Making Some Progress

This past week has been better in some ways and worse in others. First the good news... Mary has been really good about dealing with the whole "ghost" issue. After we got the baby monitor (best $16 I ever spent), she has slept in her own room without one of us in there every night. The first few nights she still needed me to stay in there with her until she fell asleep, but that was okay. Then yesterday after school she told me that she was going to go spend some time in her room with her birds, but if she saw anything she was going to scream and run out. She went in and spent about half an hour in there without any problems. Last night she went in there by herself willingly to find a Christmas movie on tv for us to watch while she fell asleep and then after I had come in and spent about 15 minutes in there she told me I could leave. WOW! What a difference from this time last week when she would shake with terror even thinking about going into her room by herself.

On the flip side, she is still soooo irritable!!!! The tdoc described her as agitated from within. She had even noticed that Mary is stuttering trying to get words out because of the agitation. She gets half way through a sentence and then the words she is looking for just seem to disappear. She can't pull the right one up from her "files". That only makes her more frustrated and agitated. She is still pretty restless when she sleeps, even though she says she is sleeping fine. The brush goes flying across the bathroom because she can't get her hair to do what she wants it to do, the homework gets crumpled because she is can't concentrate trying to work on it, the chairs get punched because she is frustrated with her brother, etc., etc., etc... I did finally call the pdoc yesterday. I wanted to let her know about the irritability factor and I still have some questions about school. I hope that we hear back from her soon so that we can move forward.

We are still doing research and trying to determine what the best placement is for Mary for the rest of this school year. I am cautiously optimistic about some things, but can't share any of the details yet. We are trying to be extremely careful not to convey any of this to Mary, so our hours of doing research are limited to the few hours she is in school and after she is in bed at night. She is continuing to do okay during school and seems to be enjoying the 2 classes she is in right now. I do not think she can tolerate any additional time added onto that in her current irritable state of mind though. I am continuously so touched by the care and concern that the staff and teachers shower on her. We are blessed that the school has been willing to work with us every step of the way and that the staff and teachers that she encounters every day do their best to make her feel comfortable. Even though she is not handling things well emotionally this year, it isn't any reflection on the school. I feel like they really are on our side most of the time and are willing to advocate for our daughter. I definitely don't want to burn any bridges if we do decide that for Mary's emotional stability we need to change schools.

Breath of Heaven

I have been hearing one of my favorite Christmas songs in a new light these days. Amy Grant's Breath of Heaven chronicles the thoughts of Mary as she was carrying our Savior. I have always thought this was a beautiful song, but lately the second verse really meets me where I am. "Do You wonder as You watch my face, if a wiser one should have had my place? But I offer all I am, for the mercy of Your plan. Help me be strong, help me be... help me!" I wonder, does God wish He had chosen a wiser mother for my daughter?

It seems like so much of parenting this child is like trying to hit a moving target. We want so badly to do the right thing, to always make the best choices and to always be wise in parenting her. But so much of the time, we are off center by leaps and bounds. What we think is a good parenting decision (You will go get the blood drawn, it has to be done, end of discussion!) could cause post traumatic stress disorder to raise it's ugly head. So we go the opposite direction (would you like it if we could switch you to a different school?) and we set her up for a personality disorder. So which is the lesser of the two evils? We can't really win here?!?

The past week has been interesting to say the least. Between itching to distraction, seeing things that are not really there, and feeling like the soda bottle is about to explode inside her head again, it has been a roller coaster. I don't know at this point what is being caused by what and keep thinking each day that maybe I should call the pdoc? But then things seem to level out and I rethink calling. Maybe it is just a bad day, a bad hour, etc.? Does the new med just need time to get into her system? Do we need to go up again on the lithium? Is my high tolerance for these behaviors getting in the way of making the call?

I did call the tdoc on Saturday to talk about the whole ghost thing from Thursday night. She was great and gave us some good ideas of ways to help Mary get "unstuck" in her head about it. Instead of letting Mary sleep in our room, she suggested that one of us sleep in her room so that she could face her fears, but know that she is not alone in dealing with it. So for the next 3 nights, I slept on her bottom bunk bed. Yesterday I asked her if getting a baby monitor for her room so she could call for us in the middle of the night if she became frightened, would make her feel safe enough without me sleeping in there all night. She agreed and after sitting with her until she fell asleep last night, she made it through the night without us in there. She is cooperating with telling her brain to "stop" when she starts thinking about it and building it up in her mind. Those are all good steps in the right direction.

