Since it’s nearly a year and a half later, and we’re still having a a really difficult time getting Emmett’s seizures under control, we’ve decided to try the ketogenic diet instead of more medications. If the diet doesn’t work or Emmett doesn’t take to it, it’s back to giving new meds a go. You can read more about the diet here. Essentially, it’s a very strict, very high fat diet (think 15% ground beef, fried in butter, served in heavy cream… not kidding) and a very strict diet. Have I mentioned that it’s very strict? It’s imperatively strict. The idea is to get the body burning fat for energy which eventually puts the body in a state of “ketosis”. For whatever reason, a high level of ketones helps reduce seizures. This is so strict, that he absolutely cannot have anything other than what will be assigned for each meal, and each meal must be finished in it’s entirety for it to work. Everything needs to be weighed and measured and portion size will depend on his weight. We really don’t know if this will work or not, mainly because it’s hard to get a kid to eat, literally, every single drop. Especially when he’s teething, not feeling well or is simply being a kid and won’t eat. The dietician said, “He needs every drop. That one drop could contain trace amounts of fat that he will need. Otherwise he’ll be deficient and the diet won’t work.”
No pressure, eh?
Not sure how or when we will be starting him on it. We were supposed to meet with the pediatric dietician today, but it seems like Emmett is starting to get sick. He’s been up coughing for the last two nights. No idea how he got it, we’re always very cautious to keep the sickies away. Especially when we have important appointments coming up or when he’s on prednisone. I’m hoping he won’t need to be hospitalized to start the diet, as apparently some kiddos need to be watched really closely. We’ll find out more when he’s better and can meet with the dietician. I should also take this time to warn you all that if you try to feed him anything at all, I will not hesitate to break one (or two) of your fingers. Just a lick of sugar will result in cracked bones!
I had spoken to the dietician quickly over the phone last week because I had a few questions that had been on my mind. Emmett still nurses and I wanted to know if it was possible to still nurse him while on the diet.
She said no.
I’m not sure what I was expecting to hear. I guess I was expecting to hear that it would be fine to continue nursing him, because as soon as she said no I could barely control the floodgates that burst open. I actually surprised myself over how upset I felt. I kept asking myself why I was so upset and what was wrong with me for being so upset. Especially if this diet will help reduce his seizures. For a while I couldn’t figure it out and then it hit me. Nursing him was one of the things that made me feel like I was a “typical” mom. It was something I could relate to with my other friends who also nursed. Because, in all reality, there isn’t much I can relate to with my friends who are also moms. It’s a bit alienating and can be really hard to listen to my friends talk about their little ones. But nursing! Oh, I could relate to the growth spurts, the teeth coming in (I’m sure you know where I’m going with this one), funny nursing positions, clogged milk ducts, feeling like a breast-buffet for the first few months… that stuff, I can relate to and talk about easily. And I had worked really hard to learn how to breastfeed. I didn’t have the luxury of nursing a newborn in my bedroom. I had to learn while he was hooked up to tons of wires in the NICU, in countless doctor’s offices and during numerous trips to the ER. I was so determined to do this for him, and I did. I’ve been so proud of myself for sticking it through regardless of everything that’s been going on. And being told I couldn’t was like dismissing all of my hard work, and to some extent, removing that social aspect of motherhood that I relied on when I spoke with friends.
But, I’m feeling ok now. It might be a different story when I nurse him that one last time, though. I really wish he could have completely weaned himself from nursing. Granted, he’s down to nursing only in the mornings and at night, so he’s been gradually weaning himself which makes this a bit easier. But Emmett is always showing progress, so I’m sure there will be more things to relate to with other mamas down the road. Kinda like how he’s been getting up into the crawl position A LOT lately. So, I already have something to relate to with other mamas!