Tuesday, June 28, 2011

One Step Forward, One Step Back...

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.

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!

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!!!