Sunday supper at the diner, again
Yeah, we went to the diner again on Sunday night after going to……………the diner on Saturday night. And, despite the plethora of diners all across New Jersey, we managed to end up at the same diner. Charlie had a burger both nights (ok, Sunday night he got coleslaw on the side). To be fair, I got an omelet both nights (but it was broccoli Saturday, a Greek omelet Sunday). And Jim rather amazed me when he ordered an omelet on Sunday with two vegetables.

We had a peaceful weekend. Charlie has been taking 1.5 mg of Clonidine, since last Tuesday night. It made him incredibly sleepy throughout the day at first—bit of a problem at, ahem, school (we had informed his teacher about the new med and she's had other students on it). Bit of a better thing at night. Charlie has been taking 6 mg of melatonin for the past two or so years. I'm hoping that the Clonidine might be enough; in the mean time, am giving him 3 mg of the melatonin plus 0.5 mg Clonidine (he takes this med 3x/day, in 0.5 mg doses: 7.30am, 3.00pm, 8.30/9pm).

I'm ok writing about what meds Charlie takes in public, but the dosages and how we're trying to go off one med (Risperdal) while trying another and what we might still add (an anti-seizure med, the new neuro thinks)—the finer details—I'd rather not go into so much. One reason we've had to really look into medications is because of Charlie's size (which I hate to keep bringing up like a broken record but it's a simple reality; he's almost as big as Jim) and because of some of his behaviors. Tantrums in a 132 lb. child (because he is still a child, he just turned 12!) are not easy to handle and when Charlie is really anxious and the adrenaline is flowing, he can be very aggressive. Properly managed, he is on his way to calming down in about 5 minutes but now we've had to talk a lot about "safety," as in his and ours (including his teacher's and the aides). 

It's been so far, so good with the Clonidine. I was gone all morning till 2pm at graduation for my college. After getting on the Parkway, I called Jim: "I'm sorry! I'm just leaving now, kept running into someone to talk to……….." Jim offered the equivalent of a shrug, as much as can be communicated from land line to iPhone. I asked what they'd been doing: "Oh, not much." Pause in which I could hear the shuffling of many papers.  "But I'm getting out the bikes, right now!"

Hoping you had a peaceful easy-feeling weekend too. With or without omelets.
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Comments
5 Responses to “”
  1. Joe Kras says:

    The daytime drowsiness on the clonidine usually goes away after awhile.
    Having lived in Philly in the past, I miss NJ diners. Jersey raises diners to an art form unto themselves.
    Joe

  2. mom-nos says:

    Bud is much smaller than Charlie (about 80 pounds) and has been on 9 mg of melatonin since the fall of 2007.
    I’m also hoping to transition Bud off Risperdal this summer, but we need to get his other meds adjusted first. It’s such a moving target.

  3. mom-nos says:

    He’s on .5 mg of Risperdal (.25 twice a day) and 50 mg of Strattera (25 mg x 2). He was on Zoloft (25 mg am and 37.5 mg pm) until a couple of weeks ago, when we switched to fluvoxamine (Luvox). We’ve been slowly increasing dose.

  4. autismvox says:

    thank you—anxiety seems to be a major problem for Charlie and often leads to “behaviors.” have been wondering if the Zoloft is enough for him.

  5. autismvox says:

    When Charlie was younger, too much Zoloft made unpredictable, as in (excuse the expression) crazed. He seems to tolerate it more now. After a brief and very unfruitful Ritalin trial, we’ve been avoiding ADHD/attention type meds for Charlie. Charlie’s ocd is definitely there but can be controlled — hope the Luvox starts helping more.

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Sunday supper at the diner, again
Yeah, we went to the diner again on Sunday night after going to……………the diner on Saturday night. And, despite the plethora of diners all across New Jersey, we managed to end up at the same diner. Charlie had a burger both nights (ok, Sunday night he got coleslaw on the side). To be fair, I got an omelet both nights (but it was broccoli Saturday, a Greek omelet Sunday). And Jim rather amazed me when he ordered an omelet on Sunday with two vegetables.

