Back to the Drawing Board...Again, But This Time... Expecting Change!!

Well....back to the drawing board.  Seems like Beckett didn't do so well on his Intuniv for ADHD.  I am thinking that he's not ADHD after all.  He became violent and his personality changed as we continued his dose over a weeks period.  He became a wild animal.  Biting, scratching, kicking, and the continuous screaming for hours.  For an entire week we had him on the Intuniv taking his dose in the evening and caused him to wake up during the night several times also.  I don't remember sleep deprivation that bad since the twins were infants. I had to take a 1/2 a day off work just to get some rest that week. We still have him on the Vayarin, which seems to be doing well.  We have also upped his dose of time released melatonin to 2.5 mg before bed. This has been a life saver for us because now he sleeps through the night.  He sleeps anywhere from  9 -10 hours at night.

Of course, once we started to get him regulated off the Intuniv, he ends up getting strep throat, AGAIN!  My poor boy has had strep throat about five times since he had his tonsils out a little over a year ago.  He actually told me for the very first time his tummy hurt, saying he had to "poo-poo", then throwing up all over the bathroom. That boy was sick.  I was shocked that he communicated to me he didn't feel well.  I was also very happy that he took the initiative to do so.  I am thinking that children like him also have a lowered immune system that is affected by their chromosome mutation.  He has been so sick as a child and he seems to be allergic to everything, especially antibiotics. They put Beckett on one of the strongest antibiotics they make this time.  I am hoping it works and knocks out the strep. Now that he has been on antibiotics for about 8 days, he has gone back to that sweet, loving boy I know when he is well.  The only side note to that, is he tends to be stuck in his terrible 3's.  He still continuously screams when he doesn't get what he wants, it's just easier to distract him when he is feeling better.

Beckett Playing at the Park

In the next few weeks we will be having a 20 hour EEG to determine if he is having seizures.  I am very anxious for this, because I can't help to think that this might be causing some of his screaming fits and high anxiety.  Sometimes he tends to zone out and just stare, then other times he just loses it and screams when he is told no, and once he gets started it is hard to bring him down from it. 
I pray for more answers.

In the mean time, I have been trying to gather information for Dr. Michaud and putting together a type of Parent Driven Study to bring families and doctors together to help with furthering Dr. Michaud's work.  I am still praying that there will be help for these kids and that things will begin to fall in place to create some type of organization to help families like mine and also help scientists fund their research on SYNGAP. 

If you are a family of a child or an adult diagnosed with SYNGAP, please do not hesitate to contact me.   

Breaking Out of the Bad into the Good!!

Well...you know I had to incorporate something in the title of one of my favorite shows on TV, Breaking Bad..LOL!  Yes, the finale is tonight!!  It is a very thought provoking show that has made me think about how people can take two different paths on how to deal with "Bad" things that happen in life.  Of course, this series took it to the extremes and showed the desperation and obsession one man had to live his life like he wanted and also try and justify it by using the excuse of taking care of his family.  Funny thing is, I think we have all thought about the "what if's?" and then just continued on with the life we have been dealt.  I guess this is where our belief's and values come in. I whole heartedly believe that God puts us in situations either to teach us something or to prepare us for something we will have to deal with in the future.  But He is where we get our strength.

This whole experience that my family and I are in with taking care of a special needs child has allowed us to meet people we otherwise would have never met, showed us that sometimes our plans aren't as great as what God has for us, and that we can live with the trails put in front of us and come out stronger that we ever thought.  People say to me all the time, how do you do it?  I think to myself and laugh that, "I just do!"  You could too if it was put in front of you, you are forced too. Most of us think we couldn't because of the things we would so selfishly have to give up.  But you just do it because you love your child.  What else would I do?  Lock him in a closet somewhere and throw him some food and water every now and again?  He is my son and is a person that God created and has given him to us as a gift.  We are charged with taking care of him. 

Over the last 9 months since Beckett has been diagnosed with SYNGAP1 I have come to know many people that are going to be life long friends and am excited that we can be a support for each other.  We together are working on a way to raise awareness and hoping to begin a foundation that will raise money for research and to help families like ours with medical financial needs.  Of course, we are looking for a civil attorney that can donate their time to help us out with that..so if you happen know anyone..send them my way! ;)  

Since my last update on Beckett, he has begun to say more words.  This morning he called for his daddy to come get him and has said the phrase "Help Me!".  We have him on a new medication called Intuniv that helps him with his impulsive behavior and acts as a mood stabilizer. We have had to adjust it some as at first it made him sleep 16 hours a day. He takes it one time a day. I think we now have it set to where he takes it at night before he goes to bed and helps him not to be so sleepy.
Over all, Beckett is still making slow progress, but it's progress.  He still has his daily meltdowns afterschool, but we are working on those and my "art of distraction" is getting better.  We still take everyday as just that, day by day.

And you know I couldn't just end my post with that.  I have to share how proud I am of my oldest son for graduating from the United States Marine Corp.  He has made me so proud too!