Multi-disciplinary team is evaluating Andy for Autism

We have completed all interviews and observations for a team to evaluate Andy for Autism. I first met with a psychologist on my own, and answered questions about Andy's behavior. I was also sent home with two questionnaires about Andy's behaviors. Examples of questions were: How does Andy react to people with beards? How does he react to loud noises? Does Andy seem very interested in spinning things? Does Andy respond to you when you call his name? What happens when a new person enters the room?

The psychologist then met with Andy for testing and observation. She wanted to see if Andy could follow instructions. Does he respond to his name? Can he put objects into a container? How does he respond to blowing bubbles? Can he find an object under a blanket? Will he comfort a baby doll or try to feed her?

Then on a separate visit he met with a speech language pathologist for a speech evaluation. She wanted to know, has Andy ever put two different syllables together? Does he ever stop babbling when someone else starts talking? How does he react when you leave the room? She could see that he doesn't respond to his name. She then told me she will be meeting with the neurologist and psychologist as part of the team to evaluate Andy for Autism.

We will know more in a couple of weeks. I don't have an opinion either way. The final outcome I am hoping for is just for Andy to be able to receive some additional services that will be beneficial to him.

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.

Rough patch again

Andy is having a rough patch again, so it is hard for the whole family. He wakes up absolutely pissed off. He is screaming and scratching and whaling and moaning. He won't eat a whole lot. Every time it is meal time, he protests like crazy. I've spoken to his doctor about it. I guess we also need to revisit the dentist. He is out of control.

My daughter says he is ruining her life. She hates to hear him cry, we all do. It causes so much tension and absolute hopeless feelings about everything. The tension creeps up between my husband and I. His constant crying is so annoying, we can hardly stand it. I put him back into his bed every time, telling him he needs to calm down.

A lot of times, I will bite the bullet, and recognize he needs to get out of the house. Usually, I just put him in the van with a dvd, and we drive around. Today, I couldn't even do that, because the garage door seems to be frozen shut. So, I gave him some Tylenol, turned off the lights in his room, and told him you are just going to have to rest and wake up in a better mood.  After two attempts at feeding him breakfast and him screaming and arching and scratching, he just had to go back to bed.

Then my daughter comes home from a sleepover and hears him crying and immediately starts up. "You're ruining my life, I don't want to live here anymore. It's no fun here." So, I put her in a bath, and sent her back to bed as well.  I want to tear out of here, but the garage is frozen. I could take my husbands huge truck, but its a pain in the butt. On second thought, maybe I'll just go back to bed too.

Jay Z concert review 2014

My husband and I got to see Jay Z in Detroit at the Palace of Auburn Hills. It was an excellent show. I was raised in Detroit, and attended Detroit Public Schools until the age of 14, so I enjoy a lot of rap and hip hop. I am sharing some info about the Jay Z concert because I was looking online to find this info, because we were running late and did not get to the show until 8:20. We figured things would run late, but you can't help but worry you might miss something.

Some might be wondering what time does Jay Z come onstage? Who is the opening act for Jay Z? The tickets say the show starts at 8:00, but Jay Z didn't come onstage until 9:45. There was not an opening act, but a DJ played from 8:00-9:45. Jay Z was scheduled to come onstage at 9:00, but it was actually 9:45 when he came out. Some cities did have opening acts, but most just had a DJ playing until Jay Z appeared.

What songs were played? All the ones you'd want to hear, there were no disappointments. Jay Z's set list included: Crown, Holy Grail, 99 problems, Big Pimpin', Niggas in Paris, Dirt off your shoulder. A special treat was when he performed "No Church in the wild", and "F with me you know I got it". This isn't his song, but I was so happy to hear it! And he performed the whole song, and did Kanye's parts too for "No Church in the wild" and "Niggas in Paris". After he performed for over an hour, Timbaland came out and performed some snippets of his songs. He beat boxed a bit and played a piano and performed a new song. He was very entertaining too. After Jay Z had that break, he came out to do an Encore consisting of several songs. The Jay Z encore was:  Encore (his version not the Linkin Park one), Empire State of Mind, (H to the Izzo) Izzo H.O.V.A, Hard Knock Life, and my favorite of the night, Young Forever.

His crowd was more of a mixed bag. He had a wide range of ages, from teenagers and a few young kids, to some people in their sixties, maybe even seventies. It was an overall older crowd, more middle-aged people. I noticed this because some artists draw only a young crowd, if they are newer, while others draw all ages. Jay Z definitely appealed to everyone, and this could be seen in the audience.

Jay Z called out several people in the audience that were wearing his merchandise, and they were put on camera. Also, if they were wearing crazy sparkly dresses and what not. He told security to "stand down" several times when they tried to escort people out of the aisles that he was talking to and had on camera. It seemed like they didn't appreciate his barking at them, as he noted he just wanted everyone to have a good time.