We had a peaceful weekend. Charlie has been taking 1.5 mg of Clonidine, since last Tuesday night. It made him incredibly sleepy throughout the day at first—bit of a problem at, ahem, school (we had informed his teacher about the new med and she's had other students on it). Bit of a better thing at night. Charlie has been taking 6 mg of melatonin for the past two or so years. I'm hoping that the Clonidine might be enough; in the mean time, am giving him 3 mg of the melatonin plus 0.5 mg Clonidine (he takes this med 3x/day, in 0.5 mg doses: 7.30am, 3.00pm, 8.30/9pm).

I'm ok writing about what meds Charlie takes in public, but the dosages and how we're trying to go off one med (Risperdal) while trying another and what we might still add (an anti-seizure med, the new neuro thinks)—the finer details—I'd rather not go into so much. One reason we've had to really look into medications is because of Charlie's size (which I hate to keep bringing up like a broken record but it's a simple reality; he's almost as big as Jim) and because of some of his behaviors. Tantrums in a 132 lb. child (because he is still a child, he just turned 12!) are not easy to handle and when Charlie is really anxious and the adrenaline is flowing, he can be very aggressive. Properly managed, he is on his way to calming down in about 5 minutes but now we've had to talk a lot about "safety," as in his and ours (including his teacher's and the aides). 

It's been so far, so good with the Clonidine. I was gone all morning till 2pm at graduation for my college. After getting on the Parkway, I called Jim: "I'm sorry! I'm just leaving now, kept running into someone to talk to……….." Jim offered the equivalent of a shrug, as much as can be communicated from land line to iPhone. I asked what they'd been doing: "Oh, not much." Pause in which I could hear the shuffling of many papers.  "But I'm getting out the bikes, right now!"

Hoping you had a peaceful easy-feeling weekend too. With or without omelets.
Comments
8 Responses to “”
  1. shannon says:

    I am so pleased to see your safe space materialize again. Thank you for sharing it with us. Very much looking forward to unfiltered Kristina, and more Charlie pix!
    The meds dosing, and ongoing calibrating and experimenting: Ay yi yi. I am especially grateful to you for sharing this so frankly as I so often feel we’re walking in your footsteps, but four years back. But, yes, safety is critical — for Charlie as well as for you. I am glad that yours is the thoughtful and considered version of “whatever it takes.”

  2. Joe Kras says:

    The daytime drowsiness on the clonidine usually goes away after awhile.
    Having lived in Philly in the past, I miss NJ diners. Jersey raises diners to an art form unto themselves.
    Joe

  3. mom-nos says:

    Bud is much smaller than Charlie (about 80 pounds) and has been on 9 mg of melatonin since the fall of 2007.
    I’m also hoping to transition Bud off Risperdal this summer, but we need to get his other meds adjusted first. It’s such a moving target.

  4. autismvox says:

    mom-nos—may I ask, what other meds is Bud on?
    Charlie now takes 1.0 mg of Risperdal (in 2 doses, morning and afternoon), 100 mg of Zoloft in the morning. Clonidine was a bit of a disaster for him and us.

  5. mom-nos says:

    He’s on .5 mg of Risperdal (.25 twice a day) and 50 mg of Strattera (25 mg x 2). He was on Zoloft (25 mg am and 37.5 mg pm) until a couple of weeks ago, when we switched to fluvoxamine (Luvox). We’ve been slowly increasing dose.

  6. autismvox says:

    thank you—anxiety seems to be a major problem for Charlie and often leads to “behaviors.” have been wondering if the Zoloft is enough for him.

  7. mom-nos says:

    We’ve switched from Zoloft because he needed an increase, but the next bump in dose made him manic (happy… but TOO happy). The doc is guessing it’s the dopamine, which is also in Strattera (which also needs to be bumped up, we think), so we switched to Luvox. Luvox is actually fda approved for ocd in children, so I’m hoping it will be effective with the perseveration/obsession issues. So far… not so much.

  8. mom-nos says:

    Ritalin was a nightmare for Bud, as was Adderall. Strattera has been great, though. He’s been on it since he started Kindergarten.

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