When will I learn that you can't start a new med and change the dose of an existing med at the same time??? And yet that is exactly what I did this past weekend! We decided at her last p-doc appointment to raise the dose of Buspar and add in Rozerem to help her sleep better. She is definitely falling asleep faster (half an hour from the time she takes her medicine instead of 1 1/2 hours or more).
The last couple of days have brought increasing anxiety, irritability, and overall unrest. Today she has spent quite a bit of time telling me that her brain is rushing, rushing, rushing and won't stop. She was on the verge of meltdown most of the day and did meltdown a couple of times tonight. The only thing that I can think of that has changed is the meds, so we are taking a step back starting tomorrow. The other thing we are not sure about is whether these feelings are a side effect that will go away with time as her body adjusts to the medicine, or if it is something that will continue indefinitely, or if it is even caused by the medicine at all? Since we are not sure if it is the med increase or the new med that is possibly causing this change in her, we will drop the older med back down to what it was before the weekend. What complicates this further is that we are supposed to go see Mark in WV next week. I am really hoping to gain some stability back before we leave! If we can't, it will be an interesting week to say the least.
Tuesday, June 28, 2011
Friday, June 24, 2011
Some Answers to Your Prayers...
A huge thank you to everyone who has been praying for us over the past few weeks regarding bloodwork for my girl. No, we have not yet been successful in getting it done, but we have made some giant steps forward towards that goal. Many of you know that even the mention of having a needle come anywhere near Mary has been enough to send her into a complete meltdown, the effects of which would last for days or weeks. She has threatened to stop taking her medications if it was going to involve having blood drawn. She has spent many hours worrying about it and getting stuck on the fears that accompany those thoughts. Previously even the mention of a needle or the sight of blood would make her close in on herself and completely shut down. Well, this past week, we have not only been able to talk calmly and (mostly) rationally about the need to have this done in the near future (and not just once, but multiple times), but she has also agreed that she would be willing to work with a cognitive-behavioral therapist to help her conquer her fears. She is still very nervous and wants to cry when we talk about it, but she doesn't cry, which is so huge! A few months ago talking about it at the p-doc's office sent her into a crying, yelling fit, resulting in her telling the p-doc that she hates her and that she thinks the p-doc is the worst doc in the whole world. This last visit, Mary actually brought up the subject. Now, it was to tell the doctor that she did not want to talk about it, but it was still a step in the right direction. And of course the p-doc took the opportunity to talk about it a little bit and pointed out to Mary how much she was maturing and how proud she was of the fact that she was talking about it without crying.
So, for all of you out there praying for my girl, please keep it up!
Another cool way that I am seeing God answer prayers involves things that I didn't even know to ask people to be praying about. I love when God does that. He has the answers all planned out in advance and it seems that almost the moment it occurs to me that I need to be praying about this, boom, the answer is there. Anyway, I have been thinking a lot about the learning issues associated with bipolar disorder. Mary also has a learning disability so I have been wondering just how much of the learning issues are a result of the learning disability, how much is from the bipolar disorder, and how much is from the medications. It is all just such a soup pot in there! As I was talking to the p-doc this week about these thoughts, she recommended that we go ahead and get a full psychological test done. She has had two of them in the past, but the last one was in 2007 so it is time to pursue that again. Now, normally this is something that the public school would do for us (if Mary was still in the public school). They will still do it for us since Mary is still considered eligible to receive services from the school, but we are going to have to jump through a few hoops and the process won't even start until school is back in session in August. However, the p-doc also recommended looking into maybe going to a local college or checking with NIMH to see if they are doing any research protocols that would involve these types of tests (which if we had to pay for out of pocket would cost thousands of dollars!). Now, here's the cool part... are you ready... NIMH just happens to be doing a study on the brain function and course of illness in pediatric bipolar patients, and they are still recruiting participants. I have had several phone conversations with them and we are in the process of seeing if Mary fits their protocol for the study, but if it works out, it would be so great! She would receive all the tests that a school or private psychologist would do plus some, and it would not cost us a thing. AND... get this... it is a long term study so it would also provide these tests probably on a yearly basis to monitor her progress as she grows up. Of course it is not a sure thing. We do not know if we fit their protocol, or if they will accept us into the study. But the possibilities just give me goose bumps!
