Gosh, it has been a little while since I've gotten to post something new about Jensyn. Technically, this is not really "new". We are still trying to help Jensyn survive through this most difficult time while she gets stabilized on her current medication. Not sure if I ever officially divulged what challenge she is struggling with... it is not very easy to talk about. However, we went back to the doctor today and she used "the diagnosis" again, so I guess that after a year of trial and error and the last two months of med changes, we are giving this challenge the name Pediatric Onset Bipolar Disorder. It is a huge deal for me to share this with you. I have decided that we will not be the kind of family that has our "hidden secrets". There can be so much stigma attached to bipolar disorder and I am determined to make people aware that this is a medical condition, a brain disorder. I choose to share our personal information with you because I am confident that you will look past the disorder and see only the precious little girl who is being challenged with troubles that no child should have to deal with. Because she is so amazing at maintaining herself out in the world,I can almost guarantee that, had I not shared this, you would have never even known any of this about Jensyn.
So, back at the doctor today and we are increasing the med she has been taking since last year and we are maintaining the new anti-seizure medication, but stretching it out to three times a day instead of all at bedtime. This is soooo difficult to go through because we changed her meds due to med related weight gain, yet at this point she is still gaining weight... not quite as quickly as before, but she is still gaining =( [the previously posted 2# weight loss turned into 4# gain the next week]. Jensyn also went to the Pediatric Endocrinologist this week and he agreed to start her on a med called Metformin (actually a diabetes med) that we researched as being used to help halt and prayerfully reverse med related weight gain. We are giving it a 4 month trial to see if there is any change.
It seems so unfair that she would have to go through all of this. We are praying that these newest meds will really start working soon, the dr did tell us that it may take a while to really kick in. So in the meanwhile we are surviving day by day. It is like living with a completely different child, she is sad and mad and loses control for absolutely no reason, she cannot be consoled with our words, they just seem to prolong the anger. No matter what response we give, it is never the right one and the anger starts all over again. Oh, how I wish we could find anyone else going through a similar situation... it is almost impossible for those outside our home to even fathom the heartache this is causing. And although I know that she has zero control over what she is doing right now, I find it hard to remember that all day long as we roll from one episode to the next. It seems so wrong that I would be frustrated, even angry at times, with her for the things she is unable to control.
I have been reading and researching and educating myself and my family. I found an interesting description... what she is experiencing is like a "behavioral seizure". It makes sense to me, but to those who have never been audience to it, perhaps it will never make sense. I have learned that there is no way to reason or be logical with her, there is no way to talk to her without it being interpreted as aggression. The most terrible part is the paranoia... like when I glance over at her and she questions "Why are you looking at me?? STOP looking at me?? What do you want??" I tell you me heart is breaking today... I am mourning the joyful moments that I am missing out on.
I DO know that there is a plan and a purpose for all that we are going through. I have no doubt that God will use this beautiful girl for His Glory! It is days like this that I cling more tighly to my faith, knowing that God is with us. I am looking forward to the moment that her meds start working and I "have my baby girl back". I can't wait for the day I can post such wonderful news and we can rejoice together.
I feel that, for many, I may have shared too much information (tmi). Somehow telling my story helps strengthen me, so I thank you for continuing this journey. I appreciate your prayers and support - it means the world to me and my family.
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