Monday, April 23, 2012

Agenesis of Corpus Callosum and behavioral issues

Andrew saw a third opinion neurologist today. I felt that we didn't get much of anything out of the previous two neurologists, and I was right. His PMR doc was also failing us, by telling me to "just use calming techniques" for my sons daily inconsolable crying fits. My pediatrician told me that she wanted a neurologists opinion before administering a medication to help calm him.

The neurologist reviewed my sons MRI images and said, "Your son has agenesis of the corpus callosum. This causes him to have a chemical imbalance in his brain, which causes meltdowns, and he tries to hurt himself right? By banging his head?" I said, "yes". He says, "no one has told you to medicate for this?" I say, " I was given calming techniques to use". He said, "calming techniques will not work with these types of kids, they need to be medicated. Does this happen every day?" I answer, "not only every day, but sometimes all day long". And then I want to cry, but I didn't, I just got teary-eyed and angry. Angry that we've had to put up with this for so long, but now we are finally getting help. He asked if I'd be willing to mess around with different dosages and possibly have to try different medications, and I agreed. I told him we are at the end of our rope.

Friday, April 20, 2012

Andy's scooting around!

Andy demonstrated a few belly scoots pulling with his arms a couple months ago, but then we didn't see them again for a while. Any time I'd interfere, and try to push his feet along, it seemed to ruin his scooting. So, I thought I'd leave him alone, and place toys out of his reach, then I'd leave the room and he'd move for them. He then scooted around really well at my MIL house on St. Patty's day, but then he wouldn't do it again for a whole month! I was so bummed, I thought for sure he'd start taking off.

Now he seems to be okay with scooting in front of me with some coaxing, maybe because he knows I'm not going to help him. Maybe he also understands now my verbal cues for trying to get him to move towards me, "come on Andy, come get the toy". I really don't think he understood what I wanted him to do before. Mostly, Andy rolls as much as he can, before he has to scoot to the toy. It's obviously much easier for him to mostly roll, then finish up with the belly scooting. So, I really really hope we will start seeing his scooting around more consistently now.

Before bed I was letting Andy explore his room. He was really into it. He was moving all around, little by little, and getting into whatever he could. It was so awesome to watch him explore whatever he wanted to. He wasn't happy to be told it was time for bed, I think he wanted to keep looking around. I told him "you can crawl around your room tomorrow okay", but he still cried in protest as I laid him in his crib.

Tuesday, April 17, 2012

More sounds

I can't believe it, but Andy has been making a few more sounds over the last two days. Hearing him speak is still rare, but just hearing new sounds is exciting. Yesterday, he said "Ay", after hearing "the letter A" on a DVD. Today, "up" returned after he heard a toy saying "up and down", he tried to say "story"after hearing the word, "break" after hearing me and his sister say it, and "way" after hearing me recite a rhyme.  I'll take imitation of sounds any day.

I am still giving him the Omega-3 oils with 230mg DHA in them daily, mixed with yogurt or ice cream. He is pivoting more and more each day. Hopefully, the combination of DHA and him moving around more are stimulating his brain! I find myself excited to wake up and get him going to see what he will be doing today! I also have a whole lot of positive thinking going on, and I am trying not to think negative thoughts at all. I am trying to just believe in him, and feel in my heart that he is going to show me great things every day.

Sunday, April 15, 2012

Andy's getting more active

Very exciting today, I heard Andy say "la, la, la" for the first time. He also reached out and pulled himself into sitting. I kept lying him back on my bed and offering him my hand, and he'd take it and pull himself into sitting. Then when I put him in his crib he kept pivoting in circles over and over again. We are probably going to get him a twin size bed from Ikea, and we'll have to modify it. We just haven't made it a priority yet. He got his fish oils today and I just feel I have so much faith in him right now. I really feel like he is going to emerge right before my eyes over the next year. I was really disappointed when he turned two and nothing really happened for him. But maybe turning three will hold great things. I'm getting excited now!

Saturday, April 14, 2012

Increasing Andy's DHA with Omega3 oils

I took a brief break from giving Andy fish oils for a while, because I was really down and out about Andy plateauing with therapy for a while. Recently, I decided to start with the oils again, and I have to say he seems to be having a light bulb turning on. I'm seeing minor changes, but at least I'm seeing some movement forward. I wanted to start them up again, because DHA and supplements in general came up in a recent support group of mine.

Andy has been demonstrating pivoting on the floor for toys, and small amounts of army scooting for toys. I've also been reading "The late talker", where the author believes the fish oils to be helping her sons speech.  I thought it would be a perfect time to start up the omega-3 oils again.

During this week of daily fish oils containing 230 mg of DHA and 300mg of EPA, he is babbling new sounds I've never heard before. "Yeah-yeah" brand new, and "da-da" has returned after months of being absent, head shaking for "no", saying "poo-poo" has returned after months of being absent, vocal play and imitation of sounds is emerging.

We are sticking with the orange flavored coromega oil packets. I mix a packet with 2 tablespoons of vanilla ice cream, and he loves it. I am trying a new oil right now by Dr. Sears, but I'm having a hard time finding something to mix it with so it won't taste bad. It has a strawberry and lemon flavor and it isn't good by itself.

I have found so many different suggestions for the amount Andy should be getting every day. Some websites recommend 100mg a day, some say 200mg, others say 500mg, and another said 700mg of DHA a day. Some authors suggest a combined DHA and EPA amount of 500mg, which is about what our current fish oil gives. This Harvard university website suggests 500mg of DHA a day Harvard Omega-3 oils recommendations.