So, for all of you out there praying for my girl, please keep it up!
Another cool way that I am seeing God answer prayers involves things that I didn't even know to ask people to be praying about. I love when God does that. He has the answers all planned out in advance and it seems that almost the moment it occurs to me that I need to be praying about this, boom, the answer is there. Anyway, I have been thinking a lot about the learning issues associated with bipolar disorder. Mary also has a learning disability so I have been wondering just how much of the learning issues are a result of the learning disability, how much is from the bipolar disorder, and how much is from the medications. It is all just such a soup pot in there! As I was talking to the p-doc this week about these thoughts, she recommended that we go ahead and get a full psychological test done. She has had two of them in the past, but the last one was in 2007 so it is time to pursue that again. Now, normally this is something that the public school would do for us (if Mary was still in the public school). They will still do it for us since Mary is still considered eligible to receive services from the school, but we are going to have to jump through a few hoops and the process won't even start until school is back in session in August. However, the p-doc also recommended looking into maybe going to a local college or checking with NIMH to see if they are doing any research protocols that would involve these types of tests (which if we had to pay for out of pocket would cost thousands of dollars!). Now, here's the cool part... are you ready... NIMH just happens to be doing a study on the brain function and course of illness in pediatric bipolar patients, and they are still recruiting participants. I have had several phone conversations with them and we are in the process of seeing if Mary fits their protocol for the study, but if it works out, it would be so great! She would receive all the tests that a school or private psychologist would do plus some, and it would not cost us a thing. AND... get this... it is a long term study so it would also provide these tests probably on a yearly basis to monitor her progress as she grows up. Of course it is not a sure thing. We do not know if we fit their protocol, or if they will accept us into the study. But the possibilities just give me goose bumps!
Tuesday, June 14, 2011
Prayers Appreciated...
We are nearing the deadline for getting some blood work done and we are no closer to actually getting the blood from my daughter's body and into the little tube. I know that there isn't really a "deadline", but we do have a pdoc appointment next week and having the results from lab work will help us make better decisions regarding medications. My prayer has been and will continue to be that God would miraculously intervene here and change her fear into peace. I want her to be completely okay with going to the doctor's office and having the blood drawn. I want her to be able to say that she did it and it was no big deal. I want this "monster" in her head that has built this up to traumatic proportions to be silenced. But unless she is willing to take the first step, those things are not going to happen. Please pray with us!
Monday, June 6, 2011
One Week Down...
We made it through the first week of our summer break! After the first couple of days of complaining, the kids have settled in to the routine of doing a little bit of school work to keep their brains working. Mary is doing really well at it and even worked ahead of the "schedule" so she could have an extra day off on Friday. She has also discovered the joy of reading!!! I am sooo excited about this. I have always been a big reader myself. Most of the time, I would much rather sit down with a good book and good cup of coffee than watch tv. So, it is wonderful to see Mary start to develop that habit as well. Last week she read almost a book a day. We had to make a couple of trips to the library to get more books. I hope that continues!!! She was also super focused on writing a new story of her own, typing a story that she had written last year, and working on drawing some new pictures.
All of this focused activity is wonderful... but on the flip side of that, it could also be a sign of being just slightly manic. I hate that I think that way!!! It is awful that whenever she is having a good bout of creativity, I always look for the signs of mania. But it is also a fact of life for us. And this weekend has proven that it could possibly be the sign of a manic or more mixed cycling. She has been "off" and irritable all weekend. It could be the changes in routine (daddy left for his summer job in WV). It could be the excitement of lots of activities (church picnic on Saturday, day spent with friends on Sunday, the extreme heat wave we are having here in GA, etc.) She has admitted that she is feeling overwhelmed and stressed again. Loud noises, physical discomfort, and other things seem to be more stressful than they were last week for her. I had a moment (or two) of panic at the church picnic when she was very irritable and then I could not find her. You know when you just have a gut feeling that something is not right and you need to physically see your child to know that they are ok? I had visions of previous summers when she had done some extreme things like trying to jump from a moving car, or refusing to let me get near her in the mall parking lot (boy didn't we draw attention that day). I did find her and we talked about how if she began to feel overwhelmed enough to run away that she needed to come get me so we could "run away" together (i.e. go to the car and cool off in the AC for a few minutes to regroup). At least she is talking with me about the stress, which is a good thing. For now, we will just keep a close eye on her and hope that the mood levels out again quickly! Prayers appreciated!!!
