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Some days
Today was one of those days where things didn’t go quite right. Actually it started yesterday when I went to the pharmacy to get a couple of prescriptions filled. Lego Lover alerted me to two he needed so I took them in to fill. As I was giving that to the pharmacist I suddenly thought I needed to get one of mine done too but then decided I still had one tray of tablets left (they are dispensed in punch out trays here).
Last night I found out that one of the prescriptions was the wrong one as it was for a lower dose of the medication. And I was wrong about my own one and it was totally finished.
So I went back today to try again and to sort out Lego Lover’s medications. It seems that the one that was the wrong dose wasn’t finished after all and he’d made a mistake because his last refill was only a couple of weeks ago. The it turned out they didn’t have my prescription on file. Well they had lots of others but not the one I needed. So it was essentially a wasted trip. I came home and tore apart all the places I could think where I might have left that prescription and couldn’t find it. But a while later it occurred to me that I hadn’t checked my purse and that was exactly where it was. Along with Lego Lover’s new prescription at the higher dose.
I had driven there the first time but decided to get my exercise by riding my bike there which sort of worked out. It was kind of chilly by the time I got going and I was concerned I hadn’t dressed warmly enough. But by the time I got there I was feeling a bit warmer and the return trip wasn’t as bad since the wind was at my back.
I noticed there were a lot more people on the pathway today than yesterday. I think timing might have something to do with it as it was late afternoon when I went out. I don’t think I’ve ever seen so many people out there. Well, the number of cyclists was fairly normal but there were lots of people walking so I had to do a bit of maneuvering around and avoiding oncoming traffic too. A bit too congested for me. Tomorrow I’m hoping to ride to Whiteman Park and walk on one of the trails for a change of pace. I’ve been out on my bike the past three days and Saturday was a long ride (2 hours). Besides I need my kangaroo fix. :)
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Progress, I think
I haven’t written all that much about Game Fanatic lately. All things considered, I think he’s doing pretty well. But his anxiety levels remain high and this continues to disable him in many areas of his life. We’ve been plodding along with medications and therapy over the past six or seven months. He sees a psychiatrist every four to six weeks, mainly with regard to medication. Until recently, he hardly spoke at these appointments but he’s been able to have a reasonable conversation the last two visits. Due to his inability to speak, I’ve been speaking to the psychologist about him over most of this year. I find it incredibly exhausting and I started to feel like it wasn’t very productive because the only effect seemed to be that my own anxiety levels have increased over the year. Game Fanatic did start back with his own appointments recently and I think there is some progress in communication there.
Socially, he chose recently to rejoin his fortnightly Sunday Dungeons and Dragons group after being away for over a year. They no longer meet at the original location so this involved going to a new place. Although I know it was overwhelming for him, I think he managed it really well and should improve in the future. He’s not been satisfied with the progress of his weekly D&D group for a while because it moves too slowly. But the Sunday group was ripping along over the three and a half hours they played. It’s also a more mature group and I think this is also beneficial for him.
He’s been on medication for most of this year. There have been two constants throughout this time, one which apparently can take a long time to show obvious effects. The other medication is for attention issues and should have shown effect some time ago. The only thing we’ve worked out, though, is that it decreases his appetite. I think he finally is having some good feelings about some of the positive changes from that now, even though he’d be unlikely to admit it yet. So we will continue to plod along and hopefully progress will continue even though it may be very slow to occur.
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Melatonin wonders
There have been ongoing sleep problems with both the boys for years now. Lego Lover started on a prescription medication to help his sleep a couple years ago. We had some success but the effect seemed to wear off after some time and he had maxed out on the dosage for his age and weight. He takes another medication to help with irritability and anxiety that is supposed to cause sleepiness. Not with our Lego Lover though. It keeps him awake and we had to change the timing of doses to accomodate that. Lately it has been a struggle to get him to sleep before midnight. Game Fanatic more recently tried the same medication for sleep and has had mixed success so far.
I’d heard about melatonin and its sedative effect. But it’s not available for sale in Australia, except by prescription. A month’s supply will easily cost $60-70 for one child. Through the grapevine I’d heard several parents had ordered it from the US quite successfully, even in large amounts. I finally made an order for eight bottles of tablets, which worked out very cheaply. The shipping was another matter but altogether it cost about the same as a month supply on prescription here in Australia. The package arrived about two weeks ago and I started both boys on it.
