2 Weeks Out

The past 2 weeks have flown by. It has been full of end of the year school activities for everyone, and I am very thankful that we have not had to drive back and forth to Dunwoody every day as we originally thought we would have to do after Mary's release. I think overall there have been some positive changes, and we are trying to focus on those instead of the negatives. There are still meltdowns every few days, but the tone of them has changed. They are no longer the raging, angry, hate filled meltdowns. They seem to be triggered more by physical discomfort rather than emotional angst. And she does not want me to leave her when she is melting down, which is very unusual. Normally she is spewing such hatred and anger towards us that there is no choice but to walk out of the room.

To be honest, the first week having Mary home we felt very medically alone. We were not given much in the way of discharge instructions or things to be watching for on the new medication. We were told to follow up with our primary doctors, which is a great idea... however, there were no appointments available that week. The paperwork said that her cholesterol was elevated. Okay, but it also said that the lab work was done fasting at almost 11 AM. So, either they were wrong about the fasting part, or they did not feed my child until lunch time. If it was not fasting then the cholesterol results would not be accurate, and if they did not feed her before lunch time, that was not good either. I do want to give the hospital staff credit for what they tried to do for Mary. I am sure that our family was a real rarity for them. They are probably not used to patients who come from an intact family where the parents really WANT to be involved in the care of the child. We were not ones to just drop her off and say call us when she is fixed and we will come get her. Unfortunately for the staff though this means that we are much more likely to catch any mistakes that they make and for us to walk away saying that we could take better care of her at home. We learned a lot from this experience and know that we will carry that knowledge with us if we ever have to do that again.

Last week the feeling of being alone improved greatly. We were able to get in to see both the psychologist and the psychiatrist. And they confirmed what we already know, she is still manic and the cycling has not stopped or slowed down. We also received an email update from one of the bipolar child websites that we belong to that had some really interesting research in it. I won't go into all the details, but the short version is that they have been doing DNA research on children with bipolar disorder and they have been able to narrow down a more specific subtype of bipolar disorder in children. They are calling it the Fear of Harm (FOH) phenotype and in reading over it, Mary really fits that profile. If you are interested in reading more about this study and what they are finding here is a link to the page... http://www.jbrf.org/juv_bipolar/fohphenotype.html

We printed out a copy of this web page and took it with us to the psychiatrist office. After meeting with Mary for a few minutes (in which time she saw that Mary was definitely manic or "exuberant" as Mary describes herself) and then talking with us and reading this information, we came up with a new plan for stabilizing Mary. Over the next few months we are going to be switching out most of her mood stabilizing medications. I approach this with fear and trembling, as we do anytime we change medications. I think part of my fear is that this one mood stabilizer has been so good for her. There was a night and day difference when she started it almost 3 years ago. She has had no negative side effects from this medication, so it doesn't interfere with her daily life. And it doesn't require lab work to monitor the medication levels in her blood. It worked so effectively that once we got her to a therapeutic dose, she was stable for over a year. We had our daughter back and life was good. So, I hesitate to change that, but I also have to face the facts that it is not as effective as it was and going up on the dosage did not make her more stable. I completely trust our doctor and I agree that we need to change things around. I just do it with a bit of hesitation if that makes sense.

A few things we are asking people to pray about...
1) that the new medication will take effect quickly and that there would be NO negative side effects.

2) that the transition coming up from school to summer break would be smooth. Transition is usually very hard for Mary and switching medications in the middle of it might not help things.

3) for wisdom for us as we navigate parenting her and the other kids.

4) that God would continue to soften our own hearts and encourage us to look outside of ourselves and love others well.