The performance was amazing and was not disappointing in the least. He is a very strong performer, and rapped out all the lyrics, there was no lip syncing. We were curious to see if any other local performers would stop by the show, but they did not. It was totally fine though, the show was awesome as it was.

Finally, Jay Z told the whole crowd he appreciated everything everyone had to do to get there that night. He said " I know a lot of you had to get a babysitter, put gas in your car to get here, buy the tickets... and I appreciate that". I'm sure it made everyone feel good, and was nice to hear a thank you from him, that he really appreciated all his fans. I definitely have a newfound respect for him after hearing those words.

Revisiting a geneticist, Helpful Facebook groups

I belong to several Facebook groups, and some Yahoo email subscription groups. They are groups created by parents of children with special needs. You do not have to be "friends" with people in the group. You just have to request to join the group and wait to be added. They are very helpful, especially when parents have questions about behaviors their children are exhibiting.

Upon reading some comments from parents about their children and Microcephaly, I came across a girl with a genetic mutation that sounds like what Andy has. It is called a FOXG1 mutation. The syndrome is similar to Rett's syndrome, but is unique and has become it's own syndrome. The children who have this syndrome have never had a period of normal development. Symptoms that Andy exhibits are:

Microcephaly
Agenesis of Corpus Callosum, or Hypoplastic/thin CC
Inconsolable crying
Severe developmental delays
Hand washing motions
Vision impairment
Facial abnormalities-according to doctors
Non verbal
Non walking until between age 8 and 9

I have contacted his geneticist, which he hasn't seen for two years. I've been told it is good to keep a once a year relationship with geneticists, in case any new testing comes about. Andy has had several genetic tests in the past, but none have totally seemed to fit him. He was tested for:

Angelman's syndrome
Factor X
Prader-Willi
CGH micro array to test for duplications and multiplications of genes

If I can convince the genetic counselor, Andy will get tested for mutations in the FOXq region, which would include any of the FOX syndromes. The FOXG1 syndrome causes a truncation of a gene that makes important proteins for the brain. When the brain is deprived of these essential proteins, severe delays in cognitive and physical development occur.

The blog that lead me to this syndrome can be found here: http://meredithannelewis.blogspot.com

We had a good Christmas

We had a pretty good Christmas. Andy didn't have too many outbursts. He enjoyed new musical toys like pianos and trucks. I was worried I would have a really hard time with him out of school for two weeks. He has been manageable. When he has outbursts, he usually just needs time alone in his room, and often falls asleep.

Three weeks off of Abilify

Andy has been off Abilify since November 30th. It's been almost three weeks. I've been looking for signs of withdrawal, but don't really see any. He is still on Trileptal, which is a mood stabilizer. When he is having an angry outburst, and he receives 3 ml of it, he calms down within 20 minutes. He is getting it twice a day now. I am not interested in weaning him from the Trileptal just yet, but my husband would like to in the future. He is still having constipation issues. So, I keep a diary of how often he is having bowel movements and the size. I was told by a nurse to continue to give him a stool softener daily. Also, if his bowel movements have only been very small for several days he gets stool softener more than once a day, or something else to make him have a stool. This usually helps his behavior, and a low appetite to get better. The iPad is working again, so he really enjoys his interactive musical games, such as the Itsy Bitsy spider, by Duck Duck Moose.

Weaning off Abilify

I have weaned Andy off the Abilify. At one point, he was taking 5ml a day. It didn't seem to help much. He still has outbursts, whether he is on it or not, so I am taking him off.

I decreased him by .5ml each week. It took ten weeks. He had constipation several times during the weaning process. The main change I've noticed is that he is not as sleepy. Some days he does not want to take naps, but he will lay in bed for a quiet period though. The first night he was totally off Abilify, he did not go to bed until 1am. He did take a late nap on this day though. His body is slowly adjusting back to his regular sleep schedule.

I believe he is just getting older, and this is the main reason he isn't napping as much anymore. My feeling was to see how Andy's behavior is without Abilify, because I think he is just irritable Andy no matter what we do. He has happy times, and outburst times. During the outbursts, he is put in his bed, which he can't get out of, until he calms down. He cannot get out of his bed, because he still cannot sit up on his own. He can only roll around, and pull himself with his arms, like army crawling.

I have started up the orange flavored fish oil again. Once a day, he gets it with yogurt or ice cream. He's been getting it for about a week. I use the Omega-3 squeeze packs for him. Since the medication has been removed he seems a bit more alert. He is still on Trileptal for a "calming effect". I am going to start weaning this as well, after I talk to his nurse practitioner.