2014 - here we go!

I knew this year's going to be extremely difficult. I was prepared for it. Still not nice though. First my FIL spent a week in hospital (he's fine now). Today my stepmom was admitted. And it's not sounding good. Also, we had Boeboe's psychiatric visit, and it was both a good and a bad visit. Maybe, for the sake of those with kids like mine that lands up on this blog after a search, let me expand on this for a moment.

Boeboe's been put on Risperlet, the generic of Risperdal. Firstly, it was for anxiety, and secondly for psychosis. She went onto 0.25mg per day the first 2 weeks. Then on 0.5mg for another 6 weeks. The first 2 weeks went very well. She immediately, within 24hrs, noticed that it made her less angry. I was amazed.

Shortly after going on the double dose, she had the following changes:

• She was much less angry - almost no temper tantrums. No screaming fits.
• She was more easily irritated, and less patient and less empathatic.
• She was more mature. Having conversations on a 10-year old's level. Playing like a 10-year old. Suddenly, she said she's too big/old for playing with her dolls anymore.
• She was level-headed, calm, serene. Not bubbly anymore.
• She was almost sad (she denied being sad). Very introspective. Smiling less. Laughing less.
• She had very little appetite.
• She got frightened very easily.
• She still had some general anxiety, especially the small things. Bigger things she handled better.
• She had worsened separation anxiety.

I say "was" and "had" because it only lasted a month or so. The past 2 weeks, all of those reverted. Some things completely, but not everything. It was the strangest thing. Suddenly, she was angry again. Yelling, screaming, throwing temper tantrums. She wasn't as irritated, nor as impatient anymore. And she was our little girl again that are soooo empathatic towards others, especially those smaller or weaker than her, like animals and babies. Suddenly, she was less mature again. She played on a 5-year old level again. She couldn't hold a mature conversation with me any more. She suddenly started playing with her dolls again. She returned to her bubbly, excitable self. Running around, or more like darting, being over-the-top, happy, laughing. She lost the "sad" expression, she wasn't as introspective. She got her appetite back. She still gets frightened easily. She still had general anxiety. She still had separation anxiety.

It was extremely interesting, if I don't look at it from a mom's perspective. Seeing her change so quickly. And then saw her revert back right in front of our eyes. I loved having the quiet, serene little girl who didn't scream at me, who held a conversation with me, who didn't throw tantrums. But, it was so good to see my little girl happy, laughing, smiling again when the pills stopped working. Playing with her 5-year old brother like she used to, playing with her beloved dolls, eating breakfast again.

So we took her for her follow-up today. She's been prescribed an even higher dose of the Risperlet (0.75mg) and another anti-depressant (zoloft). The psychiatrist said that it sounds to her like we had a good month on the risperlet, and that it stopped working because the dossage isn't high enough for her. The anti-depressant I believe, is to take care of the anxiety that wasn't helped by the risperlet. I felt guilty for enjoying an angry-free Boeboe, when it surpressed all her emotions. But the psychiatrist told me that it was better for Boeboe as well, when she wasn't this angry person all the time. Boeboe vocalised it. At least twice. The third time I asked, was about 2 weeks ago, and she said the pills doesn't make her feel different anymore. Shortly thereafter I noticed her returning to what she was before them.

So we'll give it a go. It's not like she was sad, unhappy or such. It was just strange to suddenly have a mature Boeboe in the house. But, when she was gone, I missed her. But, it also was so good to see the old Boeboe back. Very confusing!! I'm just following the psychiatrist on this one, because as a mom, I wouldn't want to be forced to choose between an overly happy, childish, angry Boeboe, and a calm, quiet, serene, mature Boeboe.

Oh, and by the way, if you're confused about how a child could both be very happy and extremely angry - welcome to our world!! Hahahaha. :-)

The psychiatrist still feels strongly that it's VCFS causing everything. She mentioned something else today that Boeboe had/has, again pointing to VCFS. I feel like a pendulam, because just this past week, I stumbled on 16p11.2 duplication during my research. And it fits Boeboe like a glove. Honestly, everything I read, made me think "this is Boeboe". Except for seizures. She never had any seizures as far as I know. Oh well, we have no choice other than just wait and see. I just hope we get some answer eventually. Whether it be 22q or 16p, a deletion or a duplication, what difference does it really make? Well, to be honest, I'm hoping 16p rather. It just seemed a little milder, a little better prognosis. Maybe it'll be something totally different. Or, maybe, we'll never know.

Just a last note before I go to bed. Monkeyman is starting formal primary school on Wednesday. It worries me. The holiday made him tired. He's not used to having 3 siblings around him day after day, demanding him to play with them. I scheduled regular rests inbetween play, forcing them to sit or lie down without anyone of them noticing (playing a movie and ordering them to watch it "while baby is napping", else their noise wake her up). It helped. But still, he was deadtired by the evenings. So how's he going to handle going to school for 5 days a week, 5hrs a day? He's only used to 3x a week, 4hrs a day. His previous teacher said he would play along at school, then suddenly just withdrew, sitting alone somewhere. After 10 minutes, he'd jump up and join the group again. She allowed him to do that, because she knew him from birth, about his tiredness. So tomorrow I'm seeing his new teacher, to ask her to keep an eye on him, to allow him to pace himself, to reserve his energy. I hope she'll be accomodating and sympathetic. I believe she will. She knows me already, she was Mr N's teacher as well, 7 years ago. Gosh, we've come a long way. Seven years ago I scared the poor teacher by dropping an epileptic child onto her lap. Now, it's a heart-disease child. Thank God we can't see the future. It would've been too much for me.