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.
Monday, November 22, 2010
Monday, November 15, 2010
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!
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!
Subscribe to:
Posts (Atom)