However she was SUPER irritable over the weekend. I don't know if it was the anxiety caused by the whole ghost incident, whether the new meds are not strong enough (or too strong), whether it is because we switched one med for another and then switched back 5 days later, or what is going on. The irritability has gotten a little bit better as the week has gone on, but it is still there. She told me one day before school that school was going ok but she was feeling so irritable she was afraid that she was going to punch someone if they did even one little thing that was frustrating to her. The pushing and loudness of the hallways are frustrating to her as well. She looked ready to lose it when I picked her up yesterday afternoon. I offered to see if we could get her a pass to leave class a few minutes early so that she could go to her locker and be at the next classroom door when the bell rings. But she really doesn't want to stand out any more than she already does, so she doesn't want to do that.

So my thoughts today go back to that song... "Breath of Heaven, hold me together, be forever near me. Breath of Heaven, light in my darkness, pour over me your holiness, for You are Holy. Breath of Heaven."

Ghost in the Night

Wow, 3 posts in 3 days... Aren't you proud of me???

Evidently Mary had some type of dream/hallucination last night. She did not tell me about it until around 5:00 this afternoon. When she did tell me, she was very calm and did not seem bothered by it at all. She said she woke up during the night, and saw what looked like a ghost to her. She was able to describe it quite well. It looked like a person that you could see through. It was standing by her window (3 stories up). It moved and looked at her. It was mean looking. She keeps insisting she was awake, and that it was not a dream. HHHMMMMM???

She has had visual hallucinations before, but they always involved what she has decided to be her "guardian angel". But it has been a really long time since she has had any of these type of things, so long in fact, she doesn't even remember it happening before. She has also described having monsters living in her brain in the past, but this is very different. It goes back to that unreasonable fear of things you know are not real, but what if they could be. We talked about how sometimes our brains can play tricks on us when we are half asleep. She understands that, but to her it still feels very real.

She remained calm about the whole incident last night until it was time to go to bed tonight. As soon as we went into her room to get her settled, panic set in. Her eyes were wide and darting around. She was very worried about seeing it again. I ended up putting her in our room on a few blankets. Even then she did not want me to leave her alone. Every noise made her sit up and look around asking what made the noise. It took her quite a while to settle down enough to fall asleep.

The itching has continued today and after talking with the pdoc briefly we decided to switch back to the doxepin and see if that helps. If not, then I will call again on Monday. I did end up giving it to her a little bit early tonight because she was just soooo itchy. I was hoping that it would start to work quickly to stop the itching, but now I am glad that I gave it to her early for another reason. It makes her sleepy and after her problems settling in tonight, I know if I had given it to her later, she would still be struggling to fall asleep.

Tonight I am praying Psalm 4:8 on Mary's behalf... "I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety."

Itchy, Itchy, Everywhere!

That describes Mary about now... uh-oh! I did something that I never do on Monday. I changed 2 medications at one time rather than give each medicine a few days to watch for side effects. My justification of doing 2 at a time was that one was really just a higher dose of a previous medication, just a different brand name. The other one was a swap out of one medication for a different medication, but both were in the same family and very similar. Now she is itching up a storm and is progressively getting more itchy. I have checked and checked for a rash. There is nothing there. But she is scratching so hard she is making herself bleed in spots and has bruised her skin in other places.

So... now I am left wondering... is it an allergic reaction to one of the new medicines, or is it a withdrawal from the one we swapped out? As I am thinking through all of this I remember that the reason we even started the doxepin (one we stopped so we could switch to a different one) was because when she started taking lamictal she complained that the palms of her hands were really itchy. Doxepin has some antihistamine effect as well as being an old school anti-depressant. Kind of killing two birds with one stone. I wonder if maybe that had been keeping the itching at bay all these years??? Of course that leads to another question... is it the lamictal causing the itching?? Lamictal has been known to cause SJS and one of the first signs of that is a rash. No rash, so hopefully we are okay. But I do remember the doctor specifically telling us to not do anything that would cause an itchy rash (think walking through the woods or tall grass, changing laundry soap, changing bath soap, etc.) that could then morph into SJS. Could all her scratching now cause the SJS to come into play?

I did call our family doctor and we walked through all the medications that she is on and cross referenced them all to make sure that there were no dangerous interactions. He also reassured me that unless she starts to have trouble breathing or if we see a rash develop, we don't need to take a trip to the ER. So for tonight she is safely tucked into bed and will hopefully not scratch too much during the night. I will call the pdoc in the morning to see what she thinks and would recommend.

One thing is for sure... life is NEVER boring around here!