The effect for Lego Lover has been incredible. We were able to eliminate his prescription medication completely. He’s been asleep before midnight most nights and I’ve even managed to get him to sleep before 11pm a few times. I’m hoping to eventually shift the time to around 10pm. The effect hasn’t been so great for Game Fanatic but he did say it made him feel sleepy a few times, which is far more than he’s said about anything else. In my view, it has been very much a success for Lego Lover, so the risk of such a large order was very much worth it.
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Protected: a bit looney
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Too close
I’ve written in the past about our trials of medications to help Lego Lover feel better about the world. He has always tended towards extreme shifts of moods, although I must admit he has far more of a middle ground now than when he was a toddler and preschooler. Still, his moods shifts can be really alarming and we’ve had incidents that motivated me to take action. Last year we started medication to help with sleep issues and that has been mostly effective aside from the fact he has become resistant to its effects. Still he is better taking it than without it.
A trial of meds to help with anxiety earlier this year didn’t go well. It didn’t go badly either, but we found there was no real improvement and moved on to a different medication near the middle of the year. The current medication has been increased twice now and we feel that there has been some improvement but question whether it’s enough to warrant continuing with it. What has been interesting is that we’ve had positive feedback from two family members and a friend who all agree that he is much better than he’s been in the past. I think the Scientist and I have been too close to him to see any dramatic effect because it’s been gradual for us. But for those who seem him infrequently, it’s been rather significant.
I’ve had to make certain adjustments on the dosing of his medication to avoid the side effect of sleeplessness (which is less common than the drowsiness experienced by most users). We also had to put the previous sleeping medication back into the mix or he would be awake until 2am or later each night. But I think we are on to a good thing right now.
I’ve been attempting to reintroduce Lego Lover into some regular social outings and I think my attempts are going far better than they have in the past. I keep the situations fairly controlled but he is becoming more open to the idea of spending time with similar-aged peers that we often come into contact with. I’m hoping to create some relationships with other children so that he can share his passions with them instead of relying on me or other immediate family members for that role.
At our last pediatrician appointment, I must say I felt totally unsure whether it was worth continuing but the doctor suggested we might stick with it a bit longer and I think this turned out to be the right choice. I can’t help feeling that when we look back in four or five months, we will realize the benefits of sticking it out.
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Tidying things up
It was one of those cold and wet days of winter today. The rain has stopped but there’s a chill in the air which reaches my bones. I noticed my knees are feeling better today but other body parts are still aching quite a bit.
I managed to start some school “work” with Lego Lover today but that didn’t quite succeed and we ended up in another battle. Last week we stopped the medication he started back in March. We couldn’t see any positive effects and he ended up with stomach aches most nights so it wasn’t worth it. He has now started a different medication which has me feeling somewhat edgy. From reading the experiences of others, it’s a bit hard to judge how well the meds will work for any particular individual. The same medication can be wonderful for one and really terrible for another. So far, I think Lego Lover falls sort of in the middle since we’ve not had particularly great or bad experiences. I do think the shift from one medication to another could be affecting the current mood and hopefully he will settle down in the next few days.
During a heated discussion about “work”, I threatened to remove access to Lego for a time. This didn’t exactly eventuate because LL finally decided he would cooperate. I also started digging into his messy bedroom and the end result is it’s looking quite tidy at the moment. It is no longer the hazardous zone it’s been for weeks and months. Lego Lover did attempt to assist most of the time. It often happened that he would rediscover a forgotten toy and want to “test” it out, delaying the end of the task at hand. Finally, I was able to bring in the vacuum cleaner and remove the layers of dust.
Tomorrow I must get into Game Fanatic’s room and clear out all the dust that’s accumulated there. In the past, I would have had to do a similar cleanout of his room but I’ve found the he is doing quite well at keeping it in good order in the last year or so. It’s quite remarkable, really, that he’s always been particularly untidy and now he’s not. But he doesn’t take it any further so dusting and vacuuming is required at the moment.
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A tiny bit of improvement
Lego Lover has been on a new medication for anxiety and depression recently, having started with a low dose and increasing to the full dose last Friday. After two weeks there had been a few positives and negatives, but none we could readily attribute to the medication. Actually, that’s not quite right because he’s had stomach aches and is sleeping earlier with the medication, both common side effects. On Saturday night he told me just as he was falling asleep that he felt like the full dose was making it a little bit better. The irony was that he’d had a massive upset of a “wrong” that had been done to him that day that lasted for hours. He isn’t able to verbalise “what” is better but I find it interesting that he perceives a difference. Is this a placebo effect? Maybe he thinks he’s supposed to feel better…or maybe it is starting to make a difference. The watchful wait continues.