Wonderfully Imperfect

Gus has been off Strattera for a few days now. I will admit, he's a little less focused and a little more hyperactive. I find myself having to tell him to do something ten times instead of eight. And ya know what? I'm so happy!

The Strattera seemed to suppress something essential in him. He became 'dulled.' I can't go so far as to say he was like a zombie, but he certainly lost his light. Sure he was calmer, but he wasn't Gus. Even the bus driver, who hadn't seen him since last summer, immediately noticed the difference.

As much as I'd like him to be able to focus, I don't want to lose all the parts of him that make him special. He's laughing again. He's running and animated (boy is he running and animated!) He's joking and singing - exuberant! I'd be an idiot to not want this version around. And he's sleeping again, thank heavens! One very interesting thing - I took him to a crowded beach today and he didn't have single problem. (He had two minor incidents last week, in a much smaller crowd of beach-goers.)

I'm sure that there are many people in the world who think the dull version is more socially appropriate, just because he was quieter, but they can, quite frankly, bite me.

Freedom

Gus's last day on Strattera was Monday. It's a huge relief, and I feel like I've got my son back. He's more animated and he's eating again, thank goodness! So far there haven't been any major complaints from school. He was a little squirmy on the bus yesterday afternoon, and he was a little chatty and loud on the bus this afternoon. Otherwise, no unsafe behavior.

I got to observe him at school yesterday for a little while and the teacher seemed pleased and impressed by his encyclopedic knowledge. I'm sure she could have done without the low-level talking to himself, but she took it in stride.

He's been showing signs of sensory turbulence lately. He'd been okay with noise for a long time, but lately, since the spring, he's been covering his ears more and more. Now there's a student in the class who screams randomly. We're considering noise cancelling earphones.

Amazing how much easier I'm breathing this week.

Strattera Update

After a brief period off of Strattera, Gus has been back on for a little while now. He started at 10 mg and then increased to 15. I took him to the doctor last week, it had been almost a month. The word she used to describe him was 'loopy.' He was not running all around the room like he usually would, but he wasn't exactly what you could call focused either. Instead of his body buzzing, his brain and mouth were motorized. He went on and on about Who Framed Roger Rabbit, very perseverative and going a mile a minute. Our pediatrician wasn't sure what to make of Gus's behavior, so she consulted with the specialist.

The specialist felt that Gus was not on a high enough dosage to see any result. He wanted to go for 36 mg a day, but the dosing guidelines limit his size/age at 25. So he started on that level this weekend.

The only real difference I see is that the meds are making him subdued and sleepy, but I don't know if that equates to focused. He's less responsive when I call him and still needs lots of reminders to complete tasks like getting dressed, maybe not as many as before, but not a huge improvement there. On the other hand, he is having some sleep issues (waking up before 5 am randomly, getting out of bed several times at bed time, sometimes waking in the middle of the night). He's not eating normally. Several times I've had to feed him. He's still anxious and has been getting grumpy on & off, but he's expressing himself more clearly.

This morning, about an hour after taking the meds, he started complaining of feeling sick, tired and of a headache, which is very out of character for him. Even when he's sick, he rarely complains, which told me that he had to be feeling pretty bad, at least for a while.

So I don't know. The side effects haven't been earth-shattering, but neither have the positive results. I'm thinking this medication may help a bit, but ultimately is probably not worth it. We'll have to let him adjust to this new dosage, but it seems more pessimistic by the day.

Can't Tell If It's Working or Not

The higher dose of Strattera may or may not be working. It's hard to tell. Gus has been generally calmish except for little bouts of hyperactivity (in varying degrees of intensity) in the evenings. He's had decent days at school, but he's been crying a lot. Yesterday I asked him if something was bothering him and he said, "My head felt like a squished plantain." It seems like the medication may be helping a little in some areas, but overall, not a great difference. And the sensory issues still seem heightened. The impulse control, which is what we were hoping to help the most, is still not there. Yesterday, Gus decided it would be a good idea to hang from the curtains, and the curtain rod was pulled clean out of the wall. This was not the first time it's happened. Tonight my husband caught him chewing on the controller wires for his Gamecube - again seeking that oral sensory stimulation. He hasn't had problems with that in quite some time.

So I don't know that the medication is worth it, especially with comments like the one yesterday and some of the behaviors we're noticing.

Unexpected and Curious

Today marks the fourth day of Gus's Strattera re-trial. Our first go at the medication ended after about six days because his behavior became wild on the afternoon of day six - to the point of endangering himself and the other people on the school bus. The doctor and I worried that increasing the dosage would make matters worse, but the results have been surprising.

