you mean in her left eye? That implies the virus has infected her eyeball itself OR the inner lid/s. So is that what you mean or is the infection on the outside surface of the lid/s or off to the side a bit. I mean, where EXACTLY is the location of the infection and how does it manifest itself; i.e. a sore/blister?

She had a coldsore on the top layer of her left eye ball. They couldn't specify exactly how it was transmitted but thought it was transmitted through saliva and touch from someone with an active outbreak. She has only had the one coldsore thus far 

[Cas9]

8 hours ago, Sgastang said:

She had a coldsore on the top layer of her left eye ball. They couldn't specify exactly how it was transmitted but thought it was transmitted through saliva and touch from someone with an active outbreak. She has only had the one coldsore thus far 

So I'm assuming it's on the white of her eye, not the cornea. And no vision problems?

[Sanguine108]

On 3/17/2017 at 1:04 AM, Sgastang said:

They couldn't specify exactly how it was transmitted but thought it was transmitted through saliva and touch from someone with an active outbreak. She has only had the one coldsore thus far 

Infants are constantly putting their hands in their mouths and touching everything.  I wouldn't be surprised if she gave it to herself/autoinoculation.

[WilsoInAus]

Well it would surprise most people as this has not shown to be possible. Can you please cite some sources?

[Lisajd]

Just out of curiosity but I'm also sorry for your daughter's condition because that could be possibly quite painful on the eye.

Is it possible that she sheds from other areas like the mouth which would mean she is contagious as well from the mouth

[Sgastang]

On 19/03/2017 at 9:02 AM, Lisajd said:

Just out of curiosity but I'm also sorry for your daughter's condition because that could be possibly quite painful on the eye.

Is it possible that she sheds from other areas like the mouth which would mean she is contagious as well from the mouth

Thanks, unfortunately I am not sure. We have a paeds appointment next week so I will hopefully have more information then. This was also one of my biggest concerns

[Sgastang]

On 18/03/2017 at 9:23 PM, Sanguine108 said:

Infants are constantly putting their hands in their mouths and touching everything.  I wouldn't be surprised if she gave it to herself/autoinoculation.

3 week olds aren't generally that active.. 

[Sgastang]

On 18/03/2017 at 0:34 AM, Cas9 said:

So I'm assuming it's on the white of her eye, not the cornea. And no vision problems?

No, its located on the cornea, she does have a scar but unsure if there is vision loss at this stage. 

[Cas9]

2 hours ago, Sgastang said:

No, its located on the cornea, she does have a scar but unsure if there is vision loss at this stage. 

I didn't see you make any references to an eye doctor, or maybe I missed it. If there's scarring on the cornea itself I would think it would have at least some affect on vision. I suppose it depends on what part of the cornea and the extent of the scarring. For example, if the scarring is in the middle of the cornea and extensive, that would have more of an affect on vision then if it's along the edge of the cornea and less scarring. But I'm not an eye doctor so it's just my opinion.