Congenital CMV: treatment with Ganciclivor — The Bump
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Congenital CMV: treatment with Ganciclivor

My daughter was born with CMV. She was asymptomatic. The only reason she was tested was because I got a primary infection during my third tri so we knew there was a chance she might have gotten it. We are being treated by the infectious disease department at WVU Children's Hospital. The said we can either do nothing and see if she's one of the 8% who develop hearing loss. Or we can try the experimental drug Ganciclivor which has side effects. Does anyone here have any experience with congenital CMV? Has anyone tried Ganciclivor?
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Re: Congenital CMV: treatment with Ganciclivor

  • I remember her! It looks like she hasn't posted anything in a few months. Not sure if she is on a spin off board or took a break but hopefully she is still lurking and can help you!
  • That's a tough call. I do know a few kids with hearing loss from CMV, but they were symptomatic at birth and had some other problems as well. They are doing well with CIs. (BTW- we also live in Morgantown!)
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  • Tough decision, for sure.  

    We lived in Morgantown for a couple of years.  You could always try for a 2nd opinion at the Children's Hospital of Pittsburgh.  But I guess if it's either do X or don't do X, not much another doctor could really help weighing in on.

    Making decisions like this suck, but you just have to take all of the information you have in front of you and the people who are supportive and go from there.  

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • We found out our lo tested positive, without even knowing I had it at all, right before leaving the hospital with lo. I was devastated. So I understand what you're going through. Our lo is 10wks old today and doing well. Shes had a lot of screening done with her hearing, sight & brain which all came back normal. So with taking everything into consideration we decide to not do Ganciclivor. We're trusting & believing God to take care of her no matter what the outcome may be!!!!

  • I know I'm late to this post I'm a total lurker on this board. But my 12 year old was born with cCMV. We didn't have the chance with Ganciclivor,not much as known about cCMV back then. He does have some hearing loss. He is completely deaf in his left ear withpartial loss in his right. He also has ADHD and had developmental and speech delays when he was younger. He has since overcome those delays and you can't even tell he has a hearing loss now. Thankfully all of his brain MRIs were normal.

    ETA I contracted CMV before my 20th week.

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  • My daughter has cCMV and is not asymptomatic.  She is very affected. 

     We did not choose to use the ganciclivor because of the side effects.  It drops immunity greatly which increases risk for other illnesses while on it.  We also found out at almost 6m old and that is the "cut-off" age for starting the therapy.

    I have heard from people who have tried the drug and spoke positively about its effects.

     So there is a 6 of one 1/2 dozen of another to help you make your decision...LOL

    Is she still shedding the virus?  What were her titers like for the virus?  That might help with the decision.

    ((hugs)) 

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