Monday, April 25, 2011

Wrong Again

It's true that Kyle and I are the premier worldwide Collin experts, but sometimes it feels like that's not saying much. There are a lot of things to be wrong about when it comes to Collin.

Though we initially thought we saw a positive change from our agreed-upon plan of action, things actually continued to get worse through Saturday morning. Collin was retching almost constantly no matter what we did and he was just not himself even when he wasn't retching. No smiles, no interaction, and 3 naps a day. Something was nagging me in the back of my mind and I finally mentioned to Kyle the very rare side effects of starting growth hormone: headache and nausea from increased brain pressure (sounds scary but is really just a brain fluid issue). I had called the endocrinologist the night we started growth hormone to discuss this very side effect and he had assured me that it was so rare that it was almost a non-issue, especially since almost every child who had experienced it had been on some other kind of medicine that contributed to the issue. Collin is on no medicine, BUT he has a track record of being very sensitive to big changes in his body (it took him weeks to recover from the transition to the ketogenic diet) and of doing whatever doctors claim to be rare or impossible (which can be a good or a bad thing). We looked back and recognized that the sleepiness and lack of interaction (which, with Collin, is all we have to go on for a pain indicator) and increased retching had started about 4 days after starting the HGH and that nothing else had changed.

We hadn't wanted the problem to be the growth hormone. And Collin had been trending toward more retching before we even started it, so there's that. But the fact is that it's just hard to admit that something you've been waiting and fighting for for so long because of how much it's going help is actually causing harm.

So, I called the endocrinologist Saturday morning and explained our situation. He was also reluctant to admit that it was the growth hormone, but conceded that since nothing else had changed, we need to act as though Collin's symptoms were related to the HGH. He recommended that we stop giving the shots and call when we got a better idea of whether or not it was helping. With that decision made, I called Dr. Awesome to discuss how to manage Collin's ketogenic diet while he was so pitifully sick and waiting for relief. Dr. Awesome suggested that the ketogenic diet was of secondary concern to keeping Collin hydrated and getting him feeling better. He also said again that he feels that, though the ketogenic diet has helped Collin, it is not solely responsible for his seizure control; rather, he is outgrowing his epilepsy. I'm not sure I agree with this, but it certainly was good to hear when we were facing possibly losing ketosis. So, we stopped all food and put Collin on a very slow rate of water and pedialyte. He started to improve almost immediately and retched less for the rest of the day. By the evening he was doing well enough that we have him two small meals to keep his rising blood sugar down and his falling ketones up. He tolerated them well, slept well that night, and woke up smiling and retch free Easter morning.

The good news (as far as I know, at least) is that if you restart growth hormone at a much lower dose and titrate up to the appropriate dose, these side effects go away. I'll be talking to the endocrinologist later this week to work on a plan for restarting. If you're wondering why they don't titrate up anyway for the few kids who do react in this way, I'd like to pat you on the back and say, "Good question."

The bad news is that apparently Collin also reacted to coming off of the growth hormone all at once. After being so lethargic and sick feeling for so many days, he was a new man, which was mostly good -- until bedtime. Then he turned into a wild little squeal monster who could not be calmed down no matter what we did and didn't finally pass out until sometime after 5 in the morning. Naturally, that was the morning my neighbors had a jackhammer and demo crew at their house at 8 in the morning. Oh well. We're still thankful that he's doing so much better. He didn't retch one single time yesterday and today has been good so far, considering the utter exhaustion, both from last night and from the last week. We have our fingers crossed for a better night's sleep tonight and maybe a few boring days so we can catch our breath.


  1. Praising God for Team Collin's group effort in getting things trending toward "normal." Also wanting to jump up and down about the idea of Collin growing out of seizing...! Praying for some peace of mind and rest for the best manager and personal trainer Collin could ever ask for :)

  2. I believe you deserve an honorary PhD for your work studying Collin. I am positive you have enough for a dissertation. I'm crossing my fingers and toes for a lot of boring days in the near future. And for a good night sleep for all involved.

  3. Yay!! I'm SO GLAD the retching is better. Scary for EVERYONE, but I know it must be much harder when you're the mommy. Great job on figuring things out and don't ever forget how much we love you and how often we pray for you.