Well poop. I didn’t even think about this. Of course there is glycine in food. Glycine is an enzyme that makes up protein, so of course it is in food. And then if I eat it it’s in my breast milk, which Kai eats. Which then effects his glycine levels. Which he can’t process because he has non ketotic hyperglycinemia.
Now I’m trying to figure out whether to avoid all the things, and how that will effect his levels at all. I’m frustrated that I found out about it from the FB group rather than our metabolic consultant (although: looking back on my notes, he did mention a ‘glycine diet’… no explanation on what it was or its significance or if we should be doing it, and if so the best way to implement it… gah).
Honestly, I constantly feel like I’m being blindsided by things I feel I should know, especially if they may help Kai. There is not enough time in the world for me to research all the things!
Sad face. It’s so discouraging. I had this idea of what it was like to be a Mum. It didn’t include marathon research sessions at three in the morning, meds a kajillion times a day, all the physio exercises and all the medical appointments and hospital visits and scary mystery future. Honestly, I feel like having a typical baby would be a walk in the park at this point. Hard, but not this hard.
I guess we plow on ahead. Every day we try accept the hand we’ve been dealt… the best we can do will have to be enough. Even if it means I’m learning things from facebook groups (honestly, thank goodness for the other NKH parents, I don’t know what I’d do without them, even if they are strangers on the internet).
Knowing that I’m being Miss Negative Nancy and it takes at least five positives to strike off a negative, here is a positive thing. I’ve successfully mastered the giving set, aspiration and feeding through a tube. It’s a small thing, but at four am when you’re determined not to go out to the nurses station and on the sixth time you finally get an aspirate that’s not super black? Dance parties and high fives all round!
PS – if anyone wants to help me research some stuff, I’d be super grateful. You don’t need a medical degree or anything (I don’t have one). If you have fifeteen minutes and an internet connection, I have a list of questions that I could use some help with. Starting with glycine in food, and whether a low glycine diet would help Non Ketotic Hyperglycinemia kids, and what foods are high in glycine, and what foods to avoid. Email me – elly[dot]gedye[at]gmail.com