And Another Thing

Hope has had some stomach issues since coming home. Almost every time she eats, she goes straight to the bathroom for a while. She says her stomach seems to be really sensitive, and hurts fairly often, especially after eating. Side effects of all types are possible with new meds, and most pass within a few weeks, so we figured that as long as it's bearable, we'll wait it out for a while. 

A few days ago, Dad heard her throwing up. He said something sympathetic about her stomach bothering her again, and she denied it. He said that he could hear her throwing up, and she insisted that she wasn't. That's when it clicked that we had been overlooking a problem right under our noses. 

I didn't give Hope a chance to deny it. I just said to her, "Tell me about the throwing up." She looked away, and simply said, "I'm sorry." She says it started partway through her latest hospital stay. According to her, it isn't that she's unhappy with her body, but she was concerned that she soon could be. The antipsychotic she's currently taking, and the one she was on for about six weeks before switching, cause weight gain. It happens in a pretty large number of people, and it can be a significant amount of weight. (Around 40% of people gain more than 7% of their starting body weight, often very quickly. About 7% of people will gain more than 15% of their body weight.) It's the biggest downside to these meds, as it can lead to other health problems. It's all a matter of risks vs benefits, though, and she is definitely in a situation where it's worth it to take the chance. She knows of this side effect, and has been counseled about healthy diet, staying active, etc. It seems that, rather than follow that advice, she came up with her own way of controlling it.

I can't believe that we managed to overlook this. She's a twelve year old girl with a psychiatric illness. She just came from a place where she was with other adolescent girls with psychiatric illnesses, which is exactly the population where eating disorders live. If she hadn't already thought of purging, she absolutely would have come across it there. She came home running to the bathroom after every meal, and I believed her when she complained that her stomach had been bothering her. I feel like we should have caught it right away. I'm trying to give myself some grace, though, and just focus on the good. We caught it just four days after she got home, and within a couple weeks of the onset. It wasn't long enough to cause any physical damage, and hopefully wasn't long enough to become really ingrained in her. 

For now, we're preventing it with supervision. She is no longer allowed to close the bathroom door -- it has to be left open enough for us to hear that she's not purging. I didn't want to take that from her, because it feels like a violation of privacy, but that's where we are right now. It's necessary, not only from the standpoint of it being unhealthy to throw up her food, but also because she takes meds. We need to know that her body is receiving all of the medication she's prescribed. 

I feel okay about where we are right now, I guess. We talked again about recognizing when she's hungry (because the meds often make her think she is), how to choose healthy snacks when she needs to snack, and how important it is to stay active, even on meds that decrease her overall energy level. She has been showing effort in eating healthfully -- asking my opinion about snack choices, and asking about portions at meals. She said that she plans to start running again, like back in the spring, when she was training for a 5k. It seems like she's trying to learn how to handle this all in an appropriate way, and I'm proud of her for that. She's never really had to worry about this stuff before. We've talked about health and nutrition, of course, but she seems to have a naturally light appetite and naturally high metabolism. Having to fight for what has always come natural to her is just another thing that this illness has thrown at her, and I'm proud that she's showing effort in managing it.

For those of you who are praying for our girl, please add her physical health to your prayers. She appears to be physically healthy, so it's easy to overlook that as a concern. The meds she's taking can add significant weight, increase things like diabetes and elevated cholesterol, weaken bones, decrease white blood cells, etc. We need to pray that she doesn't harm her own body, but also that she sees as few side effects as possible from the meds that she needs to save her life. Your prayers mean the world to us, and we know that they are helping. 

Home

We brought our girl home a few days ago. I apologize for not updating sooner, but I've been pretty sick for almost the last week. (I currently have a very painful, swollen throat, with lovely white patches. Eew.) I had to take the little man and drive to Hospitaltown so we could be near Hope, and I had to get through her discharge and return home, and manage all that goes along with that. Anything that wasn't necessary, though, had to be backburnered, while I tried to juggle illness and daily life. 

Hope has been home for three days, and overall, it is going well. Her mood has been pretty stable. There have been some down times, and those times can be very low, but there have also been more ups than we've seen in a while. I don't know if one of her new meds is starting to make a difference, or if we're seeing a high from being home after almost two weeks away. Time will tell.

