2.04.2013

It was a relatively good week, that meds-free week

Apparently that last post put the whine meter arrow into the red, as my mom has asked if she can come up and help out for a bit. Which is very sweet of her. But I should definitely let you know that things are better now. It's definitely better for me to not be sick.

And here is where we are today: Leo is off Seroquel. He only spent ten days on it, total. He was agitated and upset on every one of those days, and everyone in his life noticed. His behavioral psychiatrist agreed that it was not a good choice, based on my reports (and possibly, the sounds of Leo being upset in the background while we spoke over the phone). He asked us to check back in after Leo was off meds for a week.

It was a relatively good week, that meds-free week. As the only benefits of Seroquel for Leo were soporific -- I'll take the happier boy who sleeps less, thank you. Matters were less good when he was bored or unable to find an outlet for his energy, but that is also true of his sisters. Happier Leo meant a much happier me.

We visited the allergist four days ago, which was both helpful and slightly amusing, due to that MD's perspective as a specialist: the previous week's neuro has said that Leo's hospitalization episode was not typical of a seizure -- but the allergist's take was that it was also not typical of an allergic reaction. But, the allergist also spent a full hour with us even though Leo was restless, and even though Mali (who had a tap for a nose and so had stayed home from school) kept interrupting my history with details both relevant ("anaphylaxis AND seizure, Mommy") and not (Minecraft tangents). The good doctor also said he would leave no allergy stone unturned, so Leo will be going back for skin tests, etc., and I have to call Smitten Ice Cream and ask after the ingredients in their Sticky Toffee ice cream, as that's the only food outlier for the day of his hospitalization. He also let me know that the new EpiPens have spring-loaded needles, so you don't need to slam them into the reactioneer's thigh -- just pressing down will make the injection happen, even through clothes.

Today we saw the neurologist who took care of Leo in the hospital, for the follow-up he requested. Though I came in hoping for some answers, any answers, his perspective was that at least Leo hasn't had any more seizures. And that is a good thing, hopefully something that will continue. He said Leo could come in for a follow up and EEG if we wanted, but honestly we didn't see the point. He also encouraged us to get a baby monitor instead of trading off sleeping with Leo at night, because neither Leo nor we are getting the kind of sleep we need to function under the current arrangement. He also said that there were no restrictions to Leo going to theme parks like Disneyland -- Leo just needs 1:1 supervision at the park, and since 1:1 is how our boy rolls at all times, he is good to go.

And Leo is also back on Risperdal as of today (tonight). It was the one-week point, we noted that the Risperdal hiatus was only really because of concerns about his appetite and cholesterol. And even though this past week was better, there were times when it wasn't (e.g., he shattered his iPad screen, and it wasn't entirely an accident). His appetite did not change at all off Risperdal and his cholesterol -- well, hopefully we can manage that with diet and exercise. We are trying to have Leo get in at least two hikes per day on weekends, and he is doing serious workouts (situps, wheelbarrows, etc.) during his respite sessions with Therapist V. Fingers crossed that we can revisit the happy Risperdal place that Leo mostly lived in from 2009 to 2012.

Even with all the goodness of the past ten days or so, Seymour and I are still very tired, because more plates than we can reasonably track keep spinning. He suggested after today's Leo neuro appointment that we get more respite for our boy, and I reminded him that California's autism insurance mandate means additional ABA sessions for Leo start in two days! (After months of hard work on Seymour's part, mind you.) Very excited, they are going to focus on supporting Leo's functional communication.


We are going to focus as much as we can on what makes Leo happy, on ways for him to be happy. Part of that is determining the proper medication that makes him able to tolerate just being in the world, part of that can be purchased (he asks to see the pictures of his Disneyland trip almost every day; I booked him a trip to Disneyland today), and part of that is making sure he has the space and opportunity to be his wild, wonderful, and free self. As he was able to be during an all-afternoon outing to Land's End, Cole Valley, and Golden Gate Park yesterday with beloved friends who just moved here from out of state. They are are our people, they are our herd. Leo was happy. (Mali was too, as was I.)

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Coda: I forgot to mention that Iz turned 14 last month (the shot is from her party). Um what? Two days ago she went to her school's Winter Formal and was by far the most elegant person there. Where she got that style and how she grew up this fast. That latter axiom is really beating the crap out of me and Seymour of late. Holy hell. Grateful she's a neat kid, and a nice kid. She won't accept compliments about her awesomeness because I'm her mother and I "have to say that," but I'm guessing you at least will take my word for it.



6 comments:

  1. Sending all kinds of good thoughts for the success of the Risperdal resumption, among other things! Also, very glad there've been no more seizures. Whew.

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  2. Hey, I recognize those beloved friends' kids! And I'm so jealous!

    This is all very good news. I hope all continues to move in a positive direction AND your mom comes to visit anyway!

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  3. With the meds and our kids, always feels like total trial and error, each child being so different. (I've got that line about 'when you've met one autistic child you've met one autistic child' in my head).

    I still owe you an email still. Charlie's routine burrito stop has also shuttered its doors (thinking of Leo's Indian place closing).

    Always means a lot to know us families, and our super super kids, are on this journey together.

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  4. Glad all is a bit more calm and hope Leo will be back in his happy place. Very sad to hear about these sorts of adventures! Hugs, and high hopes for move ice cream and fun related ones. Congratulations on your beautiful young woman. They do grow up fast. Blink, and she'll be in her third year of college!

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  5. "We are going to focus as much as we can on what makes Leo happy,".

    Yup. I'm happy to read some decision have been made and hope things smooth out. We found that sometimes times like this are followed by lots of growth.

    I have a 14 year old and went to curriculum night last night. It IS shocking, because next year he can get his driver's permit....

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  6. Jenny Saul-Avila6:18 PM

    Glad to see things went well for the med vacation, so to speak. I love that you all get to do such great things outside - seeing your outdoor photos makes me a tad jealous, out here in NJ suburbia. :)
    Also, your daughter is so pretty! I'm sure she's super cool in her personality & smarts too, but that's a pretty photo that she'll be proud of someday, if she's not already.

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