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.
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.
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.
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| Beckett Playing at the Park |
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.