The current oil we are using right now has a combined DHA and EPA of over 500mg. I gave Andy a double packet today, to see how he'd do. I am watching to make sure he doesn't get an upset stomach from a higher dose. So far, so good, but I will only do this a few times a week. I seem to be finding that 1000mg might be okay for him, but since I'm not totally sure yet, I will stick with the 200-500mg.

When I asked my sons neurologist about omega 3s he said don't bother! But we're on our third neurologist now, because they don't seem to know anything about Andy and why he's like this.

Monday, April 9, 2012

I checked out a second preschool

I was very unsure of enrolling my son into preschool. He is still as a 6 month old, so it was hard for me to understand why he should be going to preschool. However, when I visited the second preschool that was suggested for my son, I loved it. I felt that the staff was very capable of taking care of my son. They walked through what his day would be like, and how they would sit him, and what circle time would be like. The therapists would come in and work with him one-on-one, and he would also have tummy time with the other kids. I left there feeling like this was going to be a good decision for my son. I am glad that I decided to look at this particular preschool even though most thought it might not be right for him. The staff seemed to feel as well that Andy would fit in great there. It is a less restrictive program than the first school I looked at, therefore I think it will allow Andy to explore more. I don't want him to feel like he can't move around when he wants to. I think it will allow him to interact more with the other kids, and he will be happier there. 

Friday, April 6, 2012

Knee immobilizers

The knee immobilizers arrived today. Andy's school PT brought some out to our house this week, and they really helped Andy stand for a longer period of time. He will usually only last 5 minutes or so standing by the couch, before he starts trying to sit down or fall over. The pedi-wrap knee immobilizers helped him to stand for a good 15 minutes. The next time we used them he lasted 25 minutes. He is also wearing AFOs underneath.

We have a kid walk gait trainer, but when we place Andy in it, he just sits in the seat. After having the knee immobilizers on, Andy cannot sit in the gait trainer, because he can't bend his knees. We went ahead and took the seat off of it as well, so now it's functioning more as a stander. Andy does not take steps right now. We are really just working on getting him to stand independently, and also crawling.

I'm very pleased with this purchase, because it is helping us to get more use out of the gait trainer. When we first ordered the gait trainer, Andy would actually take steps in it when we'd propel it forward for him. Currently, he won't step at all, when just in bare feet or wearing the AFOs only. He just isn't ready to take steps, especially when he doesn't know how to stand on his own. I'm hoping after working on this all summer, my son will be able to stand independently. I can't wait for that day. Realistically, knowing that it took him several months to learn to sit on his own without falling down, I think independent standing will take 6 months of therapy. Hopefully, not much more.

Tuesday, April 3, 2012

2012 Chrysler Town and Country

We got a mini-van! A 2012 Chrysler Town and Country, and we love it. I was resisting getting a mini-van for the longest time. I really liked my sedan, and lucky for me we are going to keep it around for my husband to use. Or for those seldom times I am alone, running out for a pedicure... Back to the van. It's so great. I love walking up to it with the doors open already, and Andy on my hip, ready to load him in with plenty of room in the garage. No more maneuvering around a door. Also, with the keys in my pocket or purse, I can just tap the handle to unlock the van, and get the sliding door open. I don't have to have the keys out, they just have to be in the vicinity of the van. Don't even need a key to start it, the key fab just has to be in my pocket, or in my purse on the floor of the van.

The DVD players are great. Gabby wants to watch something different from Andy, so now they can both be happy. Andy is going through a huge frustration and crying phase right now, so I am looking for any way to keep him happy during our drives. Things have been going well so far. The convenience of this van is really taking a lot of stress out of getting out and about. Andy is really happy watching a video in this picture. His sister can watch her own video with wireless headphones on. Andy will wear the headphones too, but will knock them off his head after a while. If both kids wear the headphones for their movies, then I can just listen to music.

We have so much more room, I was trying to make my sedan work, but we were starting to feel quite cramped with all our things. I started to wonder if having more space would help cut down on Andy's crying so much while commuting. So far, I've noticed far less crying.

I would definitely recommend this vehicle to other moms who are contemplating it. We love it, with no regrets.

Sunday, April 1, 2012

New Medical Team for Andy

I am in search of a whole new medical team for Andy. I am looking for new therapists, and new doctors. I feel we have exhausted the services of everyone we have seen so far. They have nothing more to offer us, or we would have gotten it already. I don't want to feel failed by his doctors and therapists. I want to feel that they are truly helping us.

I was told of a child with cerebral palsy who is doing wonderfully after a few weeks of therapy which involves a lot of swinging at the physical therapy office. The parent is starting to notice things coming together for her child, and has reason to believe the only thing that has changed has been all the swinging motion this child has been experiencing. So of course, I am trying to fit in at least ten minutes of swinging into Andy's day, and I am also getting Andy an appointment with this office!

I need new therapists with new ideas. I'm tired of therapists who are stuck in a rut with what they show parents. If the things you show me aren't working, we need to find new things. I've you've got nothing else for me, then I'll find someone who does. I need someone that can help show me how to get more brain connections going through physical actions. I think the therapist that is swinging the child around is onto something. She is giving him the motion his body needs to start making connections.

I've seen the research on childrens' cognition that aren't moving around by age two, and it frightens me. Movement helps cognition greatly, and if Andy can't move around I've got to move him/swing him around so he gets this. Even if only a little, every bit has to help.

We have a scooter from Andy's school right now that I am moving him around on his tummy daily. He will also pivot around on the scooter board to reach for toys. Andy's current school therapists are good, but he will be aging out of the program soon. Hopefully, we will love the therapists at his undetermined future preschool also.

He will be seeing a new neurologist this month, possibly a new physical therapist and a new physiatrist in June. I am also checking out a second possible preschool for my son for this fall, since I didn't care for the first place I saw.