All of this focused activity is wonderful... but on the flip side of that, it could also be a sign of being just slightly manic. I hate that I think that way!!! It is awful that whenever she is having a good bout of creativity, I always look for the signs of mania. But it is also a fact of life for us. And this weekend has proven that it could possibly be the sign of a manic or more mixed cycling. She has been "off" and irritable all weekend. It could be the changes in routine (daddy left for his summer job in WV). It could be the excitement of lots of activities (church picnic on Saturday, day spent with friends on Sunday, the extreme heat wave we are having here in GA, etc.) She has admitted that she is feeling overwhelmed and stressed again. Loud noises, physical discomfort, and other things seem to be more stressful than they were last week for her. I had a moment (or two) of panic at the church picnic when she was very irritable and then I could not find her. You know when you just have a gut feeling that something is not right and you need to physically see your child to know that they are ok? I had visions of previous summers when she had done some extreme things like trying to jump from a moving car, or refusing to let me get near her in the mall parking lot (boy didn't we draw attention that day). I did find her and we talked about how if she began to feel overwhelmed enough to run away that she needed to come get me so we could "run away" together (i.e. go to the car and cool off in the AC for a few minutes to regroup). At least she is talking with me about the stress, which is a good thing. For now, we will just keep a close eye on her and hope that the mood levels out again quickly! Prayers appreciated!!!
Sunday, May 29, 2011
The Start of Summer...
I can't believe that it has been over a month since I last posted! I am sure you know how the month of May can fly by with all of the end of the school year activities. Multiply that by 4 kids in 4 separate schools, and, well, you get the idea. It has felt like a whirlwind of nonstop activity around here. I am happy to report that all the kids finished strong in their various schools. I am also happy to report that next year we will be cutting our schools in half! Our oldest graduated from high school with honors, and we decided to move our youngest to the private school that Mary has been attending for the last half of this year. So 3 kids in 2 schools seems to be much more manageable at this point in our lives.
Mary seems to be leveling out somewhat. She is still cycling slightly, but the swings are not as dramatic. The anxiety medication seems to be helping (a big PRAISE GOD!!). A month ago I would have said that the raging and suicidal thinking was simmering just below the surface. She was like a caged lion, pacing and agitated just waiting for something to throw her into a meltdown. Now she seems to be much more relaxed and less on-edge. She is still pacing and rocking but not agitated.
Our next big hurdle will be to have blood drawn. We were told by our p-doc that we could wait until school was over, and well, school is over. We have been trying different doses of sedative to try and find one that would relax her enough to have it done. Unfortunately we have not yet found the right dose (or maybe just haven't found the right medication?). The one that we have been tweaking has some pretty strong side effects as it is clearing her system. She goes back to the highly agitated state and is very emotional. It does not sedate her enough (in my opinion) to have the blood drawn without the typical hysteria that accompanies it, and of course if we force the blood draw on her, we risk having her develop PTSD because of it. I think that if we could just find the right sedative at the right dose to make a few blood draws painless and non threatening we would be well on our way to helping her conquer the overwhelming fear that she has of needles. If we can just show her that she can do this, it will make a huge difference.
I am determined that the kids not lose much of what they have learned this school year over their summer break. So, I am going into this break armed with some good handwriting books, math reviews, and grammar reviews. We have picked out a Psalm in the Bible to memorize (a few verses each week), and they also have picked out the Chronicles of Narnia to read. We will spend a little time each day doing these and I really hope that it helps keep their brains focused on learning. I will need encouragement to keep this up as it is my nature to start strong and then slack off as time goes by. I am threatening that unless they get their assigned work done each day they won't be allowed to go and do fun things with friends. I am also dangling a carrot in the form of a reward at the end of the summer for each week that they complete their work. Maybe these will motivate us all to stay consistent?