Gus's behavior at home this weekend has been vastly different than what we heard from school. He's been very calm for the most part, sleepy even toward the afternoon. Yesterday there was one brief bout of grumpiness because he wanted to play a computer game and his sister wanted to watch TV, so he locked himself away in his room for a while. But there's been no name-calling or rudeness. As a matter of fact he was at a birthday party at a very crowded place and was just great. Around 5:30 he got a little burst of hyperactivity; last week it came a little earlier than normal - about 3ish.

One small issue he had last night was that he kept getting out of bed whereas he is usually the first to fall asleep. It was especially weird since he was completely exhausted from the day. But sometimes being too tired can effect the ability to fall asleep, so I won't panic over it.

Now, he'll be getting to that point where he started having serious problems early in the week. It seems that the increased dosage pushed back the bout of wildness enough that he hasn't had any bus trouble yet, but we'll see. If there's no major change for the worse on the bus, I'm willing to keep him at this level for a while longer and I'll probably even let teacher know by Tuesday or Wednesday, depending on when I speak to Doc. I'm sure she'll be pissed that I didn't tell her sooner, but scientific studies are often done blind for a good reason.

Maybe This Is Not the Right Place

With all the talk about Alex Barton, I'm thinking a lot lately about Gus's school experience. I try not to take things personally or to get too freaked out about the reports of what Gus is going 'wrong' during the day, but when it's every day, sometimes I have to wonder if he could possibly do anything right in the teachers' eyes.

Then there was the question of medication. They were pleased as punch when I finally agreed to try it. But I am getting a sense of annoyance because I took him off within the first week. The reports from the two days he was off the meds were good until I let the teacher know that he;d been off the meds. Then the story changed. All week, the reports have been negative, and I'm not saying his behavior hasn't been as reported, but I have to wonder if they are more negative because the teacher thinks he's off the medication. He's been back on the medication (unbeknownst to the school) and the reports have been the worst yet. I got a very terse note from the teacher today about how Gus was yelling at people today, throwing himself on the floor and being generally rude. Again, I don't dispute it - I saw how he got on the lower dosage of this medication. I just wonder if her annoyance would be as apparent if she knew that he was still on the same drug.

I'm also thinking that it may have been a mistake to take him out of his previous program for one more geared toward mainstreaming. Yes, he's getting more in the way of academics, but I think the staff in the other program was a bit more...understanding about certain behaviors. I could walk into his class last year at any given time and just feel the love toward my son. There is very little, if any toward him where he is now.

I understand how teachers can get burnt out and fed up with students. I taught for four years. I can understand it, but that doesn't mean I want a constant stream of 'you're not good enough' being hurled at him for another year.

Should I get the district to put him back in his old school? Will that give him and even worse message about his capabilities? I just want my kid to learn and be happy - is that too much to ask? He's in a special needs class for a reason - because he's got special needs. One of those needs is for understanding and compassion, not irritation on a daily basis. And I increasingly doubt that one of those needs can be met from a little brown bottle.

Pardon Me, But I Think You're Full of Poop

An IM conversation I was having with a good friend:

"I hypothesize that if there were less a*holes in the world, our kids would have an easier time."

"That is also amazingly true, but for some reason being an a*hole is acceptable. Because it is the norm, I guess?"

Gus was on Strattera for six days. Of those six days, the first day was fine; second day he needed prompting in the afternoon; fifth day (a Monday) he had a bad day; day six he was okay at school, but wouldn't stay in his seat on the afternoon bus. Honestly, these reports could have come at any time, whether on the meds or not. They were pretty unremarkable except for the school bus incident. The end of last week he had two decent days off the medication.

Today, his first day back from the Memorial Day weekend (he never has a good day after a weekend or holiday), also the day the teacher found out that he'd been off the meds for a few days, he apparently had a terrible day. I got a whole laundry list of things he did wrong today. And suddenly it seems that she had a feeling he was off the meds.

I think she's full of something stinky.

I'm so fed up with the ridiculous expectations and the negative attitude. Not that Gus is an angel, but he's a pretty good kid. Seven-year-olds can be defiant, so can five-year-olds and teenagers. Why must my kid be singled out every day of his freaking life because he's not medicated?

We'll probably try a different dose of the Strattera before switching to the Focalin. Heaven help these people if he gets so out of control that he does something really dangerous to himself or if this medication harms him in any way. Heaven help them.

Edit: Doc and I have settled on a slightly higher dosage for a few days to step him up slowly. I have a headache now.

I sent Gus to school today without any medication. The report from his teacher was that it was a pretty good day with only a couple of issues - he didn't finish his work fast enough to get computer time and then he got upset. Just like yesterday. I wonder if the level of improvement we saw was just a placebo effect. Maybe he was just having good days and they had nothing to do with the Strattera.

He had a better time on the bus until he was almost home and then he got a bit unruly again. I can see that he's nowhere near as wild today as he was then. Yesterday he came in and was crashing into the door and was just running non-stop. He had a burst of energy when he got off the bus, but he's fairly calm at the moment.

