I've been reading more stories on StopCMV.org and I haven't seen any stories of children treated with Ganciclovir, so I wanted to share what our doctor told us and our experience with it.
First, I don't know when I got CMV and Gili couldn't get a definitive diagnosis of congenital CMV because she was tested at 5 weeks of age. I was hospitalized with the H1N1 flu at the beginning of my 3rd trimester and given Tamiflu. I suspect there may be a link between that and the CMV. In a previous ultrasound they said my fetus measured in the 95th percentile. After the flu I was measuring smaller, even though I hadn't lost weight. I didn't believe my midwife when she thought my baby would be around 6 lbs, because my other kids were around 7.5 lbs.
The diagnosis was made in Schneider Children's Hospital in Israel when she was 2.5 months. (I will post all about the Israeli health system in my next post.) It was based on the positive 5 week urine culture and other symptoms, including enlarged liver and spleen, brain cysts, and a scar in her left eye, suggesting a virus in-utero. This was at the end of a whole day of testing that I originally thought would only be a brief consultation with a doctor. (Luckily, I was still trying to nurse at the time, so I only ran out of diapers at the end of the day!) The tests were orchestrated by Dr. Haimi, an infectious disease specialist. (I think that's his first name, common even with doctors for adults.) He was so nice and considerate, and only spoke English to the other staff when I was in his office. I went back to his office between all Gili's tests, then finally met with Dr. Haimi and Professor Amir together. Prof. Jacob Amir is either the head of the Infectious Disease department or Pediatrics, I'm not sure. He does a lot of research with CMV and told us about the range of treatment time frames. He said that with the evidence we should treat for congenital CMV, even though we could never be sure. We still didn't have the results from the BERA (hearing test).
Prof. Amir said that he has seen the best results from treating for a full year. He continues to remind me that he has never seen hearing deterioration after beginning treatment. Gili began comparatively late, but I tell her, "Don't be special." I probably should have been shocked and devastated by the weight of the day, but I think the most shocking thing at the moment was, "Get some sleep, I'll see you at 8 am tomorrow." So I went home, loaded up my MP3 player, prayed for WiFi in the hospital, showered, and otherwise prepared for at least a week in the hospital. All I really new about the treatment, was that before Gili was tested, her pediatrician in America said that it was not an easy treatment and if it was positive we would meet with a specialist to decide whether to treat. I asked Prof. Amir a lot of questions but I couldn't uncover any major risks. He didn't seem to be posing any choices to me. It was like, if she hears now, we want to keep it that way, this is what we will do. I never posed the option of not treating.
Gili would have blood tests every week and we could lower the dose if it was hurting her. I use laymen's terms because I don't know exactly what to worry about. Now Gli's dose is lower and she only gets her finger pricked once a month. I check her results online and Prof. Amir explained what I need to look for. On the line that says "NEUT.abs" the number should be above 1. If it's between 0.5-1, I need to have another test a week later, if it's below 0.5, I call him. Lately it's been over 3. I still don't completely understand the risks, and I don't know if the treatment had anything to do with her bronchiolitus and pneumonia two weeks into treatment, but I hope with blog will be a story of Ganciclovir success.
When we got into the hospital she didn't actually get treatment until 8 p.m. because it takes a while to get the medication. We were told we would be there at least a week, but it was aggravating, because we were only waiting until the anesthesiologist had time to put her PICC line in. There were several days we were told "maybe tomorrow" or "maybe today" but they never came to tell me what time she needed to stop eating. It wasn't until the morning of the procedure that the nurse said, "good luck" in a way like she needed it and I started to worry. She said it was hard to put a pick line in a tiny baby. Gili finally got the PICC line after we were there about a week, I was so happy and relieved to be with her as she was waking up. We had to wait to get all the papers in order for her home treatment (see picture in second post). A nurse came to the hospital to train us to use the PICC line. I had to "pass" in order to be sent home. It was a lot to take in, but the nurse was very nice, passed me, and gave me her cell phone number and e-mail address in case we had questions.
If you're interested, this is what I remember of the procedure: Take ganciclovir out of the fridge about an hour ahead. Wash hands, put on mask, open sterile field (blue paper), open tubes and gauze onto it without touching, squirt alcohol on gauze. Put on gloves (there's a special sterile way to do this.) Wipe all the places where something opens 3 times, each time with a different piece of gauze. Hook up the lines, valves and saline. Slowly push through saline. Hook up ganciclovir syringe and put syringe in battery operated devise. Set devise to deliver Ganciclovir over 1 hour. Remove mask and gloves and take a deep breath and wait. Then repeat sterilization to remove ganciclovir syringe, slowly push through heparin, and close everything up.
We had to do this twice a day at specific time intervals. Once I got good, I could do it in almost any clean place. I could leave the tube attached so she could stay asleep in her stroller and the sterile field could be a meter away on a table. The battery devise also allowed us to go out, for instance if she had an appointment during the time I needed to give her the medication.
The intravenous treatment lasted 6 weeks and she needed her dressing changed in the hospital every week. Finally her PICC line was taken out as soon as our pharmacy secured the oral Valcyte - valganciclovire. She started with two doses a day at specific times. Now she takes one dose every morning. We have to put in in her bottle with a little formula because she gags on anything that doesn't come from a NUK nipple.
This post is purely our story, and every case is different. However, I don't understand why American doctors don't treat more often before children loose their hearing. I hope I will read more stories in the future of Ganciclovir success.