As we begin our summer break, I am praying for continued stability, a smooth transition, and a summer we can look back on with fond memories. It will be tough as Mark will be out of town most of the summer, but my prayer is that we all lean more heavily on Christ when we are feeling most overwhelmed. I want to recognize the hard days for what they are- a reminder that this world is not our true home and can never fully satisfy us. There is a new song out there by Laura Story called Blessings. If you have not heard it you can find it on i-Tunes or see videos on YouTube. I highly recommend listening, really listening to the words. It brings me to tears every time! Now, go listen to it...
Mary seems to be leveling out somewhat. She is still cycling slightly, but the swings are not as dramatic. The anxiety medication seems to be helping (a big PRAISE GOD!!). A month ago I would have said that the raging and suicidal thinking was simmering just below the surface. She was like a caged lion, pacing and agitated just waiting for something to throw her into a meltdown. Now she seems to be much more relaxed and less on-edge. She is still pacing and rocking but not agitated.
Our next big hurdle will be to have blood drawn. We were told by our p-doc that we could wait until school was over, and well, school is over. We have been trying different doses of sedative to try and find one that would relax her enough to have it done. Unfortunately we have not yet found the right dose (or maybe just haven't found the right medication?). The one that we have been tweaking has some pretty strong side effects as it is clearing her system. She goes back to the highly agitated state and is very emotional. It does not sedate her enough (in my opinion) to have the blood drawn without the typical hysteria that accompanies it, and of course if we force the blood draw on her, we risk having her develop PTSD because of it. I think that if we could just find the right sedative at the right dose to make a few blood draws painless and non threatening we would be well on our way to helping her conquer the overwhelming fear that she has of needles. If we can just show her that she can do this, it will make a huge difference.
I am determined that the kids not lose much of what they have learned this school year over their summer break. So, I am going into this break armed with some good handwriting books, math reviews, and grammar reviews. We have picked out a Psalm in the Bible to memorize (a few verses each week), and they also have picked out the Chronicles of Narnia to read. We will spend a little time each day doing these and I really hope that it helps keep their brains focused on learning. I will need encouragement to keep this up as it is my nature to start strong and then slack off as time goes by. I am threatening that unless they get their assigned work done each day they won't be allowed to go and do fun things with friends. I am also dangling a carrot in the form of a reward at the end of the summer for each week that they complete their work. Maybe these will motivate us all to stay consistent?
As we begin our summer break, I am praying for continued stability, a smooth transition, and a summer we can look back on with fond memories. It will be tough as Mark will be out of town most of the summer, but my prayer is that we all lean more heavily on Christ when we are feeling most overwhelmed. I want to recognize the hard days for what they are- a reminder that this world is not our true home and can never fully satisfy us. There is a new song out there by Laura Story called Blessings. If you have not heard it you can find it on i-Tunes or see videos on YouTube. I highly recommend listening, really listening to the words. It brings me to tears every time! Now, go listen to it...
Tuesday, April 26, 2011
Another Milestone!
Today marks the 6 month point since Mary's last inpatient stay at the hospital. Yay! We are praying that this continues and we won't see the inside of a psychiatric hospital for very long time.
Saturday, April 16, 2011
We've Come A Long Way Baby...
One year ago right now I was chasing my daughter down the middle of the street in our neighborhood, praying that no cars would come by. At the same time, I was on the phone with a 911 operator trying to explain the situation... I have an 11 year old bipolar child who is trying to run away from home and I need help transporting her to the hospital. This was the beginning of a very long day, a very long week, and a very long year. I am so thankful that this morning my daughter woke up smiling and happy. She is not suicidal, nor is she considering running away from home. She has a fun day planned with friends, we have a new medicine to try for the anxiety that rules her thinking, and the outlook on the future looks a little brighter. Is she completely healthy and stable? Not by a long shot! She is still all over the board as far as emotions. But at least for this very moment we are in a much better place than we were a year ago today. Thank you God!!!
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