So in my last post I ranted and raved about all kind of junk…I feel like I was a bit all over the place, so excuse me if this feels disorganized too. But this mama is tired.
Anyway, I mentioned that things were getting better with Ruby. And they are. (That or we are just getting used to the crazy…) But we have since put her on Nutramigen, and seen a huge improvement in her overall fussiness and general discomfort.
I also mentioned CAH. It’s not something I knew a thing about prior to my pedi bringing it up. But apparently it is something that the newborn screen looks for. Her first screening was normal. Her second came back with higher levels and her follow up was even worse.
What is basically means is that her adrenal glands are not functioning properly thus causing all her hormones to be out of whack. If left untreated she could have serious reactions to stress and illness as well as having early puberty, growth issues and fertility problems later in life. It could be why she has been so fussy and irritable at the current moment.
However, she has no outward signs of the disease (which include malformed sexual organs and general toxicity/sickness). She is gaining weight and thriving- seemingly typical. Also, her bloodwork was initially run for the wrong test and drawn from a heel prick (heel pricks include tissue, which could elevate the levels in her blood that would indicate CAH).
The third set of bloodwork put her at a moderate risk for CAH…if she has it, it could be a more mild form…it could be “classic CAH” or it could be nothing at all. Confusing, I know.
We went to TCH in Houston and are no closer to an answer. We do know that if she does have it and we ignore it, there could be serious and even fatal consequences later.
We will be having a two hour test on Monday that will measure her hormone levels and how she responds to medications introduced to her body. This will tell us if she has CAH and what type she has.
Not looking forward to it, but we need to know if this is something she has. For the most part it is not a big deal- just like my hypothyroidism. You manage and treat it.
Send up a prayer- she’t not an easy stick and it’s going to be a long day for all involved!