Tonight I received an expected phone call with some unexpected news.
I met Laurie (an RN/Case Manager/Dr. Hogansons asst.) during last weeks visit with Dr. Jennings. She had come in before I took Vada to get her labs done. Laurie and I went over the basics of what I was told is going on medically with Vada and what I understood about the Methamalomic Acid Anemia.
Laurie said that she was going to call Dr. Hoganson after she received the results from that days the blood work. She was going to see if he would give a "set in stone" diagnosis. We had already begun to be told different stories and understandings of MMA. It was beginning to become confusing and overwhelming. Laurie said she had information she could give me that would help, but she wanted to make sure that Dr. H. approved.
Laurie was calling to tell me that she had received all of the lab work and had already spoke with Dr. Hoganson. Turns out Vada does NOT have MMA like we were told. After one week of daily vitamin B12 injections her B12 levels "sky rocketed", and her MA levels balanced out. What does that mean? It means that Vada is suffering from a B12 imbalance. Why? Well, more than likely, from me.
Vada is just now starting to really enjoy her solid food, and if given the choice, she would choose to nurse every time. It's just that obvious! So, the vitamins that she is receiving are coming from me, from my breast milk. Turns out that I am probably lacking B12 as well. Which makes sense. I was anemic when I was pregnant. Although, not enough for my midwife to feel like she needed to treat me for it.
When the MMA first came up and Dr. J. and I were discussing what "they" thought was happening I brought up the fact that I was anemic when I was pregnant. I asked if it were the possible cause of this, for Vada. He said no, that what we were looking at was MMA. This was coming from a conversation that he had had with Dr. Hoganson. So I wonder how it goes from one thing to another. One set in stone rare diagnosis, to another. How could you be so sure about one thing, then a moment later not?
So yeah, its frustration to have the run around with Vada's health, yet again. However, I am going to bask in the fact that with this diagnosis she will be okay. Maybe our light at the end of the tunnel is coming sooner than we thought!
We were told that I can stop giving Vada the B12 injections as well as the L-Carnitine. So, now she is only taking the Keppra and Zantac orally, and the ACTH IM once a day, (Which... we are weaning her off of!).
Now, as far as I go with the B12... I have to get some blood work to see what my levels are before anything can be done or even said about it. Typically, you have to have extremely low levels of B12 yourself, to not produce enough for your nursing child. (From my personal understanding of it.)I haven't read if having a low level of B12 could turn into an inability to metabolize B12. I haven't had enough time to check on it. I guess its just something ill have to ask the doctors about.