Friday, March 26, 2010

EKG Results/ Tenex

Sorry I was gone so long. We've been sharing a horrid stomach virus all week.
Well, I called the doctor to get my son's EKG results, and she said they showed he was a little tachycardic. That means his heart rate was too fast. I told her he was screaming his lungs out, and she said that then the EKG was normal. So, we decided to start the Tenex.

Tenex is actually a blood pressure medication, but it is also used to treat children with ADHD and autism to decrease aggression, increase attention span, and help them fall asleep at night. The side effects are dry mouth, dizziness, and drowsiness.

Just filling the prescription was a little bit difficult because it only comes in pill form, so I was trying to discuss with several different pharmacists how to administer it to my son since he will not take a pill and he doesn't eat any food so crushing it into applesauce isn't an option. They had no suggestions. Ugh. So I asked if I could get a bottle of flavored syrup so I could mix each crushed half pill into a little syrup and give it to him with a syringe. However, for reasons that have escaped me, they can not dispense the liquid without a medication dissolved into it, and they can't dissolve pills into it, and Tenex does not come in liquid form. So I told them to fill the prescription, and I said I'd figure something out. I bought a pill splitter and a pill crusher, and then went to the grocery store for inspiration. I thought about syrups. Sundae toppings seemed too thick to use with a syringe, and then I thought about grenadine. Grenadine is pomegranate syrup used to make Shirley Temple drinks, and it's delicious and has a low viscosity or thickness. So, I bought that.
I went home, split the pill, put half of the teeny tiny pill into the pill crusher, and the pill was really too small for the crusher because it never became a powder. Then I poured a little bit of grenadine into a medicine cup, which somehow splashed and stained the counter and the floor. I poured in the crushed pill, but some of it stuck inside the crusher. So, I used a knife to try to scrape out the medicine and mix it in with the liquid. Then I sucked it into a syringe, but some of the pill got left behind. So I crushed the rest of the pill with the end of the knife, put some liquid back, and sucked it back into the syringe. Then I went to give it to my son and told him it was yummy. He still spit some of it out. So, I don't know exactly how much he got.

I tasted it, and it didn't taste bitter at all. He just doesn't like anything. It was so frustrating.

Still, I hoped he had gotten enough of the medication in him, and was looking forward to him falling asleep easily and then having an easier day today. However, he was up banging his head just as late as usual, and had just as much of a tough time today with aggression and frustration.

I thought maybe if I give it to him a little earlier it would have more time to work before he went to bed, so I gave it to him late this afternoon. I didn't even bother with the pill crusher. I just smooshed it in the medicine cup with the tip of a knife. I was extra careful with the syrup, and despite my best efforts, he still managed to spit out some of the liquid. Arghhhh. I didn't notice any difference at all. I don't know if it takes time for Tenex to build up, if the dose is too low, or if he's spitting out too much, or if it's just not working.

I was so disappointed. I wasn't expecting a miracle, but I was hoping for a day that was at least a little easier than usual, and I didn't get that. Oh well.

We have a followup with the neurologist in six weeks, so I'll discuss it more then. I believe Tenex also comes in patch form, so that may be another option for us to try.

We'll see.

Sunday, March 21, 2010

EKG Went...Okay, I Guess

I won't get the results for a few days, but we were able to complete the test. My son was in no way cooperative. He started to tantrum while we were still registering for the test. By the time we got into the room, despite the fact that all he needed to do was sit for a few minutes with some stickers on his chest, he was screaming, kicking, and thrashing around. What may be simple for some folks is not simple for him. It was terrifying for him. The technician and my daughter were absolutely shell-shocked. I went into Mom Mode. I remembered our experience at the dentist and started giving the tech directions. I told him to get the chair at his desk and bring it over to face me. Then I told him to sit and face me in the chair, and put a pillow on his lap. I sat my son on my lap facing me, and then laid him back onto the pillow, and I held him there gently and sang to him while the tech did what he needed to do. It wasn't perfect because my son was screaming and wiggling throughout the whole test, and it lasted longer so they could get a decent reading, but we got it done with no drugs, and in one visit, so that made me happy.

That night I was in bed by 7, absolutely tuckered out.

