Weaning Trileptal, Andy's doing great!

Andy has had such great days lately. I always have myself braced for the horrible storm that is Andy, and it is so refreshing to just have him be happy lately. I honestly think we have a lot of prayers coming our way, as more and more people are finding out about my son. I fully appreciate all the help we can get! My daughter and I pray for Andy each night, and I think it helps.

Andy has been taken off of Abilify since November 30, so it has been 3 months. I am now cutting back on his Trileptal, which is a mood stabilizer. He takes it twice a day. I am first lowering his morning dose, and keeping his evening dose the same. He is doing quite well with a ten percent wean each week. I lower his dosage by .5ml or .25ml based on how he is currently doing.

He's been doing so well, I can't believe it. He's been happy, even though he's sick with a cold. We've been enjoying him more and more, and getting more bonding time. My daughter has been bonding with him as well. She can see that he really loves her.

I really don't know if he is doing better because of the medication removal, or if he's just having progression. Maybe his brain is growing.

I have noticed that when I try to alter his evening Trileptal dose, he has trouble falling asleep at night. So for now, I have been leaving it alone, until the morning dose has been completely removed. When I start to bring the evening dose of 2ml down, it is going to be very slow. I will be monitoring whether he can fall asleep at night to see if I can remove ten percent each week or not.

 Andy has always been a good sleeper, and sleeps through the night. However, with the addition of these medications, I think he has become dependent on them to fall asleep. Somehow his natural rhythms have to take back over regardless of these medications.

Irritability has been better-Project "Save our Sanity"

Andy's irritability has been a bit better this week. It seems to be directly related to whether he is constipated or not. Andy doesn't care for juice much, but will eat half a fiber one bar each day. He also gets Miralax, and I try to have him do a bit of standing to get him on his feet. Andy's low muscle tone and immobility contribute a lot to his constipation.

Some days he tries to pull himself around on the floor, and this helps his digestion a bit as well. I also have to make sure everyday that he is getting adequate fiber and a bit of exercise to keep his bowels going. Irritability can escalate quickly for Andy if his belly isn't feeling well.

I met with a behavioral therapist for Andy. We went to an Autism and Behavioral disorders clinic. They interviewed me first about all of Andy's behaviors. Next visit will be to observe Andy, and do some other psychological evaluations to see what age level he's at. The final visit will be a feedback visit on what services might be available for him. He has not been diagnosed with autism, but if he has some form of it, we need to know and move forward.

I am starting to get better prepared for this summer. We are going to have a lot more planned out activities, so Andy won't be too bored when school is out. His boredom also leads to huge tantrums, and last summer was horrible for bad behavior.

I'm getting to know Andy's triggers for his outbursts, and I am ready to defeat them now. Constipation, boredom, him needing to move around more/exercise, and I'm actively planning my strategies. It's project "Save our Sanity".

Pursue FoxG testing?

Andy's geneticist did not want to test Andy for FOXG syndrome. He felt the symptoms were all too general and that anyone could fit the symptoms. I disagree, and am not sure about how to further pursue testing. His neuro is saying Andy needs whole exome testing, but we are not going to pay 10 thousand dollars for this. I've looked online for a kit we could use ourselves for the fox testing, but can't find one. I might have Andy return to a past neuro and ask his opinion on further testing. Fox g was a test I felt would be worthwhile, but when professionals don't agree, I don't know what to do.