How is this for a wrench in the works?

Duhdee and I came to a decision, finally, on the clinical trial. We decided that Monkey is doing so amazingly well on C.elexa (increased language, happier in general) *and* that since he’s just starting at a new school…it wasn’t fair to change his medications at this time. Soooooo…we emailed the amazing Dr. Nasir and asked him about increasing the C.elexa since he had mentioned he wanted to try some slight increases to see if Monkey had additional benefits.

Dr. Nasir called us back yesterday and said it was very interesting that we had brought up the C.elexa issue today because he had a notice on his desk from the manufacturer warning of heart risks at high doses. W.T.F.

He now wants to switch Monkey from C.elexa entirely. He doesn’t feel comfortable increasing the dose, even though it’s currently a tiny dose, given this information. Duhdee and I are back to considering the drug trial. We’re hoping Dr. Nasir and the study doctors can come up with an alternative for his anxiety that will allow him to participate in the trial afterall.

I said before that I would be disappointed if we couldn’t participate in the trial so I’m a little excited about the possibility of doing it afterall but…we just made up our minds! So much torture and now we get to start over…

***I’m rather amused to see what my related posts widget thinks is an appropriate similar post. Did it really have to come back to my liver???***

17 thoughts on “How is this for a wrench in the works?

  • September 16, 2011 at 10:39 am
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    What about abilify? It helps with anxiety, behavior and cognition and can be taken with the STX209….

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  • September 16, 2011 at 10:40 am
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    You have to watch the dose – keep it low – too high has adverse affects! Parker started at 2.5 when he was in 3rd grade.

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  • September 16, 2011 at 10:44 am
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    I think Abilify is contraindicated with Tenex, which he’s also on for attention. I’m not sure the Tenex is having enough of an effect to keep it…he’s still very distracted, very busy…and we have to be *so* careful of OTC medications with it too. Our pharmacist just looooves when we walk up to her with an armful of options to weed through, lol.

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  • September 16, 2011 at 10:56 am
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    Eric Welin, are you taking notes and drafting the e-mail or do I need to send you a draft?

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  • September 16, 2011 at 11:00 am
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    Lexapro is very effective with a lower dose, however I know it’s a derivative of Celexa and therefore not sure about the heart issues- also wellbutrin is used with kids a lot also, and finally zoloft is often used more with anxiety… (this is all info from ‘social worker’ me, not ‘mom with experience’ me :))

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  • September 16, 2011 at 11:06 am
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    Zoloft was the first one considered but I think there is an issue with that and Tenex too. All SSRIs are excluded from the study so I’m hoping we can do something else instead.

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  • September 16, 2011 at 11:14 am
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    Jeanie Calenoff, that’s Ritalin, right? We tried that before the Tenex and it was ugly, C didn’t do well on it.

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  • September 16, 2011 at 11:34 am
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    When he came down in the evenings he was *very* emotional…a weepy mess every late afternoon/evening. He was also on two doses, one in the early AM and one in the later morning and they had the same issue between doses at school.

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  • September 16, 2011 at 11:36 am
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    This post tears me up a little. Because my boys are suffering so much right now — with the stress of the start of school, and waiting for the clinical trial to start (only a little over a week away, now) and no anxiety meds to take the edge off! I am wondering quite a bit whether this was a mistake. We’ve come this far though, we won’t back out now. Ugh, it’s so hard to decide what is best, though.
    Bonnie´s last blog post ..In the News – Autistic Boy Lost in the Woods

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  • September 16, 2011 at 11:37 am
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    It used to be that way here too, I forgot but we’re older and on STX209. Also, the methylphenidate is a really, really low dose.

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  • September 16, 2011 at 12:13 pm
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    We are going to hear today if Nathan is in the study. I hope so, if not …next week Dr. Nasir is going to be prescribing some other drug because we need to do something! Crazy about celexa, too bad. Hopefully it will get straightened out easily and you can participate in the study!

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  • September 16, 2011 at 9:43 pm
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    My 4yr old little boy was given respidal (probably didnt spell that right. i threw it away.) but isnt that a little strong for a 4yr old. it was a low dose but he freaked out on it. any thoughts on this would help.

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  • October 11, 2011 at 12:10 pm
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    Love Dr. Nasir. Love that he is cautious. He has Jacob on Zoloft and it has changed his life tremendously.

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