Loving Pass Bipolar

Happy Sunday!! The weather is extremely hot, but I love it! I had a bit of a scare this morning. My church had a outside service this morning and my daughter Sophia got over- heated which aggregated her asthma. I don't play when it comes to asthma and heat sooooo........we took her to the ER. They ran all the normal test and blood work thank God everything is fine and she's home resting now. So my plans for going to the pool are out.

My daughter Remi  has her 2nd therapy session tomorrow, which I will fill you guys in on later this week. Remi is my oldest daughter who has  blessed us tremendously as my other 2 daughters have also. Remi has intellectual disabilities caused by 22q chromosome deletion. You can also check out my previous blog   http://ourspeciallifestyle.blogspot.com/2016/08/the-special-life-of-special-needs-mom.html 

Over the past 2 years  Remi as had increasing metal illness issues affecting her behavior. With 22q chromosome deletion you can develop a metal illness condition from age 18yr. - 30yr. approx..  So for Remi we started noticing a change at 22 years old.  In the beginning her behavior change was very subtle, we thought it was due to her graduating from high school and the change in structure. The first year out of high school was very difficult trying to find the correct placement and program for her. We were either put on a waiting list, not a good fit or extremely expensive. So I started homeschooling Remi....she still likes a school setting and enjoys doing homework. She also took a few classes at Northern Virginia Community College and volunteered at a nursing home. Northern Virginia Community College offers a program for adults with special needs. http://www.striveincld.org/faq.html#what  For extra social activates Remi still participates with the Special Olympics  http://www.specialolympics.org/ and takes dance class with friends we also started our on program call Remi's Bus.   But none of this seem to correct the behavior issues we were seeing. Over the years we have experienced extreme anger, yelling, hitting, you name it but we always know this is not really our Remi. She would always apologize and cry after every episode.

We realized something else might be going on so over the past year we have definitely gone through our share of psychiatrist and medications. Remi has been diagnosed with bipolar non -bipolar diagnoses. Which I completely do not understand. Based on my on research of the bipolar illness it does not fit what we're dealing with. It's been a very difficult journey. I'm not sure what has been worse, not being able to help Remi or dealing with doctors that mean well but can't help our situation. Not to mention the expense, is just ridiculous.

Our current psychiatrist has Remi on Lamictal 175mg a day. GOD has blessed us that we are seeing some improvement. And we are so THANKFUL!! The whole family is thankful. We truly know this is the work of the Lord, Remi was on Lamictal for a year without any change . Things were actually getting worse, more public episodes and more talking about wanting to die or kill one of her sisters. At this point we were  getting ready to start a new medication that her doctor felt would really work. But the side effects of course were more serious. With Remi having myoclonic seizures we are limited to medications that don't have a side effect of causing seizures. I'm so thankful to say Remi has not had a seizure in 8 years....that's right GOD took it away!! Praise him!!  So we were going to go ahead and start the medication and just pray that she would not start having seizures again.

The day I started to give her a pill I realized Remi had not had an episode in 2 weeks. So we felt this was something we can deal with. Now 7 months later things are not great but we are hopeful. We are still seeing  a longer span of time between episodes. Sometime once a week or once every 2 weeks. Through many prayers and looking at life with different eyes we are dealing with this blessing God has given us. I hope our journey will give you hope on yours. There are blessings even in the darkness. God Bless...