We contacted the pediatrician who told us not to worry. I couldn't help but worry. Finally we convinced her to test it again. It was still hovering around 15. I asked if his MCADD could be to blame, she said no. She said we would test again in a week. Meanwhile I contacted the genetic counselor and asked her if his MCADD could be causing the elevated bilirubin. She thought that was probably not the cause but could be the reason that he can't get rid of it. Here we are one week later and his bili level has not really budged. According to the phone call from her nurse, the pediatrician is "very happy with the results and she wants to test him again two weeks from now."
Momma is not so happy with the results. Last night as I laid in bed, stomach turning with anxiety, I decided that I needed a second opinion.
Today I took my little guy into the family practice doctor that I see. He was awesome! He did not make me feel like a paranoid parent. He also said that there was no reason not to test him for anemia and liver function. We are awaiting those results and hoping that they come back negative. He also said that he agrees with the genetic counselor. It would make sense that if he has a liver enzyme disorder it might be harder for him to get rid of it since bilirubin is removed by the liver. However our pediatrician says that because infants have immature livers the bilirubin is removed by the GI tract. Argh!
I am feeling better at least we will know for sure that nothing else is the cause. I am praying that everything comes back negative. It just means that I have to patiently wait for the jaundice to go away. My husband has been having me stick the poor little guy in window to soak up the sun, someone told him it helps.
Our little sun bather
Keep on pushing. Keep on questioning. Keep on fighting.
ReplyDeleteThis is just the beginning, Mama Bear (because that's what you are!). You are your son's best and sometimes only advocate in a medical world that knows little to nothing about his disorder. I have stood outside of the ER room being "that" mom because the ER doc didn't see the need to light a fire under his own butt to get my son fluids. Why? Because he LOOKED fine! He always "looks" fine but if you wait until he no longer "looks" fine, you're too late & he's in a metabolic crisis.
For the record, you have added another stinkin' cute baby boy to the FOD club!
Dana-
ReplyDeleteIt is sad that we have to fight. We received a letter to give to the ER. I imagine that you have one too. I would hope that the physicians would just read it and act. How many times have you had to take your little guy to the ER? That is my biggest fear. I know it will happen though.
My little girl also had high bilirubin counts when she was a week old. They stabilized later, and our Metabolic doctor didn't seem to concerned about it. For what it's worth, my husband has had high bilirubin off an on his whole life. It hasn't affected his life in any way, it just shows up on blood tests sometimes when he has his regular check-ups.
ReplyDeleteGood luck! And yes, keep advocating for you kid, you know what's best for them.