Gus also slept better last night. I think that probably has more to do with putting the blackout curtains up again.

So, I'm convinced that we are done with Strattera. I've ordered a homeopathic ADHD remedy to try over the weekend, just out of curiosity, before I talk to his doctor again on Tuesday or Wednesday. She had wanted to try him on Focalin, which is a stimulant(similar to Ritalin, but longer lasting).

As an interesting aside, I read that 100mg of coffee has a similar effect on the brain as the lowest dosage of Ritalin. Maybe I should just get Gus to start drinking coffee?

Getting Worse

Gus was up at 5 am today, and by 5:30 was completely off the wall. Yet his teacher reported that he had a pretty decent day, only "got caught" not doing his independent work twice. However, this tells me that he wasn't focusing. The real disturbing news came just now from the bus monitor.

He's always been especially good on the afternoon bus, so good that he hasn't needed to be in his car seat. Today, the monitor said she had trouble with him staying seated. Right now he's hopping around like a jack rabbit on speed. I'm used to high energy and racing around from him. This is way beyond his usual level of hyperactivity.

I'm waiting for a call from the doctor. If he's like this on the lowest dosage, will he get worse by increasing it, or will an increase have the desired effect?

I want to scream right now. I hate, hate, hate this process. It's hard enough to watch my son when he's struggling for control of his behavior and his body under normal circumstances. To think that something that I'm making him take (he spit it out this morning) is making his struggle so much worse, makes me want to kick myself. But they've said that it can take time for the body to adjust. What the hell am I adjusting to though?

Edit: After a conversation with his doctor, we've decided that Gus is going to stop taking the Strattera, at least for now. We'll see how he is for a few day s and then decide if we're going to increase the dosage. I'm very worried about that prospect and so is the doctor. She expected that he'd have no noticeable response, if any. So we'll revisit after the holiday weekend.

Gus was very excited about his sister's dance recital yesterday. He was so excited that he got very emotional, crying because he wanted to leave already and the anxiety was too much. When he got to the show, he enjoyed himself immensely. He danced at his seat (my sister said he reminded her of our mother who always did the same thing at concerts) and sang along to the music. Unfortunately, there were people sitting behind the family (I was backstage volunteering with my daughter's class). So they took Gus out for a walk around the school, let him run around the gym for a bit to blow off some frenetic energy. He came in for her second number and made a break for the stage (during someone else's act). Fortunately, his Nana caught him. As soon as he saw his sister perform, he had to be taken home. The whole thing was too much for him.

And that was on the medication.

It didn't seem to help all that much. It's pretty much what he would have done had he not been on the meds.

Granted, he may not have been taking it long enough, or he may need a slightly higher dosage. Right now, the benefits have been minimal at best. But at least he enjoyed the show.

Promising, so far

The report from Gus's teacher was pretty good at the end of day two. He had a good morning but needed more redirection in the afternoon. I was concerned that she'd be less than objective and gloss over negative behavior out of a desire to not have me give up the medication trial too soon. I should really trust her more by now, but I'm not a trusting sort by nature, so I just have to work within my own limitations.

I didn't notice anything before he left for school, but in the afternoon he had stayed awake on the bus as usual. The biggest thing was that he was much calmer than he usually is. He wanted to write a story for my sister who was coming to visit and he sat down several times to watch television. He usually races back and forth through the room, crashing into the doors. He was still hyper, but it was definitely a subdued hyper. I had to laugh at the look on my sister's face when I pointed out, "this is calm."

I'm still somewhat peeved about the meds, but perhaps I'll get over it in time, if we see a real improvement in Gus's ability to control his impulses and focus at least in school. I must keep reminding myself - this isn't about me; it's about what will help him to learn and function safely in the world.

Strattera - day one

I'll apologize now if this happens to get boring, but I need to chronicle Gus's reactions to the meds and this is more reliable (unless I somehow lose my computer) than physically writing down. I may just do both.

I took Gus to his pediatrician yesterday and she took some baselines of all his vitals. He'd already had his liver function checked not long ago when he started his genetic testing. So we started him on the lowest dose - 10 mg - this morning.

An hour and a half later, he was racing around, but he got himself dressed, down to his shoes, with minimal redirection. He's responding when I ask him questions & doesn't seem zoned out at all. Right now, he's watching television quietly. He's covering his ears, which he's been doing a lot, but not usually in the house. He usually covers then when he's going to the bus.

As much as I didn't want to (just to see what the reports were without them knowing he's on medication) I had to tell his teacher that he's started the medication trial. Heaven forbid he suddenly has a bad reaction or an accident in school - they'd need that information. So, we'll see what she has to say this afternoon.

I am not happy about this latest turn of events, but if it helps him I guess I can live with it.