Saturday, April 30, 2011

Take 2

Last night, Collin started back on growth hormone after almost a full week of being happy and retch-free.

This week, I spoke with his endocrinologist, who was shocked to hear that Collin had reacted, since he is not on any medicines that would conflict. He explained that Collin's symptoms could have been from the HGH rapidly increasing protein synthesis and fluid levels in the body - too rapidly for the body to manage and reabsorb it, thus allowing it to build up in areas like the brain, which could result in crippling headaches and consequent nausea. But then, as we were putting together our titration plan to get back up to Collin's dose, he said something along the lines of, "Now that we're talking about it, I do remember a handful of adults who were treated with growth hormone complaining of nausea and general malaise when they started treatment. We eventually figured out that it was a sensitivity to the preservative in the HGH shot." I admit that I did make bug eyes out of frustration at first, but I do understand that treating adults and children with HGH are two very different things. And it made me thankful that we have at least another option to try if this titration doesn't work, since preservative-free HGH is available, even though it is slightly more complicated to draw up and a larger volume to inject.

So, our plan for now is to start Collin back at one sixth of his original dose. We'll try that for two weeks and if we don't see any adverse effects, we'll add another sixth, and so on. If he starts reacting in any way, we will stop immediately and start the process to get preservative-free HGH.

Well, that is the technical plan. The actual plan, influenced by parental spidey-sense and our observation of Collin's obvious hypersensitivity two weeks ago, is to add a transition week between each of those dose increases. So this week, we will only give him a shot every other day before moving up to the sixth dose every day. Then in three weeks, if things are fine, we will do one third every other day and one sixth on the days in between before moving up to one third every day. You get the picture. If Collin reacts while on a plan like that, we will know it has to be preservative sensitivity rather than intercranial fluid buildup, because we'll be giving his body ample time to adjust to fluid levels.

So now, even though we're not sure what we're dealing with, we just have to move forward with our next plan and try not to worry too much. Hm. That sounds like the story of the last two years.

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.

Friday, April 22, 2011

No End in Sight

It had been over a year since his last retch when Collin started retching from poop issues back in January. Things calmed down somewhat after that, but we were still having spells of retching fairly regularly. Then he got the respiratory virus and the drainage and sore throat really sent him over the edge. Ever since then, things have been getting worse and worse. Collin is now retching every time he poops (which is a few times a day), every time he needs to burp, every time he chokes on spit, and lots of unidentifiable times in between.

Retching recap for those who don't know the history or who can't see how something like 'retching' would be hard: The point of the Nissen wrap Collin got at 3 weeks old is to prevent reflux of any kind, including acid reflux, vomiting, and even burping. So, every time Collin needs to do any of these things, his stomach won't let anything out and he instead tries to throw it up. But he can't do that either, so the result is a loud, violent, kind of disturbing dry heave sound. The retch leaves him unable to catch his breath, so if he has several in a row, his face starts to turn blue. One of the side effects of a Nissen is that in some people, it seems to cause a much more sensitive gag reflex. As I said, we hadn't seen this side effect in a long time but the prolonged period of retching seems to have brought it out. So whenever Collin chokes, whenever he feels spit or food in the back of his throat that feels gross, whenever he has just finished retching and is anxious about retching again, he retches.

Think about how awful and stressful it is when someone has a stomach bug in your house and you have a good idea of what it's been like here for the past three weeks (although we don't have to worry about it being contagious). With a virus, you at least know what is causing your symptoms and that it will end soon. The mental exhaustion from continually trying to figure out what's going on with Collin and how to stop it is almost as hard as constantly jumping out of our skin at the sound of a retch, leaping up, running, venting (burping, etc. from his g-tube), and trying to make him catch his breath. My adrenaline level, which has already been running high for the past couple of years, has been through the roof. It's also hard because we feel stuck at home when things are this bad. It is extremely unnerving and scary to witness a retching episode even when you're used to it, so when it happens around other people or (the worst) in public, there's an extra element of stress involved.

Things have gotten so bad over the last couple of days that we've had to cancel everything to hunker down at home and manage the retching. This morning, Kyle and I sat down and wrote out lists and charts to try to think our way through the situation. We don't think he has a virus because of the duration of the retching and because he doesn't have any other symptoms. We don't think it's the growth hormone because he was already trending in this direction before he started the HGH. He's had every GI test available, with no resultant help or answers, and usually ends up in worse shape when he goes to the hospital, so it doesn't seem worth it to drag him out to the doctor. The most logical answer seems that the excess retching from the cold virus made his tummy and gag reflex super sensitive and neither have had a chance to go back to normal. So, we ended up deciding to slow Collin's feeding rate down to almost a drip to give his stomach a chance to rest and hopefully heal. We can't use Pedialyte, juice, or other 'sick foods' because of his ketogenic diet (the sugar would make his ketones drop and possibly trigger seizures), and we can't skip meals because it would likely send him into ketoacidosis (toxic state from too high ketones), so we have to stick with our standard blenderized meals. This plan seemed to be working this morning, but then he had a huge spell while I was writing this post.

So, Team Collin is a little run down this week. We know that it won't last forever and we'll figure something out eventually, but in the meanwhile, things are just hard and we're trying to take care of ourselves the best we can.

Tuesday, April 19, 2011

Highlight From Our NACD Evaluation Monday

"It seems clear to me that Collin has made a cognitive leap."

Monday, April 11, 2011

Getting Away

It's been a rough two weeks with Collin's virus (and Mama's consequent virus) and all of the complications that come with that. So, it was perfect timing that we had planned a weekend getaway with Aunt Tess, Uncle Kevin, and Ila to Clifty Falls and Madison Indiana. It was just what we needed and we came home rejuvenated. Here are a few highlights.