Thursday, March 18, 2010

EKG Tomorrow

Well, we're going to try to get my son an EKG tomorrow. I don't know how they're going to get him to sit still...I have a feeling he's going to freak out and we'll have to get a prescription from our pediatrician for some sort of mild sedative...we have to be careful because sedatives can skew the results. So, we'll see. My son also needs more blood work done tomorrow. We got half done last week, and have to finish the rest tomorrow. They couldn't take all the blood at once, and the blood needs to be drawn a week apart. The tests take a long time to complete, so we have to have the blood drawn as soon as possible so that the tests are completed by the time we return to the geneticist. I know it's a lot to do in one day, but the tests are very quick, so maybe it'll be okay...we can even go to the playground in between to break things up. We've been through much worse. It's best not to make a big deal out of something that isn't a big deal.

Then we can enjoy a lovely weekend of warm weather, our responsibilities taken care of.

Have a great weekend!

Monday, March 15, 2010

Living with PDD-NOS in the Family

I found out a friend of mine from high school has a child with PDD-NOS (that's pervasive developmental delay, not otherwise specified, which is on the autism spectrum). Her son is 12. I was looking at pictures of him on her Facebook page, and saw my son older. Her son looks like mine and wears glasses like mine. She gave me her phone number and I will be calling her soon to talk about her experiences with medications and therapy and advocacy. It will be nice to talk to someone who's been there.

Yesterday my son head butted my 17 month old daughter hard enough to knock her down and leave a bruise on her head. I hope that medication helps. He still needs to get his EKG first because the medication, Tenex, is a high blood pressure medication that's used "off label" for autistic and ADHD kids to help them calm down, sleep, and decrease aggression. The therapists and teachers at school are dead set against it, by I have to protect my daughter too.

Just getting ready in the morning is difficult for my son. He usually doesn't want to get up (although this morning he woke up singing) and bangs his head. He doesn't like to have his diaper changed, so he bangs his head. He didn't want to go to school today, so he banged his head. He wouldn't let me put on his shoes, he insists on wearing his boots. So, I gave in. He won't wear his spring jacket, he insists on wearing his winter coat, but he wouldn't even let me put that on. His not wanting a coat on has been going on for a week or so. I've tried singing, coaxing, having him try to put it on himself, choosing which coat to wear, and asking if he wants it on at the top of the stairs or the bottom of the stairs, but I always wind up having to wrestle and force his coat on. If we go out, he only wants to go in one of our cars. If we want to take the other car, he has a huge tantrum. If we're on the way home and have to stop someplace on the way, he gets upset because we're supposed to be going home. Everything is difficult. Everything takes tremendous patience.

I was talking to a friend yesterday who works with my husband, and she told me how tired he looks. He works three jobs so that I can stay home with the kids. He makes a lot more money per hour on the weekends than I could ever make, and that's why he works and I stay home. We are each other's only source of respite, and we're completely drained. I have a mother's helper come over for two hours a week so I can catch up on cleaning, but my husband and I never have time for ourselves. We've only been out alone twice in the past three years, and that was just for dinner. We're both tired. He works all the time, so I'm home alone all the time. I felt so guilty that he has to work so hard and he's tired. If my son could go to daycare, or if there were someone who could watch him and my daughter during the day when they are sick or, when I have to go to therapy meetings, or when they have to go to specialist appointments, then I could work. I'm very grateful for how my husband works so hard every day, and then he comes home and plays with the kids so I can cook dinner. He's a wonderful husband and father, and I am absolutely blessed to have him in my life.

Sunday, March 14, 2010

Aries - The Ram

I'm not a believer in astrology, but I think it's ironic that my son is an Aries (the ram), and he head butts almost constantly. As my son's head banging has increased in both frequency and intensity, we've been investigating solutions to keep him from hurting himself and us.

We've been working with the neurologist and are looking into trying medication, and we are also working with the entire team at his school to explore behavioral modification techniques. I personally think it's going to take a combination of both, but of course the neuro thinks the meds will work and the school team is dead set against them.

The behavioral modification techniques take time, and because my son bangs his head very hard, bangs his head into glass, and bangs his head against other people, I'm not going to give it a whole lot of time out of safety concerns. I think I'll give them a month and see how it goes. Then I think I'll try the medication if we need to.