Balancing Act

Life with a bipolar child can be a real balancing act. Sometimes it feels like we are walking on a high wire over shark infested waters, trying to juggle everything that life throws at us, and keep everyone on the high wire with us. I know that everyone feels that way about life at one time or another. It just seems particularly difficult to keep all the balls in the air without letting one fall to the sharks below right now.

We had a really good, but tough visit with the pdoc on Monday. None of us are really happy with the level of stability that Mary's current medications are providing. I was thinking a few days ago, that she is not terrible so if this is it, then that is okay. But we know that she can be better than this because we have seen it before. So that leads to some major medication changes, which always scares me! We are going up on the atypical antipsychotic medication. Good news on this is that we can switch to a different brand name that is extended release so we will hopefully see some of the negative side effects slowed down or eliminated. The bad news is that because it is not available in generic it is quite expensive. If we don't see real results in the way of side effects we will just switch back to the other generic brand, but we are hoping that it really does help with the side effects. We are also going to be tapering off of one of the mood stabilizers since it doesn't really seem to be working any more. There are other medications that we are switching out as well.

Another thing that we are all concerned about has to do with the side effects of the medication. Over the past 7 months, Mary has gained 25 pounds, her cholesterol is going up, and she is becoming at risk for developing diabetes if the weight gain does not slow down. Now, she has gone through a real growth spurt so part of that may well be a normal part of her age. But the elevated cholesterol is not good. And she is becoming self conscience of her weight. It is frustrating when you can't get any of your pants zipped. And it is getting expensive having to go out and replace her wardrobe every month. Now added to our list of things we need to do each and every day is alter our diet (which is not a huge thing as we don't eat lots of high fat foods anyway), and try to find some type of exercise that is fun and will get her up and moving more. She is not sedentary anyway, but we need to incorporate more movement and exercise in our daily routine. If we don't see the weight gain slow down or stop over the next month (HELLO-CHRISTMAS TIME???), then we will have to start looking at adding in yet another medication to balance out the weight gain.

All of these discussions led to the topic of school. WHAT DO WE DO???? She is so uncomfortable in her own skin right now, add in feeling so adamantly against middle school, you have a real mix for disaster. She just started back to school for a partial day yesterday. She was really nervous about what to tell all the kids who ask where she has been. We practiced some good answers that she is comfortable with and were appropriate to share with a group of kids so she would have a ready answer for anyone who asked. It is not that we are ashamed that she has been in the hospital or of why she has not been in school. But rather we want her to be sensitive to the fact that most kids don't know what to do with a friend wanting to kill themselves. She ended up doing really well and hopefully we are on the right path for now.

Unfortunately I got fussed at for introducing her to the idea of a small Christian school at this point in the process. I completely understand what the pdoc was getting at, and it was all things that I needed to hear, no matter how hard it was to sit there and listen to it. But the gravity of the situation has been weighing heavily on me. Mary's personality is such that she latches onto ideas that sound good to her and then she will accept no other alternative. She will campaign and beg and pray and plead until she gets what she wants. If she doesn't get what she wants, it sets her up to start cycling or worse start down the suicide road. Ultimately if we continue to let her control all of these situations with such a strong opinion we are setting her up to add a personality disorder to her list of diagnosis's. So how do we parent that??!!?? It makes me question everything that comes out of my mouth and every decision that we make. I guess I have to trust that my God is bigger than every mistake that I make and can redeem even my pitiful attempts at parenting this child He has given us.

So back to the question of school... we are still debating and praying about that. If we pull her out now, she wins (bad in the long term personality department) and we might be shooting ourselves in the foot financially since we would lose the opportunity to qualify for the special needs scholarship for next year and all the following years. If we leave her in, she is frustrated and miserable. How do we make the best decision for the immediate circumstances and not jeopardize her future success? How do we teach her to be part of the decision making process and be responsible for the decisions that are made without her input? She is not being demanding or ugly about her desire to go, but she is very belligerent about not going a full day to her current school. We still don't know if the Christian school will even take her. We have an appointment with the headmaster tomorrow. We have a list of questions from the pdoc and are planning to be very open and candid about our situation. And if we do decide that is the best place for her and she ends up hating it, where do we go from there?!? So many questions swirling around in my brain. This is only the very small tip of the iceberg. Again, I guess I need to remember Who my trust is in.

I am sorry that this post has gotten so very long. If you have labored through reading all of this, bravo for you. If nothing else, I am finding that writing everything out on here helps me process things more clearly.