There are some things that are currently looking good. As I mentioned, she seems fairly stable the last few days. When she did have a really rough patch a couple of nights ago, she asked if we could go for a drive. This is huge, because she finds it very hard to ask for help, and letting me know that she needed a change of scenery to try to break her mood is a good step. Another positive is that she was able to feel better after a couple of hours, rather than having to just hold on and hope the morning brought a better mood. She has been hugging us, rather than just standing stiffly if we try to hug her, she has initiated some random hugs, and she has been saying that she loves us when we say it to her first. It's been probably six months since she stopped hugging or saying she loves us, and it is so nice to have that back again. I don't know if she's feeling somewhat better, or if she's just happy to be home, but either way, it's a good thing. Lastly, we have been pleased to see her enjoying some activities that she used to enjoy. For a couple of months, she often couldn't read, watch TV or movies, play video games, craft/build/create, etc. She wasn't saying that directly, but she would try an activity, and then quit after a couple of minutes, because she clearly just couldn't enjoy it. We may be the only parents in the world who celebrate video games and TV watching, but we have been pleased to see that she is doing those things, and seems to be finding some enjoyment in them. I understand, of course, that this list of "good things" are based on only a few days of observation. We may just be seeing a few good days in a row. We still celebrate the good, though, and hope that we are seeing the beginning of an upward trend. Even if not, we are happy to have good days with her.

Of course, there are still things that don't look so good. In the long-term, there is the uncertainty of such a serious mental illness. Especially given the early onset, and especially because of the psychosis, we don't know what the future looks like for her. Because the onset is recent, we don't even know that we've seen the whole thing yet. We may still be looking at the tip of the iceberg. In the present, and more immediate future, though, we're looking a few other tough things. One is the fact that her age may make maintenance difficult. The huge hormone changes that happen during puberty and menopause make those times especially difficult to control. It can be difficult to nail down a medication (or med combo) that works, when a person's body chemistry isn't stable. The other big, bad, ugly thing that makes her situation difficult and scary is that she isn't necessarily trying to get better. She feels like this is who she is. She understands that this type of mental illness has an organic cause, and is something that is technically "wrong" in her body, but she still insists that it's who she is, and shouldn't be fought. She says it's not fair to compare it to a physical illness, which of course should be fought, because a mental illness is all about who you are, how you think, how your mind works. It's one thing to say that a person's kidneys don't work right, or that their thyroid is malfunctioning, but it's a very different thing to say that a person's brain/personality/sense of self is wrong. When we tell her that it's not normal to want to hurt someone just for the fun of doing it, she hears us saying that it's not okay to be who she is. Despite all of our efforts to find a way to make her understand that these thoughts and impulses are not her, that they're what is stopping her from being her true self, she is still not in agreement. We are telling her, of course, that no one is saying she's bad or passing judgment on her. But she says that if we tell her that medication is supposed to take away parts of what she's currently feeling or thinking, then we're saying that Hope is not okay, and that only Hope-on-meds is okay. The meds are helping with the violent thoughts themselves, but not her view of them. She estimates that those particular, violent thoughts are present in her mind less than half of the time right now. This is down from being a constant presence. However, if you ask her, she still says that the meds are suppressing a part of who she is, rather than embracing that they're helping her. She has never been non-compliant with her meds (and we do watch her take them), but she says that if she were an adult or able to decide for herself, she might choose not to take them. It is very difficult to help a person who is not trying to get better, and it is terrifying to think of what the future looks like if she doesn't change her current view. I pray that medication and therapy will begin to change the way she thinks enough that eventually she will come around to seeing the help as something to embrace. Thinking of what is down the road if she continues to feel the way she does is just too much to take, so we'll continue to take it one day at at time.

I wanted to write a balanced update, but I don't want this to end on a negative note. As always, we have hope. And, most importantly, we still have Hope. I don't know what tomorrow will bring, but I know that today was a good day. Her mood was mostly mellow, and all well within the normal range of emotions that the average person sees in a day's time. Maybe one of her new meds is going to be more effective than the last ones, and we're seeing the beginning of that. Maybe not, and we're just seeing a couple of pretty good days. Right now, I'm just going to celebrate the good days. I wasn't three hours away from my child today, with just a ten minute phone call. I didn't spend my day in a hotel room, waiting for the hour and a half I could see her. I spent the whole day with her, at home, where she belongs. Not only that, but I saw her smile, and didn't once have the helpless feeling of watching her struggle with unbearable pain. Right now, that is enough.