The medication the neuro prescribed is Tenex, which is a blood pressure medication. In kids with autism or ADHD, it decreases aggression, increases focus and attention, and has a calming effect. Unfortunately, it can make the kids very tired. It also can dangerously decrease blood pressure, and before it can be administered, my son has to get an EKG. So, that's a little scary. Also, it only comes in pill form, so that will be a challenge to deliver as well.

It's difficult to be judged by the school team who are clearly anti-meds, but I tried to get my point across that I don't want him to put his head through a window, and that he's already injured me, and I'm afraid he'll hurt my daughter. I don't think they get it.

I will do what I've done ever since I've had children; I will go with my gut.

Friday, March 12, 2010

My Son Has the Best Cow Licks

My son has fabulous morning and hat hair. I love it. He has huge cow licks all the time. I don't know what he thinks when I tell him that I don't know how a cow got into his room. LOL

Today when I was brushing his hair, I put in a little spray conditioner first and got it all to stand on end. When I showed him in the mirror, he was hysterical. My son has a wonderful sense of humor.

When he was a newborn, his hair stood straight up too, and I used to brush it straight up on purpose because it was just the cutest thing. Ah, my Boo.

Wednesday, March 10, 2010


My son actually ate a little bit of pretzel. Waiting for the parade to start. Another view.
Fire engines!
St. Patrick Himself.

My son loves parades. This is a little confusing to me because he's terrified of dogs, the vacuum, and my hair dryer because of the noise, but has no problem with sirens and drums. Go figure. However, we always have problems getting him into the bathtub, but he has no problem running straight into the ocean. I guess that's one of the reasons people think of Autism as a puzzle...
Anyway, we went to the largest St. Patrick's Day Parade in Dutchess County, and got there nice and early so that we could get a good view. The parades upstate are geared toward children. Many years ago, I seriously considered moving to the Midwest because of how different the lifestyle is, how people seem more considerate, how important community is, and how they gear community events toward children. I'm very happy to find a similar atmosphere where we live now.
Where there might be a lot of public drunkenness at other St. Patrick's Day Parades, not so at the Dutchess County parade. It is geared toward children. Children make up a large number of the marchers, and the marchers throw candy and costume jewelry to the children on the sidelines. As far as I could see, everyone was very well behaved, including my son, and it was really nice.
My son has a tendency to run away from me, so I wrote my cell phone number on his arm and told him to show someone his arm if he gets lost. I didn't want to keep him cooped up in the stroller, but I'm terrified of him getting lost because he can't speak. However, he stayed right next to me throughout the entire parade, and didn't go so far as a single step away from me. I was so proud of him.
There were lots of bands, bagpipes, drums, fire engines, floats, Clydesdales, girl scouts and boy scouts, and local businesses and radio station personalities. Even St. Patrick Himself was there, and if my camera would always work the way I wanted it to, i.e. actually take a picture when I press the button, I would have had a picture of the front of St. Patrick instead of his back. Oh well.

One of the best things that happened is that my son ate a little bit of pretzel! I always offer him whatever I'm eating, and he always says no. That day he said yes! I was so happy!
I also met a few Girl Scout Leaders who gave me information about a local boy scout leader who is particularly good with special needs kids. My son is turning five, and will be able to enter Boy Scouts, and I think it would be great for him.
So, all in all. a great day.

Friday, March 5, 2010

The Geneticist Who Says Ni!

For anyone who is unfortunate enough to not know of the Knights Who Say Ni, I have embedded a couple of scenes from Monty Python and the Holy Grail with the Knights Who Say Ni. I highly suggest seeing the whole movie as it is one of the funniest movies of all time.

Yesterday I brought my son to a new geneticist. From what I've read about him, he seems excellent.

The only problem with the appointment was that throughout the entire time, all I could think of was that the doctor sounds like the head of the Knights Who Say Ni! I was certain I heard him whisper, "Ni! I say to you!" I feared that I might be forced to find a shrubbery...or worse, two...or even worse, he would ask me to cut down the mightiest tree in the forest with a herring! Oh dear. Luckily, he just sent us off for blood work.

Like many doctors, he didn't have much of a bedside manner, but I'm really there for a diagnosis, so I don't care.

I really didn't learn anything new yesterday. We're going for more tests. The doctor is starting out with looking for metabolic syndromes because they can be associated with many of the problems my son has.

