Help with toddler HSV?

[Touley29]

Hello Ms. Warren,

Thank you so much for taking the time to read this. I am desperate for some answers for my child. Here’s our situation:

.Dad-positive for genital HSV2 (confirmed with PCR swab-has had for many years)
.Mom (me)-has never had an outbreak to my knowledge. Antibody serum negative in 2019
.Toddler-has never had an outbreak to our knowledge (negative on 4/4 PCR swabs but positive HSV2 on Antibody serum twice)

First test: IgM-negative
            IgG-1.30

Second test: IgM-negative
             IgG-2.82

The reason doctors were testing was because they suspected child had herpatic gingivostomatitis (hence the swabs) but then later changed their diagnosis to Steven-Johnson’s Syndrome.

Thank you. Any input is greatly appreciated! We need to know what to do with this information of getting 2 positive Antibody serum tests with 4 negative PCR tests.

[Terri Warren]

I am absolutely SHOCKED that any doctor would do a herpes antibody test on a child. We’ve known for a very long time that at least half of the positive in children are false positives. In addition, the CDC says never to use IGM tests and the Mayo Clinic lab discontinued using them in 2019 and both Quest and LabCorp are going to stop using them in 2022 due to high levels of false positives.

This has not been handled well and I’m so sad for you to have gone through this. Please disregard.

Terri

[Touley29]

Thank you for your input.
Yes I agree that it was not handled well. It was honestly the worst experience of our lives. Being in the hospital for 2 weeks with my 2 year old who they finally diagnosed with SJS after they couldn’t figure out anything else.
I’m not sure why they weren’t satisfied with FOUR negative PCRs. It’s like they were so confident it was herpes they just had to do a blood test. They basically told us, “Child does have herpes but is not having an active outbreak.”
Its absolutely infuriating. It has caused us so much stress and heartache and depression. It could have destroyed our marriage because when a child has HSV2 you automatically assume child abuse.
All of this because some doctor “wanted to be extra thorough”.

[Terri Warren]

I’m so terribly sorry that you had to go through this. Clearly the doctor you saw has inadequate knowledge about antibody testing for HSV that they would order this for a child. I’m horrified.
I’m very glad that this was resolved for you but so sorry you had to go through it.

Terri

• This reply was modified 9 months ago by Terri Warren.

[Touley29]

I truly want to believe you but it seems like more than just coincidence that:

Child tested “positive” 2 times AND
IgG was trending upwards AND
Dad has HSV2 AND
the test identified HSV2, not HSV1.

I’m trying to remain hopeful.

Do you think a Western Blot would give more clarity? I feel sick inside thinking about them trying to get more blood from my 2 year old again.

Is this a possible scenario in which my child could have obtained HSV2?
-If I performed oral sex on my husband then I acquired oral HSV2. Then if I kissed my child then they got oral HSV2?

I like to do a blood test periodically for the purposes of family planning. Do you think I could assume if I test negative that my child is also negative? And if I test positive then child is also positive?

Thank you.

[Terri Warren]

I would say that the only circumstance under which your child would actually have HSV 2 is molestation. There is no other way, other than you passing it to them at birth, that they would have HSV 2. If your child was healthy at birth, then I think that eliminates that possibility and I seriously doubt that your husband would be at fault here or someone else, since an alternative diagnosis has been obtained. It is completely normal that the IgG index value would vary, but are you saying that a second test was done, a second blood draw?
You testing positive would not equate to your child testing positive.

You need to speak with someone with real expertise in the area of pediatric HSV testing. David Kimble at the University of Albama at Birmingham is an expert in this field.

Terri

[Touley29]

Ok thank you for this information. I will try to locate Mr. Kimble’s contact information.

So yes, a 2nd blood draw was done about 10 days after the 1st one. When the IgG level came back higher on the 2nd test, the Infectious Disease specialist said this is “what we’d expect to see in a HSV positive individual”.

[Terri Warren]

I really don’t know what else to say here. I so hope this gets resolved.

Terri

• This reply was modified 8 months, 2 weeks ago by Terri Warren.

[Touley29]

So would you recommend getting a Western Blot for our child?

Do you agree with the statement the Infectious Disease Specialist stated, “We would expect to see a rise in IgG levels in an individual who is positive for HSV”?

[Terri Warren]

I’m going to go back to basics. HSV 2 is a sexually transmitted infection. If there is a concern that someone has molested your child, then a western blot might be appropriate. If not, we know that 50% of IgG tests in children will be falsely positive. That’s why we don’t do antibody testing on children. I know this situation has been very disturbing for you and I do understand. I hope you reached out to Dr. Kimble

IgG test results can vary greatly over time in the same person.

Terri

• This reply was modified 8 months, 1 week ago by Terri Warren.

[Terri Warren]

I asked Anna Wald, head of the Division of Infectious Disease at the University of Washington about your situation. Here is what she said to me:

“They could certainly reach out to me to discuss. I agree with you that given the situation, including the negative PCR’s x4, this is not HSV-2 infection. I am concerned about the use of the antibody assays in young children, since some of the assays have been shown to have high proportion of false positives in that age group – even higher than in adults. So in this setting, without exposure, with a pcr negative results, and a low positive, this is not a test result that should be relied upon. Altogether, I do not think that an HSV western blot is indicated here – just education of the providers about appropriate use of the tests.

Hope this is helpful

Terri

[Touley29]

Thank you so much for all the help and information Terri. I wasn’t able to find any contact information for Dr. Kimble but I’m thankful that you spoke to Anna Wald on my behalf about our situation.
Again, thank you so much. You’ve given us a great deal of reassurance about this and I now know that our doctor was just incompetent.

[Terri Warren]

Here is what Anna said about your situation:

“They could certainly reach out to me to discuss. I agree with you that given the situation, including the negative PCR’s x4, this is not HSV-2 infection. I am concerned about the use of the antibody assays in young children, since some of the assays have been shown to have high proportion of false positives in that age group – even higher than in adults. So in this setting, without exposure, with a pcr negative results, and a low positive, this is not a test result that should be relied upon. Altogether, I do not think that an HSV western blot is indicated here – just education of the providers about appropriate use of the tests. ”

Hope this is helpful
Terri

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