The Littlest Little had her MRI last Friday as we all know. Today I was finally able to talk to her CMV doctor to discuss the results. It would appear that everything is the same as it was before. The ventricles are still large, there's still a brain bleed and still extra fluid. This didn't really help the husband and I with our decision that had to be made.
Our little one qualifies for the drug study. It's for a medication that is now in the oral liquid form versus the IV form. They would have her on the medication for 6 weeks then the medication or placebo for 6 months. This medication is used to control the CMV infection and possibly prevent the hearing loss that is common among the kids (I'm repeating myself - I know, sorry).
A couple concerns that I had: in animals, it caused shrinkage of the ovaries (they worded it much better), infertility and cancer. The doctor reminded me that those side effects were never seen in humans, just the animals. Another concern was are we going to be unnecessarily medicating our child? The doctor says that the medication does help with the hearing loss prevention as well as controlling how much damage the disease will do. The only side effects really are low white blood cell counts (the ones that fight infection) and low red blood cell count (they help with clotting).
I talked it over with the husband (and my mother in law if I'm going to be completely honest here). We talked about the pros and the cons. For me, it came down to the doctor saying this: Children who are born with congenital CMV are 10-15% more likely to develop hearing/vision issues as well as developmental issues. All things that the drug in this study help to "contain". Because of our daughter's restricted growth issue, she's at a higher risk for these problems. Obviously the doctor would want people to participate in this study but still, I needed his opinion. I asked him if it was his child or a relative/close friend's child, what would he do/recommend. He said he absolutely would do it.
I don't want to medicate her unnecessarily but then too, I don't want to opt out of the study and have her go deaf at two years old. I would never forgive myself for not giving her the chance. Does that make sense? Gah!
SO....bottom line.....we've decided to put her in the program. At least we can pull her whenever we want, everything is paid for and if she starts having low white/red cell counts, we stop the medication and it fixes itself. I feel much better about this now that we've talked to the doctor and gotten the details on the study itself.
Thanks for listening Internet. I heart you. And you. You too. Thanks =0)