Full Moons

I have a love/hate relationship with the full moon. It is so beautiful to see the full moon light up the night sky, especially in the fall when the air is crisp and cool. But on the flip side the full moon in the fall wreaks havoc on my daughter's emotions. The full moon in the spring is equally as tough.

This past week has been one of increased manic behavior. Mary has not slept well 5 out of the last 7 nights. Our rule of thumb is if her sleep is off for two nights in a row, we call the doctor. She has slept well one night and not the next, etc. She is having bad dreams again which makes sleep more difficult. Last night she slept in our room on the floor because she was not feeling well. She was SOOOO restless! She kept moaning and moving all night long. She is dragging and slow moving in the morning, but by afternoon she is talking fast, can't sit still, and feeling "exuberant". I took her to the grocery store with me one evening and she was spinning around in circles up and down the isles, lifting the shopping buggy up like it was a barbell weight set, and singing about mundane things over and over again. Since she is not in school and anxiety does not seem to be an issue right now, I have come to the conclusion that she is cycling.

On top of that, she has a stuffy nose, cough and has been complaining off and on about her stomach hurting. Since we increased the lithium we are watching for signs of toxicity. Stomach pains and flu like symptoms are some of the first signs that the lithium is too high. So, is she starting to become toxic or does she just have a cold??? To rule it out completely we would have to get a blood level done... that is so NOT going to happen! My gut says it is a cold. But we will be watching her even more closely over the next few days.

Our next doctor appointment is the Monday after Thanksgiving. I am praying right now for the wisdom of Solomon to be imparted on our doctor. I am not sure what the next step will be, but I am confident that she will have some good answers for us. Until then we will just continue to watch and pray.

Seeing Some Improvement

It has been just over 2 weeks since Mary came home from the hospital and it has been a good time of helping her get her feet back under her. She is still not in school. We are waiting on paperwork from the pdoc to get homebound services started again and still exploring what our other options are. I am a bit unsettled as to what to do for school. My first thought is to have homebound provide her schooling for the rest of the year and use that time to figure out what to do about next year. However Miss Mary has her heart set on going to a small Christian school. One of the first things she said to me when we started talking about this as a possibility was "If we do that, then the kids can pray for me as well as the teachers". What a sweet girl! We will see how it pans out. At this point, it would totally have to be a God-thing because there is no way that we can pull that off financially and if we pull her out now from the public school system we lose all hope of receiving any financial assistance from them in the future unless we put her back in for a full year. We also have to consider how stressful it might be to be put into a new situation where the teaching style is so very different than what she has experienced her entire school career, and on top of that, to be put into that situation mid year. It may be just what she needs, but then again, it may not. If we pull her from the public school, put her in the Christian school and then it doesn't work out, not only will we have lost the financial assistance from the public school, but we may have also lost the chance to put her in any private school. And we have no idea if the schools we are considering would even be willing to take Mary mid-year with all of her issues. I am praying that God would direct our steps clearly.

Medically we are seeing some improvement which is a very good thing. Her lithium levels were pretty low in the hospital so we made the decision to raise her dose of that. It is something we do with lots of fear and trembling since she gets toxic so quickly on it. But she has been on the higher dose for 2 weeks now and so far is not showing any signs that it is affecting her adversely. We really need to get some lab work done to see what her levels are now, but of course I don't think that is going to happen without major trauma. We are also lowering the anxiety medication back to what it was over the summer. The higher dose of that did not seem to make any difference in her anxiety level, so there is no reason to keep it so high. That medication can be pretty hard to come down on so we are watching her carefully. So far the only complaint has been these short lived intense headaches. They last less than a minute, but are pretty painful. I don't know if that is from the medication withdrawal, or something else entirely. I will mention it to the pdoc when I talk with her again.

We have been asked to be part of a research study that is groundbreaking in finding a genetic link to childhood bipolar disorder. It is something we think could be huge in finding a cure for bipolar disorder, or at least be better able to target the treatment of it. Part of this research has narrowed down a subtype of childhood bipolar disorder which they are calling Fear of Harm (FOH). It is the most severe type of this illness and thus the hardest to treat medically. Mary meets all of the criteria to fit into this category and it is wild to read an even more accurate description of what we have seen in her, especially before any medical intervention. Of course this is in such an early stage of research that there are no guarantees, but we are hopeful none the less. You can google Fear of Harm and read more about it if you are interested.

I have added a new song to the playlist on this blog. This is my prayer for Mary these days: Be strong in the Lord, Never give up hope, Your gonna do great things, I already know. God's got His hand on you so don't live life in fear, forgive and forget, but don't forget why your here. Take your time and pray. These are the words I would say!