The results of the tests take months...most genetic tests take a long time. So, we'll see what happens. It would be nice to find some reason why my son has so many problems and to maybe get some sort of prognosis, and to be sure that there aren't any related conditions that we haven't been looking out for. We'll see.

Wednesday, March 3, 2010


I didn't finish cleaning my terrace after having our food outside, and we had sherbet that had melted. I didn't realize that it had leaked out of the container. When I came inside this afternoon from getting my son off the bus, I was horrified to see a little bird struggling in a pool of was completely stuck to the floor, it couldn't move, and in its desperation, its movement was pulling out its feathers. I didn't know if it had broken its wings, and I really didn't think it was going to live.

My mind went immediately to a commercial on television for Dawn dish detergent where they were washing a duck that had gotten stuck in an oil slick. So I got a little cup of warm water and put a little Dawn in it, and poured a little bit over the poor bird. This loosened his feathers, and he was able to move. I then poured some plain warm water over him to try to dissolve the rest of the syrup in the feathers.

The poor thing hid in a corner, and I thought for sure that it was hiding so that it could die.

I went into the apartment to get a bucket of warm soapy water and a brush to clean the terrace so that I wouldn't torture another poor birdie, and the bird disappeared.

I finally found him in the fallen tree outside. This was a good meant it could fly. As the bird preened and preened, I could see that it was a tufted titmouse. He's been back to the feeder, and I think as long as he can fly and eat, he should be okay. I put a shallow bowl of water outside in case he should like to take a bath, but he hasn't used it. I really hope he's okay. I love birdies, and the last think I would ever want to do is hurt a birdie. I feel so guilty that it was because of my own negligence that the birdie was hurt, but I am happy that I think I managed to save the poor thing.

Tuesday, March 2, 2010

Winter Weather Advisory - Yeah, Right

Well, we had a winter weather advisory, but we wound up getting about 2 feet of very heavy snow. The tree outside our terrace fell...although I will miss our tree, its shade, its birdies, and the privacy it provides, I'm just glad it fell away from us and not on us. Here is our fire escape.
I was very concerned about the roof collapsing from all the heavy snow, but it didn't. I did hear that a roof on another condo complex did collapse, however. I hope it's not true.

Here is our shower. We had no electricity, no heat, and no hot water. We did have a trickle of freezing cold water, for which I was very grateful as many people had no water and had to melt the snow. I heated water on the stove and we used a cup to pour the water over us like a shower. It worked, but boy oh boy was it cold once we were wet!!!!!

This is why we had our trickle of water....Our water pumps are electric, so a water company came to fill up their trucks with water from a fire hydrant and deliver the water to our water tank. They worked all through the night and most of the day to do this.

When the snow finally stopped on Saturday, it was time to play, "Let's Find the Car"!

Then we drove around looking to see what the damage was like and found many more broken and fallen trees.

We had a crank radio, which is one of the best presents we ever got from my Mom, which we used to keep contact with the outside world (well, and our cell phones still worked).
Except for some difficulty with the adjustment for my son who intermittently banged his head repeatedly against the floor or wall because nothing happened when he tried to turn things on, the kids had lots of fun. We blew up some gloves into balloons, the kids helped crank the radio, we sang, we read books, and the kids ran around with lanterns in the dark.

It was so cold in our apartment that it was difficult to sleep. We put the kids in a lot of layers and bundled them under deep comforters. I think we did okay.
I'm glad it's over, though. Being in the dark and cold is really not pleasant, and having to use cold water all the time just makes the chill even deeper. We shivered ourselves to sleep at night, and I kept thinking about "The Long Winter" by Laura Ingalls Wilder and was glad that we didn't wake up with snow piled on us, we were cranking a radio and not a grinder to make bread, their only food, and that it was only four days and not seven months. I was grateful that it was winter and we could put our food on the terrace so it didn't spoil, if we did lose water there would be snow to melt, and we could keep putting more clothing and blankets on where as if it were hot, you can only take off a certain amount of clothes before there's nothing left to do. I was also glad that we had a home and weren't outside and homeless.
So, I'm really looking forward to Spring in a big way, and am grateful that we made it through all home together safe and sound even if a little cold and tired for just a little while.